Before I get into speech therapy, Al raised a great point. A point about sounds startling me or scaring me. Thats a good point and I am going to explore it, thanks for bringing that up Al 8)
What you are referring to is Aural Habilitation. This is the process of being taught how to understand sounds. When you are able to hear for the first time a lot of sounds not only startle you, but placing where they came from is also a challenge. When I say placing, I dont mean what created the sound, but what I am talking about is what location it came from. Sounds coming from behind me can be difficult as well as sounds coming from the left or right. Its a lot easier when you know its right in front of you but when something makes a noise and you cant see where it came from, it can be tough to comprehend.
Also, keep in mind that things like sarcasm, anger, sadness and other emotions are very difficult to figure out. I find sarcasm the hardest of all because it involves not only understanding the tone of the voice, but also the words. For that reason, I often do not click in when someone is being sarcastic with me. I can figure it out when they use ASL but not when they actually speak.
Other things that can be hard to deal with are telephones. I find that unless the line is very clear, I can sometimes find myself not completely sure of what is being said to me and so I have to listen closer. I also find CD's are a little tough too sometimes when music and words are combined. Sometimes the music is clear but if the voice of the singer is not terribly clear, I can struggle with it.
Aural habilitation is done with a specialist and it involves things like using the phone, listening to CD's and books on tape, reading out loud or listening to someone read short things and then repeating it back. The goal is to get you to the point where you can train your hearing to be able to make out words and sounds and not only determine what they are, but also where they are coming from.
One thing Al said is very true. All the little sounds that you take for granted or maybe have just trained yourself not to listen to (Like your spouse's voice LOL) for me are much more distracting and startling. You may not find a dripping tap to be a big deal but to me it is a major nuissance. Rustling trees, pants rubbing together, people chewing loud crunchy food, debris blowing down a street, anything like that. I guess you would call them environmental sounds, and you probably tune them out but I dont. I hear them, and I dont take them for granted.
LiveSTRONG!
Wednesday, April 30, 2008
Tuesday, April 29, 2008
Walk With Me, Talk With Me!
Its been a little while since I took a step back and just talked a little about what is going on here so I thought I should take a break from the current series today and just do a quick check in with everyone so you all know what is going on.
Tomorrow I head in for my final pre-op work and do my last round of chemo before we get ready for the big day next wednesday. I cant believe I am a week away from the biggest day of my life. Its scary and exciting all at the same time. All the tests so far indicate that the time is right so I guess now I just put faith in the powers that be around this.
For those wondering what is new with Caleb, he has settled in nicely in our house. He is doing everything that is asked of him and I honestly think that he is doing better than he ever has. He has also connected with Zach on the SIMhl and the two of them have been at each other in some sort of rap rhyme contest. I tried to compete but I am just bad at it. Zach tells me though that Caleb is pretty good and that he is giving him a challenge. Hard to rip on Caleb cuz he is pretty air tight. On that same note, Caleb is going to take the keys to the SIMhl for me well I am gone and run my team. Zach, Fire, and Al have all agreed to help him out where they can. I picked my 3 fav GM's and I took those 3 cuz at least one is guaranteed to be on long enough to check if there is mail from Caleb.
What to do about the blog though. I sent my buddy Zach a note to ask him what he thought I should do and he agreed that the best thing to do was to give Caleb the keys to my blog and let him use it as a way of keeping all of you up to date around what is happening with my recovery. It appears that even from my hospital bed, the reality/gong show that is my life will continue to stream live on the blog. Before anyone asks, I will not be accepting, flowers, cards or phone calls. Two reasons for this. One is that I dont think its necessary and secondly, I think that kind of stuff should be posted on the blog. If you feel the need to write something about my recovery, please post it on the blog so everyone can be a part of it instead of just me. The world needs more feel good comments and I dont think I should be the only one who gets to enjoy them.
On another note, Caleb's 18th Birthday is coming May 4th. I am going to take him out for dinner and the rents have agreed to let me have the house to myself. I think they know more than they let on but they seem to trust me. Its my intention to finally have sex with the Big C and get that out on the table. I am sure it will be awkward, weird, and completely spastic but I dont care. I love him and I can think of no better way to show him that then to finally give it up. I also want to do this because I go in for surgery just a few days later and if I dont make it, I want to know that I finally gave up my virginity to the one who makes me shine!
There is probably loads more I could and should write, and I will. I am going to transition this blog from being about the past to being more about the present and future. The entry right before I go in for surgery will be a culmination of my life before Cancer. It will also be the last time I spend so much time talking about the past. Going forward I will spend more time talking about my future and the present. That does not mean I am going to stop talking about the wonders of being able to hear, cuz I am still gonna do that. I also need to make sure I spend a few entries blogging about Zach since he seems to think I need to spend a few entries talking about him. Its like I have always said though, becareful what you wish for LOL!
Alrighty everyone, hope you have a great day, and I will see you tomorrow when I walk you through speech therapy!
LiveSTRONG!
Tomorrow I head in for my final pre-op work and do my last round of chemo before we get ready for the big day next wednesday. I cant believe I am a week away from the biggest day of my life. Its scary and exciting all at the same time. All the tests so far indicate that the time is right so I guess now I just put faith in the powers that be around this.
For those wondering what is new with Caleb, he has settled in nicely in our house. He is doing everything that is asked of him and I honestly think that he is doing better than he ever has. He has also connected with Zach on the SIMhl and the two of them have been at each other in some sort of rap rhyme contest. I tried to compete but I am just bad at it. Zach tells me though that Caleb is pretty good and that he is giving him a challenge. Hard to rip on Caleb cuz he is pretty air tight. On that same note, Caleb is going to take the keys to the SIMhl for me well I am gone and run my team. Zach, Fire, and Al have all agreed to help him out where they can. I picked my 3 fav GM's and I took those 3 cuz at least one is guaranteed to be on long enough to check if there is mail from Caleb.
What to do about the blog though. I sent my buddy Zach a note to ask him what he thought I should do and he agreed that the best thing to do was to give Caleb the keys to my blog and let him use it as a way of keeping all of you up to date around what is happening with my recovery. It appears that even from my hospital bed, the reality/gong show that is my life will continue to stream live on the blog. Before anyone asks, I will not be accepting, flowers, cards or phone calls. Two reasons for this. One is that I dont think its necessary and secondly, I think that kind of stuff should be posted on the blog. If you feel the need to write something about my recovery, please post it on the blog so everyone can be a part of it instead of just me. The world needs more feel good comments and I dont think I should be the only one who gets to enjoy them.
On another note, Caleb's 18th Birthday is coming May 4th. I am going to take him out for dinner and the rents have agreed to let me have the house to myself. I think they know more than they let on but they seem to trust me. Its my intention to finally have sex with the Big C and get that out on the table. I am sure it will be awkward, weird, and completely spastic but I dont care. I love him and I can think of no better way to show him that then to finally give it up. I also want to do this because I go in for surgery just a few days later and if I dont make it, I want to know that I finally gave up my virginity to the one who makes me shine!
There is probably loads more I could and should write, and I will. I am going to transition this blog from being about the past to being more about the present and future. The entry right before I go in for surgery will be a culmination of my life before Cancer. It will also be the last time I spend so much time talking about the past. Going forward I will spend more time talking about my future and the present. That does not mean I am going to stop talking about the wonders of being able to hear, cuz I am still gonna do that. I also need to make sure I spend a few entries blogging about Zach since he seems to think I need to spend a few entries talking about him. Its like I have always said though, becareful what you wish for LOL!
Alrighty everyone, hope you have a great day, and I will see you tomorrow when I walk you through speech therapy!
LiveSTRONG!
Monday, April 28, 2008
Life Before Cancer, Part 5
I have talked about the sounds of my first thunderstorm and I was trying to think about what would be interesting to talk about next. I think I am going to talk about hearing my own voice for the first time. From there I will spend some time tomorrow talking about speech therapy since they go hand in hand.
When you dont know how to talk sometimes the biggest challenge is just trying to get the simplest words out. The problem is, when I first went to say anything at all it was basically a grunting kind of sound. Not really words as much as it was just a collection of sounds.
When I first went to try and talk and find my voice I was really self conscious. I was afraid to let people hear me because to me it sounded more like an animal and not much like a human voice. I think in that respect it can be kind of embarassing.
Its really hard to describe because most people do not remember when they first spoke. You can hear a baby giggle, gurgle, and make baby noises and although we laugh at stuff like that, it is not always as funny when your hearing a grown teenager doing it..
So what did my voice sound like? Well, it was kind of deep, kind of smooth, but kind of start and stop. I dont really know how to describe it any other way. Its really tough to try and explain when you dont really know yourself.
Once I got the ability to use my voice, the next step was to learn to be able to use it to make actual words instead of just funny sounds.
In my next entry I am going to spend a little bit of time talking about speech therapy and the long and painful process of learning to talk at my age. Its not easy and I still dont have it right but I am trying and I am doing pretty good at it.
Stay tuned, the best is yet to come in this series. On that note, is there anything in particular you would like me to blog about? If there is, leave it in the remarks and I will be happy to touch on it for you. Till then
LiveSTRONG!
When you dont know how to talk sometimes the biggest challenge is just trying to get the simplest words out. The problem is, when I first went to say anything at all it was basically a grunting kind of sound. Not really words as much as it was just a collection of sounds.
When I first went to try and talk and find my voice I was really self conscious. I was afraid to let people hear me because to me it sounded more like an animal and not much like a human voice. I think in that respect it can be kind of embarassing.
Its really hard to describe because most people do not remember when they first spoke. You can hear a baby giggle, gurgle, and make baby noises and although we laugh at stuff like that, it is not always as funny when your hearing a grown teenager doing it..
So what did my voice sound like? Well, it was kind of deep, kind of smooth, but kind of start and stop. I dont really know how to describe it any other way. Its really tough to try and explain when you dont really know yourself.
Once I got the ability to use my voice, the next step was to learn to be able to use it to make actual words instead of just funny sounds.
In my next entry I am going to spend a little bit of time talking about speech therapy and the long and painful process of learning to talk at my age. Its not easy and I still dont have it right but I am trying and I am doing pretty good at it.
Stay tuned, the best is yet to come in this series. On that note, is there anything in particular you would like me to blog about? If there is, leave it in the remarks and I will be happy to touch on it for you. Till then
LiveSTRONG!
Sunday, April 27, 2008
Life Before Cancer, Part 4
Some of the greatest hearing experiences come from the environment. I think when you hear the sounds of a car going past you, construction happening, a honking horn, all that neat stuff. What I dont think many people do though is step outside at night and listen to (let me steal this from the production) the music of the night.
I can clearly recall the night I first stepped outside and heard crickets. The chirping sounds that they make. It really made me curious because I really had no idea what the sound was or how it was made. I later learned that the cricket rubs its hind legs together to make that noise, but what a discovery. I also listened to leaves rustling in the tree in our backyard. The sound was like a pair of nylon pants rubbing together followed by a whoosh and rattle/crackle kind of sound. It was amazing. There is a ravine not far from where I live and I remember walking through there and hearing the sounds of a stream running. The gurgle of the stream as it ran across rocks and stony outcroppings. It was amazing. The calm and constant sound of the water running its course.
I save the best of all though for the last. I am sure many of you can relate to this and so I am going to spend some time on it. Do many of you recall your first Thunderstorm? I do. I opened the door and stood there on the porch as the rain poured down. I was covered by the front porch...I wanted to hear the sounds, not get soaking wet. At first it was a gentle pitter patter as the rain struck the aluminum parts of the porch, then the sound got louder as the rain fell harder. Soon it was an overpowering barrage of rain and all I could hear was the roof above me and the splashing of the drops hitting the rain soaked driveway. I could hear the drops splashing in the pools of water that were forming. Then it happened, as if out of nowhere natures majesty exposed herself just for me, and with that, a huge flash of light as lightning struck some far away place. Remember, I had no idea what was about to happen next. KAAAABBBBBOOOOOMMMM!!!! and you saw one teenage boy jump straight out of his skin. I was focusing so hard on the sound of the rain that the blast of thunder damn near put me in tears. It scared me so badly that it was not only the ground that shook with the explosive sound, it was me that shook right along with it. I bit my lip and settled myself. Welcome to thunder, I thought to myself. I was grateful that nature gives us that subtle warning that is lightning and as the night wore on, I learned to cover my ears as soon as I saw the warning shot of bright light.
Ever since that evening, I have been completely hooked on thunderstorms. I love them, I pray for them and when they happen, you can almost always find me on the front porch enjoying every second of it.
For all the material things that we have in life, I think that we forget the beauty that mother nature bestows on us for our own personal enjoyment. I dont know if you have sat outside in a while and listened to a thunderstorm, and i dont mean just listen, I mean really listen. Turn off the other sounds and really hear the drops of rain hit the ground. If you haven't, make sure you do. Its a real treat and those of us who choose to immerse ourselves in its beauty are much richer for it.
LiveSTRONG!
I can clearly recall the night I first stepped outside and heard crickets. The chirping sounds that they make. It really made me curious because I really had no idea what the sound was or how it was made. I later learned that the cricket rubs its hind legs together to make that noise, but what a discovery. I also listened to leaves rustling in the tree in our backyard. The sound was like a pair of nylon pants rubbing together followed by a whoosh and rattle/crackle kind of sound. It was amazing. There is a ravine not far from where I live and I remember walking through there and hearing the sounds of a stream running. The gurgle of the stream as it ran across rocks and stony outcroppings. It was amazing. The calm and constant sound of the water running its course.
I save the best of all though for the last. I am sure many of you can relate to this and so I am going to spend some time on it. Do many of you recall your first Thunderstorm? I do. I opened the door and stood there on the porch as the rain poured down. I was covered by the front porch...I wanted to hear the sounds, not get soaking wet. At first it was a gentle pitter patter as the rain struck the aluminum parts of the porch, then the sound got louder as the rain fell harder. Soon it was an overpowering barrage of rain and all I could hear was the roof above me and the splashing of the drops hitting the rain soaked driveway. I could hear the drops splashing in the pools of water that were forming. Then it happened, as if out of nowhere natures majesty exposed herself just for me, and with that, a huge flash of light as lightning struck some far away place. Remember, I had no idea what was about to happen next. KAAAABBBBBOOOOOMMMM!!!! and you saw one teenage boy jump straight out of his skin. I was focusing so hard on the sound of the rain that the blast of thunder damn near put me in tears. It scared me so badly that it was not only the ground that shook with the explosive sound, it was me that shook right along with it. I bit my lip and settled myself. Welcome to thunder, I thought to myself. I was grateful that nature gives us that subtle warning that is lightning and as the night wore on, I learned to cover my ears as soon as I saw the warning shot of bright light.
Ever since that evening, I have been completely hooked on thunderstorms. I love them, I pray for them and when they happen, you can almost always find me on the front porch enjoying every second of it.
For all the material things that we have in life, I think that we forget the beauty that mother nature bestows on us for our own personal enjoyment. I dont know if you have sat outside in a while and listened to a thunderstorm, and i dont mean just listen, I mean really listen. Turn off the other sounds and really hear the drops of rain hit the ground. If you haven't, make sure you do. Its a real treat and those of us who choose to immerse ourselves in its beauty are much richer for it.
LiveSTRONG!
Friday, April 25, 2008
Life Before Cancer, Part 3
I walked out the door of the office and it felt like I was in another world. From the sounds of the door clicking shut to the swoosh swoosh of my shoes as I walked down the carpeted hall and the ping of the elevator arriving. It was all so new to me. I had no idea what to make of it all.
The thing most people forget is that you take for granted the smallest sounds that for someone like me are completely new and foreign.
Getting off the elevator, I made my way to the outside world. Perhaps the biggest thing was the sounds of cars on the street. From engines racing and idling, to the sound of them passing by, tires making crackling sounds against the pavement. It was funny, I had to get used to listening for traffic instead of just watching for it.
Now, the thing with a CI is that it does require updating from time to time, 3, 6, and 12 months kind of thing. The CI needs to essentially be fine tuned for your personal situation and that can only be done over time with feedback from the user.
Aside from environmental sounds, I think for me, one of the best things was being able to hear music. Again, you dont really realize how beautiful something like that can be until your hearing it for the first time. I will spend some more time on that later.
As you can imagine, another highlight was being able to hear my mom and dad's voice. It was really something special to hear them and to hear emotion in their voices. Its a special moment that I think I will always remember for as long as live. The fun part was just moving around the house, testing how far away I could go before I stopped hearing them and then spending time testing my ability to make out words that they were speaking and stuff like that.
I think one of the most fun things was listening to things being cooked in the kitchen. The sound of water being run into a pot, things boiling, other things sizzling, microwave running, all that stuff that most people think nothing of, was very interesting to me. honestly, when was the last time you stood in your kitchen and listened to bacon cook in a frying pan...listen to the popping and snapping and sizzling. I bet you haven't have you? Dont even get me started on my experiences with rice krispies LOL.
I could talk about this stuff forever and it would never be enough. I am going to keep posting on this kind of stuff until I run out of things like this to post on. From there we can go to music, movies, all kinds of stuff but most importantly, we can go to the sound of my own voice.
Perhaps in the next entry I should talk about more of the environmental sounds and then move to some other things like crowds, malls, stuff like that. I am like a kid in a candy store right now....so much I could talk about and I have no idea where to start.
Yeah, I think in the next entry I will talk more about environment stuff and then move on to my own voice and the challenges of learning to talk for the very first time.
LiveSTRONG!
The thing most people forget is that you take for granted the smallest sounds that for someone like me are completely new and foreign.
Getting off the elevator, I made my way to the outside world. Perhaps the biggest thing was the sounds of cars on the street. From engines racing and idling, to the sound of them passing by, tires making crackling sounds against the pavement. It was funny, I had to get used to listening for traffic instead of just watching for it.
Now, the thing with a CI is that it does require updating from time to time, 3, 6, and 12 months kind of thing. The CI needs to essentially be fine tuned for your personal situation and that can only be done over time with feedback from the user.
Aside from environmental sounds, I think for me, one of the best things was being able to hear music. Again, you dont really realize how beautiful something like that can be until your hearing it for the first time. I will spend some more time on that later.
As you can imagine, another highlight was being able to hear my mom and dad's voice. It was really something special to hear them and to hear emotion in their voices. Its a special moment that I think I will always remember for as long as live. The fun part was just moving around the house, testing how far away I could go before I stopped hearing them and then spending time testing my ability to make out words that they were speaking and stuff like that.
I think one of the most fun things was listening to things being cooked in the kitchen. The sound of water being run into a pot, things boiling, other things sizzling, microwave running, all that stuff that most people think nothing of, was very interesting to me. honestly, when was the last time you stood in your kitchen and listened to bacon cook in a frying pan...listen to the popping and snapping and sizzling. I bet you haven't have you? Dont even get me started on my experiences with rice krispies LOL.
I could talk about this stuff forever and it would never be enough. I am going to keep posting on this kind of stuff until I run out of things like this to post on. From there we can go to music, movies, all kinds of stuff but most importantly, we can go to the sound of my own voice.
Perhaps in the next entry I should talk about more of the environmental sounds and then move to some other things like crowds, malls, stuff like that. I am like a kid in a candy store right now....so much I could talk about and I have no idea where to start.
Yeah, I think in the next entry I will talk more about environment stuff and then move on to my own voice and the challenges of learning to talk for the very first time.
LiveSTRONG!
Thursday, April 24, 2008
****UPDATE****
I had an entry all ready to go and I was going to post it this afternoon until the phone rang.
It was my surgeons office. Apparently my surgeon reviewed the rest of the scan images and the lab work they ran and has decided that he wants to proceed with the Craniotomy. He wants to book me in for a week from next Wed.
I am in a total state of shock right now. I have no idea what to do but my gut is saying to do it. I need to talk to Caleb and I need to talk to my rents and see what they have to say. The surgeon wants to know by tomorrow so he can make the arrangements. Apparently there is pre-op stuff to do and he needs to get it moving.
I don't know what to say or do at this point even though my gut is saying do it.
The surgery is a big deal, its about a 10-14 hour affair and I will be laid up in hospital for as long as 4 weeks with another possible two weeks of recovery at home.
God this is such a big deal. if it works I could be cancer free in a couple of weeks and he seems to think that this is the time to do it. The tumor is responding to the Chemo and he believes he has a good shot at getting all of it. If we wait another 3 weeks it could get smaller or it could remain the same but my labs may not be as good.
I guess the decision is really being made for me. I guess I have to do this.
Sorry to drop this on everyone but it just got dropped on me. Now I need to talk to Caleb and the rents.
If its a go, I will let you know tomorrow and then I will continue my series on life before Cancer that everyone seems to be enjoying.
I will want to wrap up that series before I go in.
I still can't believe this is happening to me...I feel alive
LiveSTRONG!
It was my surgeons office. Apparently my surgeon reviewed the rest of the scan images and the lab work they ran and has decided that he wants to proceed with the Craniotomy. He wants to book me in for a week from next Wed.
I am in a total state of shock right now. I have no idea what to do but my gut is saying to do it. I need to talk to Caleb and I need to talk to my rents and see what they have to say. The surgeon wants to know by tomorrow so he can make the arrangements. Apparently there is pre-op stuff to do and he needs to get it moving.
I don't know what to say or do at this point even though my gut is saying do it.
The surgery is a big deal, its about a 10-14 hour affair and I will be laid up in hospital for as long as 4 weeks with another possible two weeks of recovery at home.
God this is such a big deal. if it works I could be cancer free in a couple of weeks and he seems to think that this is the time to do it. The tumor is responding to the Chemo and he believes he has a good shot at getting all of it. If we wait another 3 weeks it could get smaller or it could remain the same but my labs may not be as good.
I guess the decision is really being made for me. I guess I have to do this.
Sorry to drop this on everyone but it just got dropped on me. Now I need to talk to Caleb and the rents.
If its a go, I will let you know tomorrow and then I will continue my series on life before Cancer that everyone seems to be enjoying.
I will want to wrap up that series before I go in.
I still can't believe this is happening to me...I feel alive
LiveSTRONG!
Wednesday, April 23, 2008
The Courage To Keep Fighting!
sometimes there is an event in your life that gives you the courage and the desire to keep fighting. Sometimes you get news that makes you think that it is all worth it, that you need to keep going. Those moments are precious and when they happen you need to latch on to them and never let them go.
For me, that moment came today. I had a routine scan today to check on the progress of the Chemo before I started another round today. Once the scan was done, I went and got hooked up for my Chemo treatment.
Once the treatment was done I met with my neurosurgeon to discuss the results. He put the images up on the screen and told me that we were making some positive progress. The Glioma was actually reducing in size. What he was saying was that I was responding to this new Chemo concoction and we were actually winning the battle. I was speechless, I really didn't know what to say. I was excited but afraid to believe it was true. I asked if he could cut it out yet and he said he could probably do it but wanted to wait a few more weeks, do a few more chemo treatments and see if we could get it a little smaller.
I couldn't believe what I was hearing! There is now a chance that we may be able to complete a craniotomy and excise the Glioma on my brain stem. If it works, I would be rid of it and I may very well remain healthy for the rest of my life.
I am still afraid to believe it all. I am afraid it was just a dream but its not, its really happening to me.
In a few weeks I could be booking a surgical meeting and preparing for surgery. I can't believe it...I just can't believe it.
The surgery is not without risks but I don't care. If it can be done, I want it done. If I don't do it, then I may only have 18 months or less but if it works, I could have the rest of my life!
I am just so pumped and excited and yet I am trying to remain calm cuz it is not written in stone yet. We need to see what happens in a few weeks...at least another 3 treatments, another scan, and then we decide.
I am just hoping that it gets small enough for the surgeon to say yes. I wanna say thanks to everyone who has prayed for me, and has been so supportive and pulled for me. You know who you are and you will never know just how much of an impact you have had on me.
Keep praying for me. Miracles really do happen and I am convinced that I can beat this now, now more than ever, I am sure I can. I will beat this, I will be a survivor, I will LIVESTRONG!!!!!
LiveSTRONG!
For me, that moment came today. I had a routine scan today to check on the progress of the Chemo before I started another round today. Once the scan was done, I went and got hooked up for my Chemo treatment.
Once the treatment was done I met with my neurosurgeon to discuss the results. He put the images up on the screen and told me that we were making some positive progress. The Glioma was actually reducing in size. What he was saying was that I was responding to this new Chemo concoction and we were actually winning the battle. I was speechless, I really didn't know what to say. I was excited but afraid to believe it was true. I asked if he could cut it out yet and he said he could probably do it but wanted to wait a few more weeks, do a few more chemo treatments and see if we could get it a little smaller.
I couldn't believe what I was hearing! There is now a chance that we may be able to complete a craniotomy and excise the Glioma on my brain stem. If it works, I would be rid of it and I may very well remain healthy for the rest of my life.
I am still afraid to believe it all. I am afraid it was just a dream but its not, its really happening to me.
In a few weeks I could be booking a surgical meeting and preparing for surgery. I can't believe it...I just can't believe it.
The surgery is not without risks but I don't care. If it can be done, I want it done. If I don't do it, then I may only have 18 months or less but if it works, I could have the rest of my life!
I am just so pumped and excited and yet I am trying to remain calm cuz it is not written in stone yet. We need to see what happens in a few weeks...at least another 3 treatments, another scan, and then we decide.
I am just hoping that it gets small enough for the surgeon to say yes. I wanna say thanks to everyone who has prayed for me, and has been so supportive and pulled for me. You know who you are and you will never know just how much of an impact you have had on me.
Keep praying for me. Miracles really do happen and I am convinced that I can beat this now, now more than ever, I am sure I can. I will beat this, I will be a survivor, I will LIVESTRONG!!!!!
LiveSTRONG!
Tuesday, April 22, 2008
Life Before Cancer, Part 2
once a CI is installed and turned on, much like a television or a computer or anything else electronic, it needs to be programmed. My CI was no different. The key thing with the programming is setting the volume and getting the resolution of the sound right. If the volume is too high, obviously its like having your ears rung, and it the volume is too low then you cant hear anything clearly.
Getting the sound resolution right is also critical because if you dont get that set right, you will hear what sounds like garbled noise, static, or mumbling depending on what your listening to.
The programming took a little bit of time and involved some simple tests where various words and sounds were played for me and I had to identify them the best I could. As we completed the programming, I got to the point where I was ready to go out and face the world.
Once your programming is done, you still have to go back periodically to get things adjusted and have a few technical things tweaked. Its not as complicated as it sounds but it is important to maintain the quality of the sounds your hearing.
Once all the initial programming is done, you can safely walk out the door and begin hearing the world at large.
The thing that I had to keep in mind is that like anything in life, it gets better with time. I was warned that initially some things may not sound clear, voices may still seem garbled and I may get frustrated with not being able to make out everything I hoped to make out. I was told that as my body trained itself to use the device, I would be able to use it more effectively and I would do much better with it.
As I got up to go, I heard the squeaking of my shoes on the floor, I took the door handle and heard the click clack of the hinge as the door opened and I stopped cold as I realized that I was hearing...actually hearing.
In my next entry, I will take you on my first trip out the door from the specialists office as I entered the world as a hearing abled person and everything that comes with that experience.
LiveSTRONG!
Getting the sound resolution right is also critical because if you dont get that set right, you will hear what sounds like garbled noise, static, or mumbling depending on what your listening to.
The programming took a little bit of time and involved some simple tests where various words and sounds were played for me and I had to identify them the best I could. As we completed the programming, I got to the point where I was ready to go out and face the world.
Once your programming is done, you still have to go back periodically to get things adjusted and have a few technical things tweaked. Its not as complicated as it sounds but it is important to maintain the quality of the sounds your hearing.
Once all the initial programming is done, you can safely walk out the door and begin hearing the world at large.
The thing that I had to keep in mind is that like anything in life, it gets better with time. I was warned that initially some things may not sound clear, voices may still seem garbled and I may get frustrated with not being able to make out everything I hoped to make out. I was told that as my body trained itself to use the device, I would be able to use it more effectively and I would do much better with it.
As I got up to go, I heard the squeaking of my shoes on the floor, I took the door handle and heard the click clack of the hinge as the door opened and I stopped cold as I realized that I was hearing...actually hearing.
In my next entry, I will take you on my first trip out the door from the specialists office as I entered the world as a hearing abled person and everything that comes with that experience.
LiveSTRONG!
Monday, April 21, 2008
Life Before Cancer, Part 1
This entry will mark the first of a new series I will be running for the next little while. The only break in the series will come Thursday when I go over the results of my scan. I hope you enjoy this new series as much as I am going to enjoy writing it.
I did not always have cancer, and I was not always doing chemo and battling this disease. There was a time when I had my hearing and I was free of illness.
Sometimes when your in the middle of battling something you lose your perspective and your whole world becomes swallowed up by the big C word and then it the focus of everything you talk about all the time.
Today I want to break that cycle and take some time this week to talk about a few big events that took place before the biggest one of all happened.
I can remember very clearly waking up in the hospital after having the implant surgery done. My life was about to change in a big way. I was going to be able to hear for the first time. The thing you have to remember is that a Cochlear works for different people in different ways. Some people can hear sounds but it is not all that clear well others hear things pretty well and can make things out. You dont know what your personal situation is going to be until you get your activation done.
Once the surgery is done it takes about 4 weeks for the surgical site to heal up and then you meet with your specialist to have the rest of the hookup and programming done.
I remember very clearly, the wait for the big day. In my case it took 5 weeks for the site to heal sufficiently enough for me to entertain having everything else done. I met with the specialist after anxiously waiting all the day before. You have no idea what it is like to sit and wait knowing that one day later your going to be able to hear.
Once I met with the specialist, he explained all the external parts to me. He then began the process of hooking me up. there is a magnet that holds the device to the side of my head and that is also where the surgical site is which was a little tender but I was too excited to care.
He hooked up the device and before he turned it on we had some conversation around what to expect and what the future would hold. Then the moment of truth, the device was turned on. I heard a bit of crackling and then the first few sounds of my life.
I am going to spend an entire entry on some of the sounds that I heard for the very first time and what it was like to hear them.
What I am going to do tomorrow is walk you through the stages of programming a CI device and what it was like to go through programming as well as doing a separate entry on speech therapy and learning how to talk.
I know I have glossed over this stuff in the past but I think I am going to focus more time on it now.
Thursday will be a special update on my progress as I get the results of the latest scan of my tumor.
I want to spend the next little while talking about what it was like to hear and live life for the first time as a hearing abled individual and before I got diagnosed with Cancer. I think it would be fun to share all that with you.
I hope you stick around as I walk you through the steps of programming and all the fun that comes with that.
Hang in there, the best is yet to come!
LiveSTRONG!
I did not always have cancer, and I was not always doing chemo and battling this disease. There was a time when I had my hearing and I was free of illness.
Sometimes when your in the middle of battling something you lose your perspective and your whole world becomes swallowed up by the big C word and then it the focus of everything you talk about all the time.
Today I want to break that cycle and take some time this week to talk about a few big events that took place before the biggest one of all happened.
I can remember very clearly waking up in the hospital after having the implant surgery done. My life was about to change in a big way. I was going to be able to hear for the first time. The thing you have to remember is that a Cochlear works for different people in different ways. Some people can hear sounds but it is not all that clear well others hear things pretty well and can make things out. You dont know what your personal situation is going to be until you get your activation done.
Once the surgery is done it takes about 4 weeks for the surgical site to heal up and then you meet with your specialist to have the rest of the hookup and programming done.
I remember very clearly, the wait for the big day. In my case it took 5 weeks for the site to heal sufficiently enough for me to entertain having everything else done. I met with the specialist after anxiously waiting all the day before. You have no idea what it is like to sit and wait knowing that one day later your going to be able to hear.
Once I met with the specialist, he explained all the external parts to me. He then began the process of hooking me up. there is a magnet that holds the device to the side of my head and that is also where the surgical site is which was a little tender but I was too excited to care.
He hooked up the device and before he turned it on we had some conversation around what to expect and what the future would hold. Then the moment of truth, the device was turned on. I heard a bit of crackling and then the first few sounds of my life.
I am going to spend an entire entry on some of the sounds that I heard for the very first time and what it was like to hear them.
What I am going to do tomorrow is walk you through the stages of programming a CI device and what it was like to go through programming as well as doing a separate entry on speech therapy and learning how to talk.
I know I have glossed over this stuff in the past but I think I am going to focus more time on it now.
Thursday will be a special update on my progress as I get the results of the latest scan of my tumor.
I want to spend the next little while talking about what it was like to hear and live life for the first time as a hearing abled individual and before I got diagnosed with Cancer. I think it would be fun to share all that with you.
I hope you stick around as I walk you through the steps of programming and all the fun that comes with that.
Hang in there, the best is yet to come!
LiveSTRONG!
Sunday, April 20, 2008
A Day Of First's
Yesterday was a day of firsts for me. It was truly a very big day in my life as I did a couple of things I have never done before. I know I left everyone hanging in my last entry but I needed to get some advice, and some opinions from some people I really trust. My thanks to those of you who were able to get back to me so quickly.
Lets get down to business. The first thing for the day took place when I woke up. As I left off, I was going to get out of bed and I couldn't. Caleb was half awake, half dressed, and laying there in bed looking really cute. I have no idea what took over me or what happened but in a moment of time that I can't really understand, I shared a very intimate exchange with him, one that made him very happy. Now, don't get me wrong, I am still very much a virgin so NO, we did not have sex. It was just something that at the time, felt like something I wanted to do for him. When it was over, it changed me. I think for me it was the first real moment in which I have committed to this new lifestyle on a physical level. I mean, sure, sleeping with him and kissing him and all that was probably a commitment, but what I did that morning was something all together different. I thought I would be scared, nervous, freaked out and all that stuff but I wasn't. I was actually very comfortable and very much in control of myself. Th best part was when it was all done and he put his hand on the side of my face and with a very sincere look on his face, he said thank you and that he loved me and knew how much courage that probably took. I felt appreciated and it made the start of my day a good one.
The day was already going to be a big one for me as we were heading to my first ever Toronto Blue Jays game. The Jays were playing the Tigers and I was going! We were sitting in Section 127 of the Rogers Centre which is right between home plate and third and we were about 10 rows back from the field. It was amazing.
When we got to the dome stadium I was in complete awe of the size of the whole thing. It is huge inside and out. We walked along outside to gate 10 where we were going to head in. There was a huge mob of people and I got a little disoriented with all those people being around...talking, laughing, people yelling about selling tickets, program vendors yelling out for people to buy the game day program.
Once we got inside the gate I think I was in another world. The sounds, so many sounds. Sounds of people walking, talking, vendors selling things, cell phones ringing. It was very intense for me. I just wanted to find my seat and get settled.
W made our way down the aisle and Caleb took the inside seat and let me sit closest to the aisle. I wanted to be close to an aisle in case I got overwhelmed and had to get up.
One by one, players took time in the batting cage. It was amazing, the sound of the crack of the bat, the snap of the ball hitting the leather of Marco Scutaro's glove at third, the bats being bounced on the turf and the gentle buzz of voices in this massive stadium having conversations.
Once the warm ups were done we were all asked to stand and remove our hats for the singing if the national anthems. I have never heard the US anthem before and so when this girl walked out to the mike and started singing, I was blown away. Her voice was so pure, so strong. She sang and gave me goosebumps. As she switched to the Canadian Anthem, I did my best to sing along with her as I heard a dull version of the anthem being sung in the stadium as over 30,000 voices sang along with her. It was awe inspiring and I was lost for words...flush with emotions.
When she completed the anthems the loud roar of cheering swept the stadium and I almost had to cover my ears it was so loud. It really threw me.
Out walked Dustin McGowan to start the game. I watched him wind up and throw his first pitch as my first ever Jays game began in earnest. I heard the snap of Rod Barajas's glove as Dustin threw his first pitch for ball 1. I will never forget that image of Dustin throwing that first pitch, the mutton chop side burns, the look of seriousness and the batter waiting for the opportunity to crank the offering out of the park.
It was not long before I got my first home run experience. Bottom of the 1st and Alex Rios takes Bonderman deep for a solo shot. "Touch em all Alex" I shout as he makes his way around third. I know he does not hear me but I dont care. The crowd is just roaring and I am really getting into the whole thing. Its loud, very very loud and the sound effects in the game really give me a few moments of jumping in my seat as I am not ready for them. I am getting used to it though and Caleb keeps an eye on me. I think he is wrapped up in that child like wonder I bring to watching the game.
Things go back and forth all game as the Jays score, then the Tigers score, and the Jays score again!
I participate in the wave as it makes its way around the dome several times before people lose interest. The 7th inning stretch affords me a chance to get up and stretch my legs and arms. I am having a blast.
By the time the 9th inning rolls around, its 3-2 Jays and my boy B.J. Ryan comes running in from the pen to a thunderous applause. I am out of my seat and standing now with almost everyone else. Ryan gives up one hit and then another. There is a man on 3rd and a man on 1st with 2 out. One hit and the game is tied. The count is 2-2 and we are all screaming for a strike. The clapping, cheering, and anticipation. The tension is unreal as we all wait. Here's the pitch, Snap, it hits the glove as the umpire turns, shoots out his arm and declares a strike. 'He struck him out, he struck him out I yell as I jump around" . The dome goes nuts as everyone lets out a collective sigh of relief and a massive cheer.
Jays win, Jays win 3-2 as the players roll out to the field to congratulate each other.
The bus ride home is amazing. I sit and reflect on the day that was and how much fun I had at my first game. It surely wont be my last one.
Today I experience two very major things in my life and both of them have different yet profound impacts on me for 2 different reasons. I am very lucky and I know it. I have challenged my fear of crowds and loud noise and lived to tell. I have done what every kid needs to do and that is to see their baseball team win a ballgame.
Today I not only lived, but I lived STRONG! I am in awe and my emotions wont let me properly share what all this meant to me. I hope you can read between the lines today and know that today was one of the biggest days in my life.
LiveSTRONG!
Lets get down to business. The first thing for the day took place when I woke up. As I left off, I was going to get out of bed and I couldn't. Caleb was half awake, half dressed, and laying there in bed looking really cute. I have no idea what took over me or what happened but in a moment of time that I can't really understand, I shared a very intimate exchange with him, one that made him very happy. Now, don't get me wrong, I am still very much a virgin so NO, we did not have sex. It was just something that at the time, felt like something I wanted to do for him. When it was over, it changed me. I think for me it was the first real moment in which I have committed to this new lifestyle on a physical level. I mean, sure, sleeping with him and kissing him and all that was probably a commitment, but what I did that morning was something all together different. I thought I would be scared, nervous, freaked out and all that stuff but I wasn't. I was actually very comfortable and very much in control of myself. Th best part was when it was all done and he put his hand on the side of my face and with a very sincere look on his face, he said thank you and that he loved me and knew how much courage that probably took. I felt appreciated and it made the start of my day a good one.
The day was already going to be a big one for me as we were heading to my first ever Toronto Blue Jays game. The Jays were playing the Tigers and I was going! We were sitting in Section 127 of the Rogers Centre which is right between home plate and third and we were about 10 rows back from the field. It was amazing.
When we got to the dome stadium I was in complete awe of the size of the whole thing. It is huge inside and out. We walked along outside to gate 10 where we were going to head in. There was a huge mob of people and I got a little disoriented with all those people being around...talking, laughing, people yelling about selling tickets, program vendors yelling out for people to buy the game day program.
Once we got inside the gate I think I was in another world. The sounds, so many sounds. Sounds of people walking, talking, vendors selling things, cell phones ringing. It was very intense for me. I just wanted to find my seat and get settled.
W made our way down the aisle and Caleb took the inside seat and let me sit closest to the aisle. I wanted to be close to an aisle in case I got overwhelmed and had to get up.
One by one, players took time in the batting cage. It was amazing, the sound of the crack of the bat, the snap of the ball hitting the leather of Marco Scutaro's glove at third, the bats being bounced on the turf and the gentle buzz of voices in this massive stadium having conversations.
Once the warm ups were done we were all asked to stand and remove our hats for the singing if the national anthems. I have never heard the US anthem before and so when this girl walked out to the mike and started singing, I was blown away. Her voice was so pure, so strong. She sang and gave me goosebumps. As she switched to the Canadian Anthem, I did my best to sing along with her as I heard a dull version of the anthem being sung in the stadium as over 30,000 voices sang along with her. It was awe inspiring and I was lost for words...flush with emotions.
When she completed the anthems the loud roar of cheering swept the stadium and I almost had to cover my ears it was so loud. It really threw me.
Out walked Dustin McGowan to start the game. I watched him wind up and throw his first pitch as my first ever Jays game began in earnest. I heard the snap of Rod Barajas's glove as Dustin threw his first pitch for ball 1. I will never forget that image of Dustin throwing that first pitch, the mutton chop side burns, the look of seriousness and the batter waiting for the opportunity to crank the offering out of the park.
It was not long before I got my first home run experience. Bottom of the 1st and Alex Rios takes Bonderman deep for a solo shot. "Touch em all Alex" I shout as he makes his way around third. I know he does not hear me but I dont care. The crowd is just roaring and I am really getting into the whole thing. Its loud, very very loud and the sound effects in the game really give me a few moments of jumping in my seat as I am not ready for them. I am getting used to it though and Caleb keeps an eye on me. I think he is wrapped up in that child like wonder I bring to watching the game.
Things go back and forth all game as the Jays score, then the Tigers score, and the Jays score again!
I participate in the wave as it makes its way around the dome several times before people lose interest. The 7th inning stretch affords me a chance to get up and stretch my legs and arms. I am having a blast.
By the time the 9th inning rolls around, its 3-2 Jays and my boy B.J. Ryan comes running in from the pen to a thunderous applause. I am out of my seat and standing now with almost everyone else. Ryan gives up one hit and then another. There is a man on 3rd and a man on 1st with 2 out. One hit and the game is tied. The count is 2-2 and we are all screaming for a strike. The clapping, cheering, and anticipation. The tension is unreal as we all wait. Here's the pitch, Snap, it hits the glove as the umpire turns, shoots out his arm and declares a strike. 'He struck him out, he struck him out I yell as I jump around" . The dome goes nuts as everyone lets out a collective sigh of relief and a massive cheer.
Jays win, Jays win 3-2 as the players roll out to the field to congratulate each other.
The bus ride home is amazing. I sit and reflect on the day that was and how much fun I had at my first game. It surely wont be my last one.
Today I experience two very major things in my life and both of them have different yet profound impacts on me for 2 different reasons. I am very lucky and I know it. I have challenged my fear of crowds and loud noise and lived to tell. I have done what every kid needs to do and that is to see their baseball team win a ballgame.
Today I not only lived, but I lived STRONG! I am in awe and my emotions wont let me properly share what all this meant to me. I hope you can read between the lines today and know that today was one of the biggest days in my life.
LiveSTRONG!
Saturday, April 19, 2008
What's In A Derry?
My name is kind of unique or so I am told anyway. I dont think I have ever met another Derry personally and most people I talk to haven't run into one either. I am not sure how my rents decided on my name but to be honest, I think it is really cool.
There are some not so cool things about it and one is that I often get called Derry Queen. I laugh about it now but when I was younger I did not find it so funny. its also tough to be named after a food group cuz then you get the silly comments about making sure you get enough servings of Derry LOL.
On the flip side though, Caleb thinks its really cool that my name is so unique. I think his is unique too cuz I don't know any other Caleb's but him.
So last night was a total train wreck at my house. The rents are gone until Sunday night which means that Caleb and I have had the house to ourselves since Friday. Last night we opened up a case of 24 (I don't drink much at all but tonight I decided to let loose). For Caleb its a real treat because him being 17, he is not at the legal drinking age, and me being 19, I am JUST at the legal age. So last night we get into the beer and sure enough, Caleb gets almost stone cold hammered. At one point he had my mom's swiffer mop and he was dancing around the living room and pretending to do Karaoke. Through all of this I have a wicked buzz going and I am chatting away to Zach on the SIM who is having a great time letting me have it in an insult war.
At any rate, as the night wore on we both got to the point where we were tired and we headed for bed. From there, we got changed and instead of sleeping apart, Caleb crawled into my bed and we crashed together. Nothing happened, nothing at all except him wrapping his arm around me and me pulling up close to him. We both crashed and slept together. I will admit it took me a little while to fall asleep, my adrenaline was going and my hormones were on overdrive but I did manage to fall asleep after a while.
It was the sound of the alarm that woke me up at 9 AM. I went to get up, rolled over and started to wake Caleb up. We were heading to my first ever baseball game today in Toronto to watch the Jays play the Tigers. This was going to be a big day for me.
I went to get out of bed but something was on my mind, something was pulling at me.
And your just going to have to wait till tomorrow to find out what happened and hear about my first baseball game...sorry...I need to get some advice on something first.
LiveSTRONG!
There are some not so cool things about it and one is that I often get called Derry Queen. I laugh about it now but when I was younger I did not find it so funny. its also tough to be named after a food group cuz then you get the silly comments about making sure you get enough servings of Derry LOL.
On the flip side though, Caleb thinks its really cool that my name is so unique. I think his is unique too cuz I don't know any other Caleb's but him.
So last night was a total train wreck at my house. The rents are gone until Sunday night which means that Caleb and I have had the house to ourselves since Friday. Last night we opened up a case of 24 (I don't drink much at all but tonight I decided to let loose). For Caleb its a real treat because him being 17, he is not at the legal drinking age, and me being 19, I am JUST at the legal age. So last night we get into the beer and sure enough, Caleb gets almost stone cold hammered. At one point he had my mom's swiffer mop and he was dancing around the living room and pretending to do Karaoke. Through all of this I have a wicked buzz going and I am chatting away to Zach on the SIM who is having a great time letting me have it in an insult war.
At any rate, as the night wore on we both got to the point where we were tired and we headed for bed. From there, we got changed and instead of sleeping apart, Caleb crawled into my bed and we crashed together. Nothing happened, nothing at all except him wrapping his arm around me and me pulling up close to him. We both crashed and slept together. I will admit it took me a little while to fall asleep, my adrenaline was going and my hormones were on overdrive but I did manage to fall asleep after a while.
It was the sound of the alarm that woke me up at 9 AM. I went to get up, rolled over and started to wake Caleb up. We were heading to my first ever baseball game today in Toronto to watch the Jays play the Tigers. This was going to be a big day for me.
I went to get out of bed but something was on my mind, something was pulling at me.
And your just going to have to wait till tomorrow to find out what happened and hear about my first baseball game...sorry...I need to get some advice on something first.
LiveSTRONG!
Friday, April 18, 2008
The 19 Year Old Virgin
Every now and then I feel the need to bare my soul to the world and let everyone in for an intimate walk through the inner workings of who I am. To give everyone a glimpse of the fabric of who I am. Today is one of those days.
I had a great conversation last night that got me thinking. I am 19 years old and I have never had sex with anyone. I mean, I have kissed girls and I have most definitely kissed Caleb but that is as much experience as I have.
At 19 I know that makes me very odd. Not many guys my age can claim to never have done anything serious with one sex or the other. I accept that it makes me an oddball, I also know that some will think it makes me lame or whatever. I get it, and I accept that.
Thing is, I want to share the experience of intimate exchanges with someone I love and who loves me back. Notice I said Love, not Lust. I have lusted for many people in my life but Love is something different. I also need the person that I love to be able to challenge me physically, emotionally, and intellectually. I need the person to have intelligence. I don't want the easy way out. I could probably have had sex many times over by now but I haven't because it was too easy. I want to give the person I love enough to have sex with, the gift of my virginity. God, that must sound so very lame to many people. I must also sound like such a prude and a dreamer.
I know the one thing about intimacy that scares me more than anything else is that I am not going to be good at it or good enough. I worry that because this is my first time I am not going to be able to make Caleb happy. I know that sounds stupid because he has told me many times that I already make him happy and he is fine being patient with me around this. It does not change the fact that I am going to be nervous as all get out. Guys, you know what I am talking about...this entry is a soul searching entry and so you need to know that its going to get personal. I worry that I wont be able to perform well or for any great length of time. Think back to your very first experience, think back to the things that went through your mind. Think back to how quickly the whole thing happened and left you wondering..."what the hell just happened and what do I do now?" Those are the things that I think about.
Am I overanalyzing this? maybe I am but its only because I am the kind of person who thinks...a lot. I also know that my brand of sex is not mainstream. I have plenty of knowledge about main stream heterosexual sex. Its taught to us in school and its all over the media. The thing is, I don't have nearly as much knowledge around gay sex and combining that with the fact I have no experience period, its like a double whammy. I am really just very confused about the whole thing.
Caleb's birthday is May 4th and I am thinking that the gift I will end up giving him is me...I think that is going to be the day in which I decide that this is the right thing for me. I know I don't owe it to him and I know he would never think that but I think its the right time and the right way to do it.
What can I say...I am 19...a virgin...a bisexual...and trying to find my true place in the world. I am lame and naive, easy to trick, easy to pull apart, easy to beat up in a verbal fight, and easy to rattle if you try hard enough. I have a strong facade, I look tough, I try to talk tough but my insecurities always get the better of me when the camera looks away, when the spotlight moves to someone else. As much as I try to pretend that the things in my world don't bother me, the truth is I am still the simple guy who sometimes sits on his bed and shakes violently when he steps back and takes a good long look at all that is around him. I am still a kid trapped in a body that is quickly trying to become an adult, a body that I often pull apart mentally for its shortcomings and inadequacies. I am the guy who finds salvation and peace in the simplest things life has to offer. I am the guy who approaches almost everything with a child like sense of wonder and innocence. I am on the cusp of the most adult thing I have ever done and that same naive, innocent, child like mindset is the one thing that keeps me from being all in, when it comes to giving it up.
I need to conquer my insecurities...and soon.
LiveSTRONG!
I had a great conversation last night that got me thinking. I am 19 years old and I have never had sex with anyone. I mean, I have kissed girls and I have most definitely kissed Caleb but that is as much experience as I have.
At 19 I know that makes me very odd. Not many guys my age can claim to never have done anything serious with one sex or the other. I accept that it makes me an oddball, I also know that some will think it makes me lame or whatever. I get it, and I accept that.
Thing is, I want to share the experience of intimate exchanges with someone I love and who loves me back. Notice I said Love, not Lust. I have lusted for many people in my life but Love is something different. I also need the person that I love to be able to challenge me physically, emotionally, and intellectually. I need the person to have intelligence. I don't want the easy way out. I could probably have had sex many times over by now but I haven't because it was too easy. I want to give the person I love enough to have sex with, the gift of my virginity. God, that must sound so very lame to many people. I must also sound like such a prude and a dreamer.
I know the one thing about intimacy that scares me more than anything else is that I am not going to be good at it or good enough. I worry that because this is my first time I am not going to be able to make Caleb happy. I know that sounds stupid because he has told me many times that I already make him happy and he is fine being patient with me around this. It does not change the fact that I am going to be nervous as all get out. Guys, you know what I am talking about...this entry is a soul searching entry and so you need to know that its going to get personal. I worry that I wont be able to perform well or for any great length of time. Think back to your very first experience, think back to the things that went through your mind. Think back to how quickly the whole thing happened and left you wondering..."what the hell just happened and what do I do now?" Those are the things that I think about.
Am I overanalyzing this? maybe I am but its only because I am the kind of person who thinks...a lot. I also know that my brand of sex is not mainstream. I have plenty of knowledge about main stream heterosexual sex. Its taught to us in school and its all over the media. The thing is, I don't have nearly as much knowledge around gay sex and combining that with the fact I have no experience period, its like a double whammy. I am really just very confused about the whole thing.
Caleb's birthday is May 4th and I am thinking that the gift I will end up giving him is me...I think that is going to be the day in which I decide that this is the right thing for me. I know I don't owe it to him and I know he would never think that but I think its the right time and the right way to do it.
What can I say...I am 19...a virgin...a bisexual...and trying to find my true place in the world. I am lame and naive, easy to trick, easy to pull apart, easy to beat up in a verbal fight, and easy to rattle if you try hard enough. I have a strong facade, I look tough, I try to talk tough but my insecurities always get the better of me when the camera looks away, when the spotlight moves to someone else. As much as I try to pretend that the things in my world don't bother me, the truth is I am still the simple guy who sometimes sits on his bed and shakes violently when he steps back and takes a good long look at all that is around him. I am still a kid trapped in a body that is quickly trying to become an adult, a body that I often pull apart mentally for its shortcomings and inadequacies. I am the guy who finds salvation and peace in the simplest things life has to offer. I am the guy who approaches almost everything with a child like sense of wonder and innocence. I am on the cusp of the most adult thing I have ever done and that same naive, innocent, child like mindset is the one thing that keeps me from being all in, when it comes to giving it up.
I need to conquer my insecurities...and soon.
LiveSTRONG!
Thursday, April 17, 2008
Chemo Is The Gift That Keeps On Giving
I have just wrapped up the third Chemo treatment which means next week I will do the 4th but not before we do a mini-progress report. It will likely be one of the most critical reports yet. Any signs that the tumor is shrinking will mean that progress is being made and we may be able to get into a position to do something more aggressive in terms of treatment and radiation etc. If the results are not positive, then it means I either choose to keep this up and hope that something gives, or we just make the decision to cease this once and for all and just let it go and let me go.
The doctor will argue that if there is no progress by week 4, that is no reason to stop. In reality, he may be right. And I will probably push to keep going another 3 or 4 weeks if there is no progress. I want to be certain that if I decide to stop, that I truly did everything within reason.
However, if it has shrunk and progress is being made, we will continue indefinitely until it is at a size where something more focused and more deadly to the tumor can be used. Hell, we may even be able to use the R word (remission).
I want to remain cautiously optimistic that this is going to work but I wont know for sure until next week and so once again, the waiting game continues.
In the interim, I continue to lose my hair...which is really hard to deal with but then they say that Bald is beautiful right? I also am having a hard time maintaining my muscle tone even though I continue to work out the best I can. I get tired a lot now and the puking is getting to be a bit much but everyone keeps telling me its worth it and they are right...I know that.
So here I sit, waiting, wondering, and hoping that this is going to be the one...the treatment that gets it all done. Its been a long and winding road thus far, and i am sincerely hoping that the light at the end of the tunnel is getting close.
Props to my rents and to Caleb for sticking with me on all of this. I can't imagine how much it must take for them to put up with all of the stress that comes with all this. I know I owe them a lot.
Anyway, I don't really have much to say today. I am just praying that this next treatment and testing brings good news.
LiveSTRONG!
The doctor will argue that if there is no progress by week 4, that is no reason to stop. In reality, he may be right. And I will probably push to keep going another 3 or 4 weeks if there is no progress. I want to be certain that if I decide to stop, that I truly did everything within reason.
However, if it has shrunk and progress is being made, we will continue indefinitely until it is at a size where something more focused and more deadly to the tumor can be used. Hell, we may even be able to use the R word (remission).
I want to remain cautiously optimistic that this is going to work but I wont know for sure until next week and so once again, the waiting game continues.
In the interim, I continue to lose my hair...which is really hard to deal with but then they say that Bald is beautiful right? I also am having a hard time maintaining my muscle tone even though I continue to work out the best I can. I get tired a lot now and the puking is getting to be a bit much but everyone keeps telling me its worth it and they are right...I know that.
So here I sit, waiting, wondering, and hoping that this is going to be the one...the treatment that gets it all done. Its been a long and winding road thus far, and i am sincerely hoping that the light at the end of the tunnel is getting close.
Props to my rents and to Caleb for sticking with me on all of this. I can't imagine how much it must take for them to put up with all of the stress that comes with all this. I know I owe them a lot.
Anyway, I don't really have much to say today. I am just praying that this next treatment and testing brings good news.
LiveSTRONG!
Wednesday, April 16, 2008
Meet Zach
As I sit here getting ready for another round of treatment I am trying to think about what I want to blog about.
That being said, I think I am going to dedicate this entry to someone who has become a good friend of mine over the last little bit. Now, before I do that, I don't want anyone thinking, "Hey, why doesn't he blog about me". I am picking on this one person because we have had some amazing conversations over the last little bit and I think he really deserves an honourable mention. Besides, I have personally thanked everyone who has been so cool with me in the past and I will do so again over a series of blogs in which I intend to spend a whole entry on each person. Just kind of talking about them and what that person means to me.
So, without further delay, lets talk about my buddy Zach!
If you don't know who Zach is, he is the GM of Columbus in the league I am in. In terms of the SIMhl, Zach is one of the bright minds in the league. He runs a solid team and is in my opinion, one of the better GM's in there.
From a personal point, Zach has been a great friend to me. We often run into each other on the site and we start yakking about just about everything. He keeps me dialed into the blog by suggesting things I could talk about and his feedback in the comments section is always great.
Had it not been for Zach, I would not have had exposure to a music style that I was not all that close to. I am talking about Rap. If you read my blog on Rap you would have noticed that Zach did the intro.
I think one of the reasons we get along so well is that we are also quite close in age. I wont expose his age on here cuz that would not be fair but I will say he is not far off from me. I also like his dry sarcastic humour. Its funny, he can cut you up and have you laughing about it at the same time. I value that in a person. Thing is though, as much as he can cut you up, he can also pick you up too. On more than one occasion I have been a little down and Zach will come along and say something to me that just makes me feel good. It means a lot when he does that.
Now, dont get me wrong here, Zach is a great guy but I want to make it clear, he is also very straight. My kind words about him should not be read into as anything more than saying something nice about a really nice guy. In fact, part of what makes it so fun to chat with him is that he pokes a little fun at my bi-lifestyle. We joke about coming out of closets, gory details, and other stuff that usually leads to his trademark response, "Oh god". I always howl when I see him type that as I imagine him squirming in his chair trying to figure a way out.
I also want to say that I think Zach is a really smart guy. He told me he is an idiot but I totally disagree. He is incredibly smart. Don't let him tell you different. Even when he tries to play dumb you can see right through it.
Best thing about Zach though? The way he looks out for his friends. The guy has never met me, and yet, if you read the comments he leaves in my blog, you can tell right away that he is a quality guy. A guy's guy, someone you can count on, a wingman who is gonna look out for you. Like I said, I have never met him before and yet I think I am one of the lucky few who get to call him a friend.
Thanks Zach, you rock in my books!
LiveSTRONG!
That being said, I think I am going to dedicate this entry to someone who has become a good friend of mine over the last little bit. Now, before I do that, I don't want anyone thinking, "Hey, why doesn't he blog about me". I am picking on this one person because we have had some amazing conversations over the last little bit and I think he really deserves an honourable mention. Besides, I have personally thanked everyone who has been so cool with me in the past and I will do so again over a series of blogs in which I intend to spend a whole entry on each person. Just kind of talking about them and what that person means to me.
So, without further delay, lets talk about my buddy Zach!
If you don't know who Zach is, he is the GM of Columbus in the league I am in. In terms of the SIMhl, Zach is one of the bright minds in the league. He runs a solid team and is in my opinion, one of the better GM's in there.
From a personal point, Zach has been a great friend to me. We often run into each other on the site and we start yakking about just about everything. He keeps me dialed into the blog by suggesting things I could talk about and his feedback in the comments section is always great.
Had it not been for Zach, I would not have had exposure to a music style that I was not all that close to. I am talking about Rap. If you read my blog on Rap you would have noticed that Zach did the intro.
I think one of the reasons we get along so well is that we are also quite close in age. I wont expose his age on here cuz that would not be fair but I will say he is not far off from me. I also like his dry sarcastic humour. Its funny, he can cut you up and have you laughing about it at the same time. I value that in a person. Thing is though, as much as he can cut you up, he can also pick you up too. On more than one occasion I have been a little down and Zach will come along and say something to me that just makes me feel good. It means a lot when he does that.
Now, dont get me wrong here, Zach is a great guy but I want to make it clear, he is also very straight. My kind words about him should not be read into as anything more than saying something nice about a really nice guy. In fact, part of what makes it so fun to chat with him is that he pokes a little fun at my bi-lifestyle. We joke about coming out of closets, gory details, and other stuff that usually leads to his trademark response, "Oh god". I always howl when I see him type that as I imagine him squirming in his chair trying to figure a way out.
I also want to say that I think Zach is a really smart guy. He told me he is an idiot but I totally disagree. He is incredibly smart. Don't let him tell you different. Even when he tries to play dumb you can see right through it.
Best thing about Zach though? The way he looks out for his friends. The guy has never met me, and yet, if you read the comments he leaves in my blog, you can tell right away that he is a quality guy. A guy's guy, someone you can count on, a wingman who is gonna look out for you. Like I said, I have never met him before and yet I think I am one of the lucky few who get to call him a friend.
Thanks Zach, you rock in my books!
LiveSTRONG!
Tuesday, April 15, 2008
What Is It We Do?
So I was up late last night and gettin myself in all kinds of trouble from my boy Caleb because a certain GM on the SIMhl kept me chatting...not that I minded...but he knew I was going to pay..."oh god" LOL
At any rate the question I got was, what do Caleb and I do now that we live together. Its a great question. Well, I think we do what most teenage boys do...get your head out of the gutter people...we listen to music, watch music video's, and play games on the PS3.
We both pretty much like the same kinds of music. He has a pretty open mind about my music selections cuz he understands I am still being fully exposed to all kinds of music. I don't always like what he listens to but I tolerate it 8)
We have a few things we really like to do though. We like to go to the Tim Hortons for a coffee. Its nice because we get out of the house, go somewhere open and we get to sit back, have a coffee and just talk about what is going on with each other and the world around us. We dont try to solve world hunger, even though I would love to, but we talk about what each other is thinking, feeling, going through. Remember, he is a recovering addict so part of my role is to help him with that just as part of his role is to help me cope with Chemo and Cancer.
The one thing we have recently started to have fun with is play fighting. Now, we take it somewhat easy cuz the Cochlear does not like abuse but I still like to rough around with him. Usually this starts with him whining that I am on the computer and it leads to him getting up off the couch in the next room and coming over and grabbing a hold of me well saying something like, "Come on butch, bring it". Oh yeah, he likes to call me butch. I dunno why, its his name for me. That usually leads to me getting up and off we go. Sometimes I pin him to the floor and sometimes he pins me. Sometimes I am just getting out of bed and he jumps me which is a little more challenging cuz then the game becomes about who can embarass the other person the most. I know that the sexual tension around that is huge but it never leads to anything...not yet anyway. I think this type of playing around is a fun way for us to get some physical contact without it getting out of hand. I gotta be honest, just cuz I am dealing with illness does not mean I am not your average red blooded teenager...I got my urges just like the next guy. I am convinced that this play fighting is what will lead us to something more in the future. I am sure a few people are squirming in their chairs right now. Try not to, you know you would do the same if you were me LOL.
I also spend a lot of time teaching Caleb ASL. We usually head into the front room or somewhere with space so that I can stand with him in front of me and then teach him things. We dont do this for hours on end cuz it gets to be much but I try to teach him in terms of classes of words. Things like greetings, responses to greetings, the alphabet, weather, and so on. He is a fast learner and although he blows some signs (he called my mother a cat the other day) he does pretty good.
When were not doing something like that, Caleb is joining the gym I go to this week and will be working out with me. Hes not in bad shape or anything but he is one of these guys who could put on some serious muscle if he worked at it. I am not sure I want him all that strong because he could start kicking my ass in our play fights but its cool.
Aside from all that, one of my favourite things to do is to sit on the couch and cuddle up with him. I like to lean in close and feel his heart beating. I like the gentle manner in which his chest rises and falls as he breathes. Its even better when he is on the couch without his shirt so I can feel the warmth of his chest against me. It does not matter what is on the television or on the DVD player, for me, its those moments where time seems to stand still. I love it when he puts his hand on my head and just softly runs his hand along the side of my face. I think its moments like that where I feel most loved.
So yeah, that is pretty much what we do. I know there will be more and I am beginning to think that the sexual aspect of our relationship is not far from becoming a reality. I am nervous about it because I have never been with anyone before but I am confident that I will be okay. I always knew that I could wait for the right person to come along. Everyday I feel more and more confident that he is the right guy. The question then becomes, am I the right guy for him.
LiveSTRONG!
At any rate the question I got was, what do Caleb and I do now that we live together. Its a great question. Well, I think we do what most teenage boys do...get your head out of the gutter people...we listen to music, watch music video's, and play games on the PS3.
We both pretty much like the same kinds of music. He has a pretty open mind about my music selections cuz he understands I am still being fully exposed to all kinds of music. I don't always like what he listens to but I tolerate it 8)
We have a few things we really like to do though. We like to go to the Tim Hortons for a coffee. Its nice because we get out of the house, go somewhere open and we get to sit back, have a coffee and just talk about what is going on with each other and the world around us. We dont try to solve world hunger, even though I would love to, but we talk about what each other is thinking, feeling, going through. Remember, he is a recovering addict so part of my role is to help him with that just as part of his role is to help me cope with Chemo and Cancer.
The one thing we have recently started to have fun with is play fighting. Now, we take it somewhat easy cuz the Cochlear does not like abuse but I still like to rough around with him. Usually this starts with him whining that I am on the computer and it leads to him getting up off the couch in the next room and coming over and grabbing a hold of me well saying something like, "Come on butch, bring it". Oh yeah, he likes to call me butch. I dunno why, its his name for me. That usually leads to me getting up and off we go. Sometimes I pin him to the floor and sometimes he pins me. Sometimes I am just getting out of bed and he jumps me which is a little more challenging cuz then the game becomes about who can embarass the other person the most. I know that the sexual tension around that is huge but it never leads to anything...not yet anyway. I think this type of playing around is a fun way for us to get some physical contact without it getting out of hand. I gotta be honest, just cuz I am dealing with illness does not mean I am not your average red blooded teenager...I got my urges just like the next guy. I am convinced that this play fighting is what will lead us to something more in the future. I am sure a few people are squirming in their chairs right now. Try not to, you know you would do the same if you were me LOL.
I also spend a lot of time teaching Caleb ASL. We usually head into the front room or somewhere with space so that I can stand with him in front of me and then teach him things. We dont do this for hours on end cuz it gets to be much but I try to teach him in terms of classes of words. Things like greetings, responses to greetings, the alphabet, weather, and so on. He is a fast learner and although he blows some signs (he called my mother a cat the other day) he does pretty good.
When were not doing something like that, Caleb is joining the gym I go to this week and will be working out with me. Hes not in bad shape or anything but he is one of these guys who could put on some serious muscle if he worked at it. I am not sure I want him all that strong because he could start kicking my ass in our play fights but its cool.
Aside from all that, one of my favourite things to do is to sit on the couch and cuddle up with him. I like to lean in close and feel his heart beating. I like the gentle manner in which his chest rises and falls as he breathes. Its even better when he is on the couch without his shirt so I can feel the warmth of his chest against me. It does not matter what is on the television or on the DVD player, for me, its those moments where time seems to stand still. I love it when he puts his hand on my head and just softly runs his hand along the side of my face. I think its moments like that where I feel most loved.
So yeah, that is pretty much what we do. I know there will be more and I am beginning to think that the sexual aspect of our relationship is not far from becoming a reality. I am nervous about it because I have never been with anyone before but I am confident that I will be okay. I always knew that I could wait for the right person to come along. Everyday I feel more and more confident that he is the right guy. The question then becomes, am I the right guy for him.
LiveSTRONG!
Monday, April 14, 2008
Will You Take A Stand?
These are the days where we send men and women overseas to fight a war against terror. We send them over to take life in an effort to preserve it.
These are the days where we sit on the couch and we complain about our situation well our television takes a stand on the issues instead of us.
These are the days where the internet allows us to all be connected and with that connection others prey on the children who live next door to you.
These are the days where the gap between those who have and those who have not is growing exponentially.
Will you take a stand?
These are the days where medical science is working harder than ever to come up with cures to our most devastating illnesses well military scientists work on new and more effective ways to mame and kill the enemy
These are the days where charity is something that we do because we feel guilted into it and not because we feel enlightened enough to do it.
These are the days where we teach our children to lock the doors and close the blinds because the parks we use to play in are inhabited by gangs and drug addicts.
These are the days where 1 in 4 of us will suffer either a heart attack, stroke or cancer in our lifetime.
Will you take a stand?
On May 13th, the Lance Armstrong Foundation is declaring a LiveSTRONG Day. In a time where men in green uniforms head to far away places to take life, I ask all of you to wear yellow and help us preserve it!
On May 13th, I ask that you take just a few minutes to find something in your wardrobe that is yellow and wear it as a show of support for me and all of those who are fighting this horrible disease. If you have the chance, spend the $1 it takes and pick up a Livestrong bracelet and wear it proudly knowing that you have just helped make a difference.
On May 13th, send a message to the world that the army of green overseas has nothing on the Yellow Army that walks the streets of the world fighting to save the lives of those who fight the fight against Cancer.
On May 13th, will you take a stand for Cancer? Will you take a stand for the Yellow Army? Will you take a stand for me?
LiveSTRONG!
These are the days where we sit on the couch and we complain about our situation well our television takes a stand on the issues instead of us.
These are the days where the internet allows us to all be connected and with that connection others prey on the children who live next door to you.
These are the days where the gap between those who have and those who have not is growing exponentially.
Will you take a stand?
These are the days where medical science is working harder than ever to come up with cures to our most devastating illnesses well military scientists work on new and more effective ways to mame and kill the enemy
These are the days where charity is something that we do because we feel guilted into it and not because we feel enlightened enough to do it.
These are the days where we teach our children to lock the doors and close the blinds because the parks we use to play in are inhabited by gangs and drug addicts.
These are the days where 1 in 4 of us will suffer either a heart attack, stroke or cancer in our lifetime.
Will you take a stand?
On May 13th, the Lance Armstrong Foundation is declaring a LiveSTRONG Day. In a time where men in green uniforms head to far away places to take life, I ask all of you to wear yellow and help us preserve it!
On May 13th, I ask that you take just a few minutes to find something in your wardrobe that is yellow and wear it as a show of support for me and all of those who are fighting this horrible disease. If you have the chance, spend the $1 it takes and pick up a Livestrong bracelet and wear it proudly knowing that you have just helped make a difference.
On May 13th, send a message to the world that the army of green overseas has nothing on the Yellow Army that walks the streets of the world fighting to save the lives of those who fight the fight against Cancer.
On May 13th, will you take a stand for Cancer? Will you take a stand for the Yellow Army? Will you take a stand for me?
LiveSTRONG!
Sunday, April 13, 2008
A New Start
Things really are different when you welcome someone new into your home. A lot of things change and sometimes they create some very funny moments.
This blog entry is not going to be a long one. I just wanted to share some of the comings and goings of our new house guest...Caleb.
When we shared time and space at the shelter it was different. You don't really get comfortable. You more or less exist and try not to get in anyone else's way. When you are in a house and you have all the comforts of a home you tend to be a little more relaxed. Routines that you are use to suddenly need to be changed to accommodate the new guy. When I get up in the morning I like to get up out of bed, head to the shower and get ready for breakfast. Thats fine and well when your on your own. I got up as usual, headed to the shower, showered and headed back to my...er...our room. So I am getting dressed and the door opens and in walks Caleb to get something. Now, fortunately I was only in a partial state of undress but it scared the bejesus out of me. We ended up laughing about it as we discussed the fact that we are going to have to get used to this arrangement and preserve modesty as much as is possible. What I did not tell him is that I tend to do my level best to catch him in a compromising situation so I can poke some fun at him LOL.
The breakfast routine also needs to be considered. My family prays before each meal as a family. Caleb is not a religious guy so there is some adjusting to be done there. He goes along with it but I know its all new to him.
Oh, did I also mention that he snores...oh man, I mean, he snores pretty loud. I never really noticed until I was in a confined space with him. Its funny though, and I laugh over it.
Another thing is the funny way he rolls his pairs of socks into balls...I dunno, I dont do that but its funny to watch him carefully roll each pair LOL...little things I guess.
I guess what I am saying is that things are different at home in a good way. We are getting used to being together in the house and its been a great opening weekend with him here. We still hug at night, we still cuddle up on the couch to watch tv...when my rents are not home...and we still feel connected like we did before he moved in.
I hope this is the beginning of something very special. It feels like it is, but I guess only time will tell.
LiveSTRONG!
This blog entry is not going to be a long one. I just wanted to share some of the comings and goings of our new house guest...Caleb.
When we shared time and space at the shelter it was different. You don't really get comfortable. You more or less exist and try not to get in anyone else's way. When you are in a house and you have all the comforts of a home you tend to be a little more relaxed. Routines that you are use to suddenly need to be changed to accommodate the new guy. When I get up in the morning I like to get up out of bed, head to the shower and get ready for breakfast. Thats fine and well when your on your own. I got up as usual, headed to the shower, showered and headed back to my...er...our room. So I am getting dressed and the door opens and in walks Caleb to get something. Now, fortunately I was only in a partial state of undress but it scared the bejesus out of me. We ended up laughing about it as we discussed the fact that we are going to have to get used to this arrangement and preserve modesty as much as is possible. What I did not tell him is that I tend to do my level best to catch him in a compromising situation so I can poke some fun at him LOL.
The breakfast routine also needs to be considered. My family prays before each meal as a family. Caleb is not a religious guy so there is some adjusting to be done there. He goes along with it but I know its all new to him.
Oh, did I also mention that he snores...oh man, I mean, he snores pretty loud. I never really noticed until I was in a confined space with him. Its funny though, and I laugh over it.
Another thing is the funny way he rolls his pairs of socks into balls...I dunno, I dont do that but its funny to watch him carefully roll each pair LOL...little things I guess.
I guess what I am saying is that things are different at home in a good way. We are getting used to being together in the house and its been a great opening weekend with him here. We still hug at night, we still cuddle up on the couch to watch tv...when my rents are not home...and we still feel connected like we did before he moved in.
I hope this is the beginning of something very special. It feels like it is, but I guess only time will tell.
LiveSTRONG!
Saturday, April 12, 2008
Praying For Time
Time is a precious commodity and it is one we can not buy or sell. We each have an oversized hourglass and the sands of time flow freely through until our sand is gone.
I keep thinking about time these days. Its funny how I think about these things when things are going really well. I almost wish that time could stand still so that I could do much much more.
Today I am making my way to the Salvation Army where I will help serve lunch and dinner to those who are far less fortunate than I am. Well I am doing that my boyfriend will move in with us. Some would say that I should be at home helping him move in and get settled. I was going to do that until I got an email from a friend of mine. Let me explain...
The title of the email was, Pray For Time. I thought that was funny, and so I kept reading on. It went on to talk about a program I missed on TV called, "Idol Gives Back". I usually watch American Idol but I missed this special episode and apparently there was this very moving song called "Praying For Time" that was sung on there and this friend of mine thought of me. The email went on to say that they were thinking of the stuff I have been doing around helping people and stuff like that and that they felt very touched by the song. In the email was a link to the a video with the original singer, George Michael. I clicked on the link and I wept.
The lyrics in this song touched me deeply and made me realize that there is still so much I need to do and still so much we all need to do. This song did things to me that no other song before it has done. I find myself so very attached to it that I could not stop playing it. Not only did it make me think about how we all need to pay it forward, it also made me think about my fight with Cancer...I am starting to get emotional as I type this, my eyes are getting moist and I am almost feeling as though I need a break from typing this but my fingers wont stop. The emotion in my blood is raging and I need to get this message out and I need you to read it and I need you to stay with me. God I need to do this so badly, I need to get the word out. I feel it in my soul...it has touched me deeply. Whether its Cancer, or giving to others or just paying it forward, I listen to this song and I feel so completely overwhelmed about how much more I need to do. I need to do my penance to pay back so that I might reap some favour from God to let me beat this. Maybe if I just do one more thing, help one more person, give up one more material thing. No matter what I do I cant stop praying for more time.
Please, if you can do just one thing for me, I ask you to do this; listen to this song, listen carefully to the message it sends and then go out and pay it forward to someone you don't know. Anyone, it does not matter who it is, but please go out for me and show someone who is much less fortunate than you that you care.
I have done something in my life that I am being asked to deal with all of this and as I cling to the material things I have been given in this life, I question what it is that I did and I question what it is that I need to do before I can feel as though my penance is paid. As George sings it, these are the days of the beggars and the choosers. I will not be a beggar, I will do my part and I will pay it forward in the hopes that God pays it forward to me. I want my life to have meaning, I want it to have been worth it, I want all my suffering, anger, fear, tears, pain, love, and hope to be for something. I want it to all have been worth it. I am rambling, my emotions are flying out of me as my fingers type madly to keep up with all the things that are pent up in my soul. I can only pray that God is still keeping score...please, I just don't want to die! I'm shaking, I'm scared, my heart is on my sleeve and I am opening up like I never have before and I am afraid it will freak everyone out as a part of my soul lets go and comes to the surface...can everyone handle it, can you handle me when I am like this? Can you still love me when I am like this? Can you help me pray for time?
All I can do is pray for time and hang on to hope when there is no hope to speak of.
LiveSTRONG!
I keep thinking about time these days. Its funny how I think about these things when things are going really well. I almost wish that time could stand still so that I could do much much more.
Today I am making my way to the Salvation Army where I will help serve lunch and dinner to those who are far less fortunate than I am. Well I am doing that my boyfriend will move in with us. Some would say that I should be at home helping him move in and get settled. I was going to do that until I got an email from a friend of mine. Let me explain...
The title of the email was, Pray For Time. I thought that was funny, and so I kept reading on. It went on to talk about a program I missed on TV called, "Idol Gives Back". I usually watch American Idol but I missed this special episode and apparently there was this very moving song called "Praying For Time" that was sung on there and this friend of mine thought of me. The email went on to say that they were thinking of the stuff I have been doing around helping people and stuff like that and that they felt very touched by the song. In the email was a link to the a video with the original singer, George Michael. I clicked on the link and I wept.
The lyrics in this song touched me deeply and made me realize that there is still so much I need to do and still so much we all need to do. This song did things to me that no other song before it has done. I find myself so very attached to it that I could not stop playing it. Not only did it make me think about how we all need to pay it forward, it also made me think about my fight with Cancer...I am starting to get emotional as I type this, my eyes are getting moist and I am almost feeling as though I need a break from typing this but my fingers wont stop. The emotion in my blood is raging and I need to get this message out and I need you to read it and I need you to stay with me. God I need to do this so badly, I need to get the word out. I feel it in my soul...it has touched me deeply. Whether its Cancer, or giving to others or just paying it forward, I listen to this song and I feel so completely overwhelmed about how much more I need to do. I need to do my penance to pay back so that I might reap some favour from God to let me beat this. Maybe if I just do one more thing, help one more person, give up one more material thing. No matter what I do I cant stop praying for more time.
Please, if you can do just one thing for me, I ask you to do this; listen to this song, listen carefully to the message it sends and then go out and pay it forward to someone you don't know. Anyone, it does not matter who it is, but please go out for me and show someone who is much less fortunate than you that you care.
I have done something in my life that I am being asked to deal with all of this and as I cling to the material things I have been given in this life, I question what it is that I did and I question what it is that I need to do before I can feel as though my penance is paid. As George sings it, these are the days of the beggars and the choosers. I will not be a beggar, I will do my part and I will pay it forward in the hopes that God pays it forward to me. I want my life to have meaning, I want it to have been worth it, I want all my suffering, anger, fear, tears, pain, love, and hope to be for something. I want it to all have been worth it. I am rambling, my emotions are flying out of me as my fingers type madly to keep up with all the things that are pent up in my soul. I can only pray that God is still keeping score...please, I just don't want to die! I'm shaking, I'm scared, my heart is on my sleeve and I am opening up like I never have before and I am afraid it will freak everyone out as a part of my soul lets go and comes to the surface...can everyone handle it, can you handle me when I am like this? Can you still love me when I am like this? Can you help me pray for time?
All I can do is pray for time and hang on to hope when there is no hope to speak of.
LiveSTRONG!
Friday, April 11, 2008
Welcome Home Caleb
It was a really big night last night. For the first time, I brought Caleb home with me. I met him at Tim's and we walked back to my house. The anticipation of meeting my parents was killing both of us. The nerves and the butterflies were at full force.
As we got closer the panic and anxiety continued to swell. I don't know why either of us were so panicked. We knew that this was my parents idea and yet at the same time, the nerves were still kicking up.
We got to the door and I opened it up to let him in. We came in together, hand in hand, and he kicked off his shoes and made his way with me to the Den where my parents were already waiting.
As we walked in both of my parents stood up. Without missing a beat, Caleb signed to them, "Good Evening, how are you doing". I was so proud of him. I have been teaching him basic greetings in ASL and he told me he intended to come in and sign to them as his first act of saying hello. The look on my parents faces were priceless. I don't think they figured he was going to do that.
Instead of signing back they said good evening to him and extended a hand to shake his hand. Formalities over with we all sat down and my mom offered to get coffee etc.
My dad studied Caleb as if he were some sort of living piece of art. I think he was expecting some feminine looking/acting guy. Caleb is not that at all. He is very masculine in his mannerisms and I think my dad liked that.
With mom having returned with coffee and some of her awesome lemon pound cake, the discussion began in earnest. The rules were again discussed and the requirements of the arrangement were confirmed with everyone. A few other things were added around public displays of affection. My parents asked that we not be overly affectionate in front of them, that is, they don't want any of that face sucking going on in front of them. They simply said that they don't do that in front of me and asked that I don't do it front of them (the thought of my parents doing that at all makes me nauseas LOL). They went on to say that if we wanted to have that level of intimacy, we have a room and they are often not home and we are welcome to be affectionate with each other in that way when they are not around. The again reminded us that sleeping together at night was not an option and that they would like to keep it that way.
All in all, I think it went really well. As of Friday we are going to start moving Caleb in and by the weekend he will be a fully functioning member of our household. I still can't believe it but its really happening and I am very excited about it.
A little while ago I wrote about how upset I was with my parents and how I felt they were being a little bit over the top. I was more than mad, I was really angry with them but now I realize that they just needed time to get their bearings. They love me and they want me happy and I know that is why they are allowing this to happen. I know that seeing Caleb will be a daily reminder of how they must feel they failed me and yet I don't think they failed me at all. I realize how much they love me to allow this to happen. I tried to tell them that but sometimes the words are hard to get out. As excited as I am, I am also nervous too. I have never been this close to someone, especially another guy and at the same time it just feels so very right.
I have the strength to do anything I want and I know that I can do anything I want in life if I set my mind to it. I can beat any challenge...I believe that now which is how I know I am going to beat my Cancer.
LiveSTRONG
As we got closer the panic and anxiety continued to swell. I don't know why either of us were so panicked. We knew that this was my parents idea and yet at the same time, the nerves were still kicking up.
We got to the door and I opened it up to let him in. We came in together, hand in hand, and he kicked off his shoes and made his way with me to the Den where my parents were already waiting.
As we walked in both of my parents stood up. Without missing a beat, Caleb signed to them, "Good Evening, how are you doing". I was so proud of him. I have been teaching him basic greetings in ASL and he told me he intended to come in and sign to them as his first act of saying hello. The look on my parents faces were priceless. I don't think they figured he was going to do that.
Instead of signing back they said good evening to him and extended a hand to shake his hand. Formalities over with we all sat down and my mom offered to get coffee etc.
My dad studied Caleb as if he were some sort of living piece of art. I think he was expecting some feminine looking/acting guy. Caleb is not that at all. He is very masculine in his mannerisms and I think my dad liked that.
With mom having returned with coffee and some of her awesome lemon pound cake, the discussion began in earnest. The rules were again discussed and the requirements of the arrangement were confirmed with everyone. A few other things were added around public displays of affection. My parents asked that we not be overly affectionate in front of them, that is, they don't want any of that face sucking going on in front of them. They simply said that they don't do that in front of me and asked that I don't do it front of them (the thought of my parents doing that at all makes me nauseas LOL). They went on to say that if we wanted to have that level of intimacy, we have a room and they are often not home and we are welcome to be affectionate with each other in that way when they are not around. The again reminded us that sleeping together at night was not an option and that they would like to keep it that way.
All in all, I think it went really well. As of Friday we are going to start moving Caleb in and by the weekend he will be a fully functioning member of our household. I still can't believe it but its really happening and I am very excited about it.
A little while ago I wrote about how upset I was with my parents and how I felt they were being a little bit over the top. I was more than mad, I was really angry with them but now I realize that they just needed time to get their bearings. They love me and they want me happy and I know that is why they are allowing this to happen. I know that seeing Caleb will be a daily reminder of how they must feel they failed me and yet I don't think they failed me at all. I realize how much they love me to allow this to happen. I tried to tell them that but sometimes the words are hard to get out. As excited as I am, I am also nervous too. I have never been this close to someone, especially another guy and at the same time it just feels so very right.
I have the strength to do anything I want and I know that I can do anything I want in life if I set my mind to it. I can beat any challenge...I believe that now which is how I know I am going to beat my Cancer.
LiveSTRONG
Thursday, April 10, 2008
I Am The Lucky One
I have decided that Chemo really sucks. After having another round of it on Wednesday, and having another round of nausea and general fatigue the rest of the day I have decided that I am no longer friends with the Chemo people. There, I feel much better now that I have said that.
I got up this morning and I felt pretty good. I was hungry and that is always a good sign. I slept in a little and that really helped too. When I get up in the morning I don’t usually get dressed straight away, I prefer to put on my Toronto Maple Leafs flannel PJ pants and roam around the house. My parents think I am just trying to show off the condition I am in but really, it is just that I am too damn lazy to get dressed right away. I made my way down to the kitchen to get myself a cup of coffee and start the day. I opted for an instant coffee and grabbed a seat at the breakfast bar and picked up the newspaper. My dad is a fanatic about newspapers. We get the Star, Record, and the National Post. I usually opt for the Star for the sports section and the Record for the local news.
I sat there, looking out the window and just thinking. Its amazing when you have time on your hands, the things you can think of. I was thinking about the Chemo treatments I have been enduring and how much I want to beat this disease. I don’t want to die, its really that simple. I know that nobody wants to die, unless they have some kind of death wish. The thing is, there is still so much I want to do. I look at my bucket list and I think that I have managed to accomplish a lot but there is still so much more that I would like to do. I want to help people, that’s what I really want to do. I want to do more than I am doing right now. I want to be more helpful and I want to have more of an impact on the world I a living in. I just don’t know what to do next. I have hung out with homeless people, been to a youth shelter, I have spent time with other terminally ill kids and just done my best to put a smile on their faces, I have tried to teach some of the homeless kids I ran into some ASL, and now I don’t know what to do. I have a full time relationship with Caleb and that is amazing, and I don’t think I would have found him had I not gone on the adventure I went on and yet I still feel as though there is more I need to do. I just wish I knew what to do next.
I sat there drinking my coffee and thinking some more. Its amazing how your life changes when you find out that your dieing. I get kind of mad at myself sometimes because I never stepped back and thought about doing this stuff until I found out what was happening to me. I almost feel as though I was being incredibly selfish because I was not more helpful to other people before that. I was so absorbed in my own deaf world that I completely forgot those around me.
I think what I need to do next is go and work in a soup kitchen. I think I need to go and be on the front lines in an adult homeless shelter and serve food to those who are homeless. I think I need to immerse myself in that and help out the best I can. I think I need to spend some time sitting beside them, shoulder to shoulder, and actually listen to what they have to say instead of pretending that they don’t exist. Maybe that is what I need to do now. I am pretty handy in the kitchen so I think that would be a good fit for me. Hey, I think I just answered my own question about what I need to do next. That was easy, who knew that a blog where I can just type whatever pops into my head would help me figure this out. Cool!
As I take the last few sips of my coffee and admire my own reflection in the mirror, I am reminded of everything I have. I got up this morning from a warm bed, clean linens. I put on a clean pair of PJ pants, went downstairs and started up the kettle and just made myself a cup of coffee without having to beg for it. I glanced at a selection of newspapers that just sat there waiting for me. I sat at a kitchen bar with just about anything I wanted right at hand. I sat there in the warm glow of the sun coming through the window in nothing more than my flannel pants. The heat in the house keeping me comfortable. I did not have to climb out of a cot, with less than clean sheets in clothing that I have worn or god knows how many days. I did not need to get in line for a meager cup of coffee and a modest warm breakfast. I did not have to watch over my shoulder to see if there was anyone looking to take something from me. I did not have to make my way out into the cool morning to find the best corner to beg for money.
My name is Derry, I am 19, I have a home, a warm bed, a good family, a boyfriend who loves me, food, clothing, and all the comforts. My name is Derry, I am 19, I was deaf but have been given the gift of hearing, I have Cancer but have been given the gift of modern medicine.
My name is Derry, I am 19 and not expected to live past 21, and yet I believe I am the luckiest 19 year old on the face of the earth because I have Hope.
LiveSTRONG!
I got up this morning and I felt pretty good. I was hungry and that is always a good sign. I slept in a little and that really helped too. When I get up in the morning I don’t usually get dressed straight away, I prefer to put on my Toronto Maple Leafs flannel PJ pants and roam around the house. My parents think I am just trying to show off the condition I am in but really, it is just that I am too damn lazy to get dressed right away. I made my way down to the kitchen to get myself a cup of coffee and start the day. I opted for an instant coffee and grabbed a seat at the breakfast bar and picked up the newspaper. My dad is a fanatic about newspapers. We get the Star, Record, and the National Post. I usually opt for the Star for the sports section and the Record for the local news.
I sat there, looking out the window and just thinking. Its amazing when you have time on your hands, the things you can think of. I was thinking about the Chemo treatments I have been enduring and how much I want to beat this disease. I don’t want to die, its really that simple. I know that nobody wants to die, unless they have some kind of death wish. The thing is, there is still so much I want to do. I look at my bucket list and I think that I have managed to accomplish a lot but there is still so much more that I would like to do. I want to help people, that’s what I really want to do. I want to do more than I am doing right now. I want to be more helpful and I want to have more of an impact on the world I a living in. I just don’t know what to do next. I have hung out with homeless people, been to a youth shelter, I have spent time with other terminally ill kids and just done my best to put a smile on their faces, I have tried to teach some of the homeless kids I ran into some ASL, and now I don’t know what to do. I have a full time relationship with Caleb and that is amazing, and I don’t think I would have found him had I not gone on the adventure I went on and yet I still feel as though there is more I need to do. I just wish I knew what to do next.
I sat there drinking my coffee and thinking some more. Its amazing how your life changes when you find out that your dieing. I get kind of mad at myself sometimes because I never stepped back and thought about doing this stuff until I found out what was happening to me. I almost feel as though I was being incredibly selfish because I was not more helpful to other people before that. I was so absorbed in my own deaf world that I completely forgot those around me.
I think what I need to do next is go and work in a soup kitchen. I think I need to go and be on the front lines in an adult homeless shelter and serve food to those who are homeless. I think I need to immerse myself in that and help out the best I can. I think I need to spend some time sitting beside them, shoulder to shoulder, and actually listen to what they have to say instead of pretending that they don’t exist. Maybe that is what I need to do now. I am pretty handy in the kitchen so I think that would be a good fit for me. Hey, I think I just answered my own question about what I need to do next. That was easy, who knew that a blog where I can just type whatever pops into my head would help me figure this out. Cool!
As I take the last few sips of my coffee and admire my own reflection in the mirror, I am reminded of everything I have. I got up this morning from a warm bed, clean linens. I put on a clean pair of PJ pants, went downstairs and started up the kettle and just made myself a cup of coffee without having to beg for it. I glanced at a selection of newspapers that just sat there waiting for me. I sat at a kitchen bar with just about anything I wanted right at hand. I sat there in the warm glow of the sun coming through the window in nothing more than my flannel pants. The heat in the house keeping me comfortable. I did not have to climb out of a cot, with less than clean sheets in clothing that I have worn or god knows how many days. I did not need to get in line for a meager cup of coffee and a modest warm breakfast. I did not have to watch over my shoulder to see if there was anyone looking to take something from me. I did not have to make my way out into the cool morning to find the best corner to beg for money.
My name is Derry, I am 19, I have a home, a warm bed, a good family, a boyfriend who loves me, food, clothing, and all the comforts. My name is Derry, I am 19, I was deaf but have been given the gift of hearing, I have Cancer but have been given the gift of modern medicine.
My name is Derry, I am 19 and not expected to live past 21, and yet I believe I am the luckiest 19 year old on the face of the earth because I have Hope.
LiveSTRONG!
Wednesday, April 9, 2008
This Is All I Ever Wanted
It has been a real roller coaster as of late and the other night was a real peak for me. I am so excited and that excitement was connected to meeting with Caleb to lay all this information on him and see what he thought. I wanted him to come and meet the Fokkers (rents) as soon as possible so that maybe, just maybe, he could be moved in on the weekend.
We had already agreed to meet at Tim Hortons for a coffee and go from there but he had no idea that I was about to rock his world in a big way.
He sat down across from me and I just began to tell him everything that happened and everything that was said. I don't think I took a breath the entire time. I just wanted to get it all out and see his reaction. I also was hoping against hope that he would go for it.
When I finally shut up and let him get a word in edge wise, he casually leaned forward, and said ok. I couldn't believe it, I really thought it would take more convincing but it didn't. He was actually ok with all the rules and stuff. He said he understood the rules and that he agreed that there needed to be some kind of house rules so that everyone knew where they stood. With that said, he said he would meet my parents on Thursday. I asked him why Thursday and he reminded me that it would not be good to do this on Wednesday as I would be having a chemo treatment and that I would be a little bag of shit all night and that would make for bad timing. I guess I agree and Thursday will work just fine. He said that if everything goes well that he should be able to move in by the weekend.
You really had to see his face. He could not believe that people who didn't even know him would be willing to do this for him. The rest of the night I was bombarded with questions around why the rents would want to do this for him and why did they care so much about him and stuff like that. He said he was very excited and grateful and all that stuff in between. I told him to make sure he tells my rents all of this because they are the ones who are allowing it to happen.
The one funny moment out of the night came around the not sleeping together rule which made both of us kind of laugh and just roll our eyes. Adults always seem to think that people are age have only one thing on our minds....well, it is on our minds but its not the biggest thing LOL.
We joked about how the sleeping arrangements were going to be just like the shelter and we both laughed about how the rules were quite similar about doing work, attending classes, stuff like that. I think in some respects that was the idea.
So there we have it. I can not believe it, this is all I ever wanted and now I have it. I know there are those who will continue to say that all good things must come to an end. I hope they are wrong. I know when this whole thing started...with that crazy kiss in the street, nobody really knew where it was going but here we are, still hangin in there and still makin it work. He has seen me at my worst, and lets face it, seeing me leaning over a toilet tossing my stomach after a vicious round of Chemo is about as bad as it gets and yet he didn't flinch. I love Caleb, more than life itself and I know he loves me. This next step of living in the same house will certainly tell me whether this is something that is meant to be. You can't hide your little quirks and flaws when you live together and for some reason, I think I am going to love him even more because of those funny quirks we all have. I am also going to really enjoy teaching him ASL. The thought of him signing and talking at the same time just gives me chills. To think he cares that much to learn ASL is amazing.
Anyway, I am rambling on with a flush of excitement over the future. I don't really know how long I am going to be here but what a ride its going to be. I know with big peaks often come big valleys but who knows, maybe the valleys wont happen...maybe it will just be one long amazing ride.
I am attaching a song from Last Year's Canadian Idol winner, Brian Melo. I can't say I listen to a lot of his music but this one song is a perfect fit for this entry and the whole roller coaster I have been riding. Take a moment to listen to it and I think you will agree that it just seems to fit. The song is called, "All I Ever Wanted"
LiveSTRONG
We had already agreed to meet at Tim Hortons for a coffee and go from there but he had no idea that I was about to rock his world in a big way.
He sat down across from me and I just began to tell him everything that happened and everything that was said. I don't think I took a breath the entire time. I just wanted to get it all out and see his reaction. I also was hoping against hope that he would go for it.
When I finally shut up and let him get a word in edge wise, he casually leaned forward, and said ok. I couldn't believe it, I really thought it would take more convincing but it didn't. He was actually ok with all the rules and stuff. He said he understood the rules and that he agreed that there needed to be some kind of house rules so that everyone knew where they stood. With that said, he said he would meet my parents on Thursday. I asked him why Thursday and he reminded me that it would not be good to do this on Wednesday as I would be having a chemo treatment and that I would be a little bag of shit all night and that would make for bad timing. I guess I agree and Thursday will work just fine. He said that if everything goes well that he should be able to move in by the weekend.
You really had to see his face. He could not believe that people who didn't even know him would be willing to do this for him. The rest of the night I was bombarded with questions around why the rents would want to do this for him and why did they care so much about him and stuff like that. He said he was very excited and grateful and all that stuff in between. I told him to make sure he tells my rents all of this because they are the ones who are allowing it to happen.
The one funny moment out of the night came around the not sleeping together rule which made both of us kind of laugh and just roll our eyes. Adults always seem to think that people are age have only one thing on our minds....well, it is on our minds but its not the biggest thing LOL.
We joked about how the sleeping arrangements were going to be just like the shelter and we both laughed about how the rules were quite similar about doing work, attending classes, stuff like that. I think in some respects that was the idea.
So there we have it. I can not believe it, this is all I ever wanted and now I have it. I know there are those who will continue to say that all good things must come to an end. I hope they are wrong. I know when this whole thing started...with that crazy kiss in the street, nobody really knew where it was going but here we are, still hangin in there and still makin it work. He has seen me at my worst, and lets face it, seeing me leaning over a toilet tossing my stomach after a vicious round of Chemo is about as bad as it gets and yet he didn't flinch. I love Caleb, more than life itself and I know he loves me. This next step of living in the same house will certainly tell me whether this is something that is meant to be. You can't hide your little quirks and flaws when you live together and for some reason, I think I am going to love him even more because of those funny quirks we all have. I am also going to really enjoy teaching him ASL. The thought of him signing and talking at the same time just gives me chills. To think he cares that much to learn ASL is amazing.
Anyway, I am rambling on with a flush of excitement over the future. I don't really know how long I am going to be here but what a ride its going to be. I know with big peaks often come big valleys but who knows, maybe the valleys wont happen...maybe it will just be one long amazing ride.
I am attaching a song from Last Year's Canadian Idol winner, Brian Melo. I can't say I listen to a lot of his music but this one song is a perfect fit for this entry and the whole roller coaster I have been riding. Take a moment to listen to it and I think you will agree that it just seems to fit. The song is called, "All I Ever Wanted"
LiveSTRONG
Tuesday, April 8, 2008
This Feels Like Home To Me
I know everyone has been patiently waiting and wondering what the outcome was last night. I am going to give everyone the whole story so well all know what is going on.
My rents got home at their usual time and dinner was started. I came down to help thinking that maybe they were gonna talk to me and all I got from my Dad was, “Derry, we will see you at dinner, why don’t you just wait upstairs until we are ready for you”. Ready for me? The last time my Dad said that to me I ended up winning an all expense paid trip over his knee. Well, not wanting to make em mad, I headed upstairs and just messed around on the computer for a bit.
I could smell dinner in the air, and it smelled good. They were making my favourite, Lasagna. Why were they making my favourite dinner? This could not be good. I felt as though I was being buttered up so that they could drop kick me out of the house. I gotta say, I was feeling very uncomfortable over the whole thing. I felt like a convict on death row waiting for his last meal.
After some time I was called to dinner. I grabbed my seat and we said grace as we usually do. Mom began serving and again the horrible silence. Once we all had our plates and had a few bites, it began. My Dad started the conversation. They started by telling me that the last 2 weeks had been the hardest two weeks they have ever spent. They thought dealing with my Cancer was hard but that this was just something they were not prepared for. They felt they failed me as parents and that might have been the reason why I chose this lifestyle…..I stopped them there. This was not a choice…I don’t believe you choose to live like this. I am a firm believer in genetics and I believe that I was genetically programmed to be this way. Just like you don’t choose to get Cancer, you just get it and may never know why. My Dad, corrected himself in an effort to respect my opinion and he continued. He went on to say that they had spent the last two weeks trying to figure out what was best for me and for them. They want me to be happy; they don’t want whatever time we have left together as a family to be spent fighting or hating on each other. He went on to say that though he nor my Mom will ever understand my lifestyle, they wont ridicule or cut me out over it either. He went on to say that it was my life and that whatever made me feel good on the inside was fine with them.
Dad stopped and Mom continued…it felt like I was caught in a movie…Mom went on to say that this love I have for Caleb may not seem natural to her it was also not natural for her to not love her Son or respect the adult choices he makes. She did not want to see me leave over something like that. She went on to say that her and Dad had talked at length and they want to meet Caleb…and soon. I stopped them and asked what the deal was with my room. They looked at each other as if they were unsure as to who was going to answer that…as if I had somehow jumped the script and now they had lost their page.
Dad decided to take the lead and said that he did not want me sneaking around with Caleb. He did not want me in shelters, or other less desirable places. He also did not want Caleb, whom he said was clearly going to be a part of this family for the next however long, to be running around with their son in a veil of secrecy. The room was changed to accommodate Caleb. I could not believe what I was hearing. My parents were inviting my boyfriend to live with us…I was speechless. Dad went on to say that there were going to be ground rules for both Caleb and I to follow.
Mom began to explain and here is what I was told:
Rules:
1) Caleb must continue to attend his addiction course
2) Caleb must learn ASL
3) Caleb and Derry will both have a 1 AM curfew to be observed
4) Two beds means no sleeping together
5) Caleb must find meaningful part time employment within one month of arriving here and must contribute to the household by doing chores
6) Caleb will also begin a High School Equivalency program once he graduates from his Addiction program
I could not believe it. I just couldn’t. Mom said that these rules were not mean to be overbearing or bossy. They were meant to protect me, the integrity of our household and help Caleb do something positive. I was also told that this arrangement would be terminated if any of the rules were broken. There would also be a 3 month probationary period in which we would be expected to demonstrate to them that we could handle this arrangement with maturity.
Dad chimed in and said that he and Mom wanted to meet Caleb no later than Friday and that he could then move in at his discretion assuming he is comfortable with the rules and the arrangement.
Once it was all said and done I couldn’t think of what to say so all I said was thank you. I didn’t know what else I could or should say at the moment. I got up and hugged them both very tight and told them how much I loved them and how hard it had been to leave them like that. How much it hurt to know that I was hurting them and that I really missed them. When my Dad wrapped his arms around me I began to sob like a little kid. I was just so relieved and happy at the same time that it was like a gate broke and my emotions just ran wild.
I asked to be excused from dinner and made my way to my room. I needed to absorb all of this and figure out how to tell all this to Caleb. That is what I am going to do next. Meet Caleb and tell him what is going on. I hope he agrees to all this. I really want him with me and I hope he goes along with it. I know the choice is his but hot food, hot shower, and a real home are all his if he can just go along with the rules. I can’t wait to tell him.
LiveSTRONG!
My rents got home at their usual time and dinner was started. I came down to help thinking that maybe they were gonna talk to me and all I got from my Dad was, “Derry, we will see you at dinner, why don’t you just wait upstairs until we are ready for you”. Ready for me? The last time my Dad said that to me I ended up winning an all expense paid trip over his knee. Well, not wanting to make em mad, I headed upstairs and just messed around on the computer for a bit.
I could smell dinner in the air, and it smelled good. They were making my favourite, Lasagna. Why were they making my favourite dinner? This could not be good. I felt as though I was being buttered up so that they could drop kick me out of the house. I gotta say, I was feeling very uncomfortable over the whole thing. I felt like a convict on death row waiting for his last meal.
After some time I was called to dinner. I grabbed my seat and we said grace as we usually do. Mom began serving and again the horrible silence. Once we all had our plates and had a few bites, it began. My Dad started the conversation. They started by telling me that the last 2 weeks had been the hardest two weeks they have ever spent. They thought dealing with my Cancer was hard but that this was just something they were not prepared for. They felt they failed me as parents and that might have been the reason why I chose this lifestyle…..I stopped them there. This was not a choice…I don’t believe you choose to live like this. I am a firm believer in genetics and I believe that I was genetically programmed to be this way. Just like you don’t choose to get Cancer, you just get it and may never know why. My Dad, corrected himself in an effort to respect my opinion and he continued. He went on to say that they had spent the last two weeks trying to figure out what was best for me and for them. They want me to be happy; they don’t want whatever time we have left together as a family to be spent fighting or hating on each other. He went on to say that though he nor my Mom will ever understand my lifestyle, they wont ridicule or cut me out over it either. He went on to say that it was my life and that whatever made me feel good on the inside was fine with them.
Dad stopped and Mom continued…it felt like I was caught in a movie…Mom went on to say that this love I have for Caleb may not seem natural to her it was also not natural for her to not love her Son or respect the adult choices he makes. She did not want to see me leave over something like that. She went on to say that her and Dad had talked at length and they want to meet Caleb…and soon. I stopped them and asked what the deal was with my room. They looked at each other as if they were unsure as to who was going to answer that…as if I had somehow jumped the script and now they had lost their page.
Dad decided to take the lead and said that he did not want me sneaking around with Caleb. He did not want me in shelters, or other less desirable places. He also did not want Caleb, whom he said was clearly going to be a part of this family for the next however long, to be running around with their son in a veil of secrecy. The room was changed to accommodate Caleb. I could not believe what I was hearing. My parents were inviting my boyfriend to live with us…I was speechless. Dad went on to say that there were going to be ground rules for both Caleb and I to follow.
Mom began to explain and here is what I was told:
Rules:
1) Caleb must continue to attend his addiction course
2) Caleb must learn ASL
3) Caleb and Derry will both have a 1 AM curfew to be observed
4) Two beds means no sleeping together
5) Caleb must find meaningful part time employment within one month of arriving here and must contribute to the household by doing chores
6) Caleb will also begin a High School Equivalency program once he graduates from his Addiction program
I could not believe it. I just couldn’t. Mom said that these rules were not mean to be overbearing or bossy. They were meant to protect me, the integrity of our household and help Caleb do something positive. I was also told that this arrangement would be terminated if any of the rules were broken. There would also be a 3 month probationary period in which we would be expected to demonstrate to them that we could handle this arrangement with maturity.
Dad chimed in and said that he and Mom wanted to meet Caleb no later than Friday and that he could then move in at his discretion assuming he is comfortable with the rules and the arrangement.
Once it was all said and done I couldn’t think of what to say so all I said was thank you. I didn’t know what else I could or should say at the moment. I got up and hugged them both very tight and told them how much I loved them and how hard it had been to leave them like that. How much it hurt to know that I was hurting them and that I really missed them. When my Dad wrapped his arms around me I began to sob like a little kid. I was just so relieved and happy at the same time that it was like a gate broke and my emotions just ran wild.
I asked to be excused from dinner and made my way to my room. I needed to absorb all of this and figure out how to tell all this to Caleb. That is what I am going to do next. Meet Caleb and tell him what is going on. I hope he agrees to all this. I really want him with me and I hope he goes along with it. I know the choice is his but hot food, hot shower, and a real home are all his if he can just go along with the rules. I can’t wait to tell him.
LiveSTRONG!
Monday, April 7, 2008
Homecoming
I got home this morning from another week at Chateau Shelter. As I said I was going to do, I took off for a week to allow my rents and myself to get some perspective on what is going on in my life. Over the last week I have not really posted on the comings and goings at the shelter. This was intentional. I think I needed time to get my head clear and since I needed that time, I thought it best to not post so that I could make sure that I knew what I wanted to say before I went to say it. What I am going to do is just kind of gloss over the last week a little. The focus for me now is on the conversation that is coming this evening with my rents. I call it a conversation but given that I am the kid in the house, I am sure it will be more along the lines of a lecture. I want it to have some back and forth to it though and I do intend to stand my ground and fight back a little. As you know, I am not good at verbal confrontation and so I usually lose but I am going to give it my best tonight. I will save the big shocking incident for the end of the post.
The last week away from home was good. I got that perspective I needed and cleared my head. I got to vent my frustration to some friends and more importantly to Caleb who helped me see things from a different viewpoint. I did a round of Chemo which also although very draining, is giving me a sense of hope which has been missing for some time. I am cautiously optimistic on this one.
I spent most of the week with Caleb, getting close to him and spending that quality time that I so enjoy spending with him. We got to continue our ritual of the nightly hug which has been a good thing for me. We are getting more and more comfortable with each other in that we usually end up cuddling on a couch, holding hands walking somewhere down the street, even exchanging a kiss here and there. There is something magical about holding him that gives me a sense of peace and comfort that I have not found anywhere else. Its comforting to know he is there especially as I find myself navigating some of the biggest challenges of my life. I wont go into the gory details of things but for those of you who are wondering, NO, I have not given up my virginity to him yet LOL.
During the last week I have also decided that I am going to fight as hard as I can to beat my Cancer. I am going to do the Chemo, the drugs, the whatever they tell me to do so that I have a shot at this. I got a really cool note from a good friend who told me he did not want me to go. He is one of a great many people who have been saying things like that and it is giving me the desire to fight this tooth and nail the best that I can. With that being said, I am going to keep it up and even though Chemo sucks, being dead sucks a whole lot more.
So what is the big shocker I mentioned earlier. Well here you go. I got home this morning after everyone had left for work. I went up to my room to find everything had changed. My bed, desk, and dresser were moved to one side of the room. On the other side was another bed, desk, and a mini closet thing that holds clothes. I have no idea what the hell is going on but clearly, the intention is that I am not in this room alone anymore. In fact, I am not even sure I am in this room period! I am not sure if my rents are booting me and renting the room out or what is going on. All I know is that I am horribly confused and I cant find anything out until tonight. I will be sure to let you all know if I am changing addresses but for now, all I can do is wait and see what happens next.
LiveSTRONG!
The last week away from home was good. I got that perspective I needed and cleared my head. I got to vent my frustration to some friends and more importantly to Caleb who helped me see things from a different viewpoint. I did a round of Chemo which also although very draining, is giving me a sense of hope which has been missing for some time. I am cautiously optimistic on this one.
I spent most of the week with Caleb, getting close to him and spending that quality time that I so enjoy spending with him. We got to continue our ritual of the nightly hug which has been a good thing for me. We are getting more and more comfortable with each other in that we usually end up cuddling on a couch, holding hands walking somewhere down the street, even exchanging a kiss here and there. There is something magical about holding him that gives me a sense of peace and comfort that I have not found anywhere else. Its comforting to know he is there especially as I find myself navigating some of the biggest challenges of my life. I wont go into the gory details of things but for those of you who are wondering, NO, I have not given up my virginity to him yet LOL.
During the last week I have also decided that I am going to fight as hard as I can to beat my Cancer. I am going to do the Chemo, the drugs, the whatever they tell me to do so that I have a shot at this. I got a really cool note from a good friend who told me he did not want me to go. He is one of a great many people who have been saying things like that and it is giving me the desire to fight this tooth and nail the best that I can. With that being said, I am going to keep it up and even though Chemo sucks, being dead sucks a whole lot more.
So what is the big shocker I mentioned earlier. Well here you go. I got home this morning after everyone had left for work. I went up to my room to find everything had changed. My bed, desk, and dresser were moved to one side of the room. On the other side was another bed, desk, and a mini closet thing that holds clothes. I have no idea what the hell is going on but clearly, the intention is that I am not in this room alone anymore. In fact, I am not even sure I am in this room period! I am not sure if my rents are booting me and renting the room out or what is going on. All I know is that I am horribly confused and I cant find anything out until tonight. I will be sure to let you all know if I am changing addresses but for now, all I can do is wait and see what happens next.
LiveSTRONG!
Sunday, April 6, 2008
Rap It Up
I thought I would try something different this time and do a blog with an entry that included a special guest blogger. I am really excited to say that Zach from the SIMhl has agreed to be a part of this most recent entry.
I called on Zach because he has extensive knowledge of a brand of music I am just beginning to understand. Zach on the other hand appears to be an authority on the subject and I thought it would be fun to bring him on board to collaborate on this entry.
For those of you who have no idea what I am talking about, I am talking about Rap. A brand of music where sounds produced by instruments and the mouth are meshed with words in a poetic format that has words rhyming in sync with sounds well at the same time, telling a story. For me it was a lot to wrap my head around...until Zach gave me an education. Without further delay, here is what Zach taught me in his own words.
Freestyle Rapping is where you come up with a rap on the spot with no prepared lyrics. The 3 best freestyle rappers are Lil' Flip, Proof, and Snoop Dogg. If you watch 8 Mile, all the battles are freestyle rapping.
Gangsta Rapping was created by N.W.A. and Ice-T. Gangsta rap comprises of beatboxing, vocals, and a drum machine. The main cities involved are L.A., New York, and Oakland.
Southern Rapping became a form of rap once 2Pac and Biggie died. This type of rap uses much more than gangsta rap. Southern rap uses turntables in their music. The main cities involved are Atlanta, Memphis, Houston, and Miami. Some others cities involved are New Orleans and Dallas.
However, the question for me then became, who would make the best selection of Rappers to listen to from each category or city. Zach did not fail me, he gave me this list to work with and if your looking to get a better understanding of each style of Rap this list may be helpful to you.
New York:
Notorious B.I.G. (Biggie)
Jay-Z
Diddy
Nas
50 Cent
Busta Rhymes
Detroit:
Eminem
D12 (Proof, Bizarre, Swift, Kuniva, Kon Artis, Eminem)
Obie Trice
Fat Killaz
Trick-Trick
Atlanta:
Ludacris
T.I.
Young Jeezy
Lil' Jon
Outkast (Big Boi, Andre 3000)
Yung Joc
Houston:
Chamillionaire
Lil' Flip
Paul Wall
Mike Jones
U.G.K (Pimp C, Bun B)
Memphis:
Three 6 Mafia (Juicy J, DJ Paul)
Lil' Wyte
Chrome
New Orleans:
Birdman
Lil' Wayne
Miami:
Rick Ross
Pitbull
DJ Khaled
Los Angeles:
2Pac
Snoop Dogg
Dr. Dre
Xzibit
Kurupt
Nate Dogg
N.W.A.
Warren G
Ice Cube
Ice-T
The Game
B-Real
(I know, there are a lot from L.A.)
finally,
Oakland:
Too $hort
E-40
I have had a chance to listen to a sample of these artists but I have to say, on the advice of my good buddy, I listened to a group called, "Cool Kids" and I like them a lot.
I know there a lot of groups and artists out there. I am hoping to experience as many of them as I can as I am hoping to experience as many different styles of music as I can.
Without the help of people like Zach, I would miss out on stuff like this. The way these artists weave words, sounds, and a storyline in one short song is amazing. I was impressed.
Sooooo, do you think you know an artist or type of music I should listen to? Lemme know, I am all ears (no pun intended)
Tomorrow I make my return home for the first time in a week, I will be devoting tomorrows entry to that subject...lets just hope its not heavy weather.
Special thanks to Zach for taking the time out to educate all of us on this style of music...I hope everyone got as much out of it as I did.
LiveSTRONG!
I called on Zach because he has extensive knowledge of a brand of music I am just beginning to understand. Zach on the other hand appears to be an authority on the subject and I thought it would be fun to bring him on board to collaborate on this entry.
For those of you who have no idea what I am talking about, I am talking about Rap. A brand of music where sounds produced by instruments and the mouth are meshed with words in a poetic format that has words rhyming in sync with sounds well at the same time, telling a story. For me it was a lot to wrap my head around...until Zach gave me an education. Without further delay, here is what Zach taught me in his own words.
Freestyle Rapping is where you come up with a rap on the spot with no prepared lyrics. The 3 best freestyle rappers are Lil' Flip, Proof, and Snoop Dogg. If you watch 8 Mile, all the battles are freestyle rapping.
Gangsta Rapping was created by N.W.A. and Ice-T. Gangsta rap comprises of beatboxing, vocals, and a drum machine. The main cities involved are L.A., New York, and Oakland.
Southern Rapping became a form of rap once 2Pac and Biggie died. This type of rap uses much more than gangsta rap. Southern rap uses turntables in their music. The main cities involved are Atlanta, Memphis, Houston, and Miami. Some others cities involved are New Orleans and Dallas.
However, the question for me then became, who would make the best selection of Rappers to listen to from each category or city. Zach did not fail me, he gave me this list to work with and if your looking to get a better understanding of each style of Rap this list may be helpful to you.
New York:
Notorious B.I.G. (Biggie)
Jay-Z
Diddy
Nas
50 Cent
Busta Rhymes
Detroit:
Eminem
D12 (Proof, Bizarre, Swift, Kuniva, Kon Artis, Eminem)
Obie Trice
Fat Killaz
Trick-Trick
Atlanta:
Ludacris
T.I.
Young Jeezy
Lil' Jon
Outkast (Big Boi, Andre 3000)
Yung Joc
Houston:
Chamillionaire
Lil' Flip
Paul Wall
Mike Jones
U.G.K (Pimp C, Bun B)
Memphis:
Three 6 Mafia (Juicy J, DJ Paul)
Lil' Wyte
Chrome
New Orleans:
Birdman
Lil' Wayne
Miami:
Rick Ross
Pitbull
DJ Khaled
Los Angeles:
2Pac
Snoop Dogg
Dr. Dre
Xzibit
Kurupt
Nate Dogg
N.W.A.
Warren G
Ice Cube
Ice-T
The Game
B-Real
(I know, there are a lot from L.A.)
finally,
Oakland:
Too $hort
E-40
I have had a chance to listen to a sample of these artists but I have to say, on the advice of my good buddy, I listened to a group called, "Cool Kids" and I like them a lot.
I know there a lot of groups and artists out there. I am hoping to experience as many of them as I can as I am hoping to experience as many different styles of music as I can.
Without the help of people like Zach, I would miss out on stuff like this. The way these artists weave words, sounds, and a storyline in one short song is amazing. I was impressed.
Sooooo, do you think you know an artist or type of music I should listen to? Lemme know, I am all ears (no pun intended)
Tomorrow I make my return home for the first time in a week, I will be devoting tomorrows entry to that subject...lets just hope its not heavy weather.
Special thanks to Zach for taking the time out to educate all of us on this style of music...I hope everyone got as much out of it as I did.
LiveSTRONG!
Saturday, April 5, 2008
Leading With My Heart
People ask me what kind of person I am. I struggle with that at times. Just like I always struggled with the question, "Tell me about yourself". As much as I am an open person I always find it hard to talk about myself verbally. Even when I was doing it with ASL, I always struggled with it. I have always been much better at writing about myself.
Maybe that is why I find it so easy to write this blog and be so very open. So to tell you some more. I am a very sensitive person, always have been. I find I usually pick up on peoples emotions pretty easy too. I really do put up a big tough guy facade but when you peel it all back you will find that I am probably very insecure and not at all the tough guy my exterior shows me to be. I think I hide behind my build a lot. I work out a lot and keep myself in shape because it helps cover up my shortcomings with my insecurities. It would probably not take too much to beat me up in a verbal confrontation, and I say that because I really hate confrontation. I am not much of a fighter. I can hold my own physically but verbally, I am probably pretty weak. I also tend to be a little self-destructive. I have a wicked tendency to be very hard on myself and that really just compounds things to the point where I keep beating on myself in my mind and then it starts a vicious cycle.
I think this is why I am struggling so badly with what my rents are doing to me. I am a social person by nature...if you really want to hurt me, stop talking to me and thats what they have done. I was listening to the radio and this song by a guy named Bruce Guthro came on...it was almost fate I think as I went and looked up the lyrics I could not help but feel it was written for me though I know it wasn't.
I am going to post them here in a sec so you can see what I mean. I am two days away from Monday and a return home to see if things have changed and yet like the song says, I am falling into a world I cant describe.
I hope things work out when I get home because if they don't I am going to have to leave and that will be the single hardest thing I have ever done.
So to get back to what I wanted to share here, here are the lyrics, I can't help but feel they are fitting as I get ready to face my parents again
Bruce Guthro -- Falling
I will be in town tomorrow, would you meet me at the station
there's something I would like to talk to you about
it's just this thing that has been on my mind forever
and I was hoping we could find a way to work it out
By the way, this is Martin, just in case you have forgotten
what I sound like, ya it's been a long, long time
they say that absence helps the heart grow fonder
Ya well anyway, I'd like to see you, if you don't mind
Look I'm sorry if I hurt you, and I'm sorry that I left,
and as of late seems I'm sorry all the time....
Wishing wells and shooting stars have been my friends
and I have come to realize that all the fault is mine.
And I am falling, into a world that I can't describe
And I am calling, 'cause I'd like to say goodbye
Hey I will be in town tomorrow, could you meet me at the station
if it's just to see your face as the train pulls through
I just wanna see you laugh or cry or shake your head at me
I just wanna see what twenty years has done to you
See I have nothing left to loose, no time left to choose,
if I should let this deadly silence carry on,
twenty years or twenty days is far too long,
for two people who once held each other in their arms,
And I am falling, into a world that i can't describe
and I am calling, 'cause I'd like to say goodbye
Will you take me by the hand say you'll understand
or would you wanna drive me down on to my knees
these are the chances I must take, and I know i must not forsake
your right to do and feel just what you please
But I don't have alot of time, to write the wrongs I left behind
to undo all the damage I have done
So I'm calling you to ask for your forgiveness.
Is that so much to ask ............ of your son?
Ya,I will be in town tomorrow, could you meet me at the station
there's something I would like to talk to you about....
LiveSTRONG!
Maybe that is why I find it so easy to write this blog and be so very open. So to tell you some more. I am a very sensitive person, always have been. I find I usually pick up on peoples emotions pretty easy too. I really do put up a big tough guy facade but when you peel it all back you will find that I am probably very insecure and not at all the tough guy my exterior shows me to be. I think I hide behind my build a lot. I work out a lot and keep myself in shape because it helps cover up my shortcomings with my insecurities. It would probably not take too much to beat me up in a verbal confrontation, and I say that because I really hate confrontation. I am not much of a fighter. I can hold my own physically but verbally, I am probably pretty weak. I also tend to be a little self-destructive. I have a wicked tendency to be very hard on myself and that really just compounds things to the point where I keep beating on myself in my mind and then it starts a vicious cycle.
I think this is why I am struggling so badly with what my rents are doing to me. I am a social person by nature...if you really want to hurt me, stop talking to me and thats what they have done. I was listening to the radio and this song by a guy named Bruce Guthro came on...it was almost fate I think as I went and looked up the lyrics I could not help but feel it was written for me though I know it wasn't.
I am going to post them here in a sec so you can see what I mean. I am two days away from Monday and a return home to see if things have changed and yet like the song says, I am falling into a world I cant describe.
I hope things work out when I get home because if they don't I am going to have to leave and that will be the single hardest thing I have ever done.
So to get back to what I wanted to share here, here are the lyrics, I can't help but feel they are fitting as I get ready to face my parents again
Bruce Guthro -- Falling
I will be in town tomorrow, would you meet me at the station
there's something I would like to talk to you about
it's just this thing that has been on my mind forever
and I was hoping we could find a way to work it out
By the way, this is Martin, just in case you have forgotten
what I sound like, ya it's been a long, long time
they say that absence helps the heart grow fonder
Ya well anyway, I'd like to see you, if you don't mind
Look I'm sorry if I hurt you, and I'm sorry that I left,
and as of late seems I'm sorry all the time....
Wishing wells and shooting stars have been my friends
and I have come to realize that all the fault is mine.
And I am falling, into a world that I can't describe
And I am calling, 'cause I'd like to say goodbye
Hey I will be in town tomorrow, could you meet me at the station
if it's just to see your face as the train pulls through
I just wanna see you laugh or cry or shake your head at me
I just wanna see what twenty years has done to you
See I have nothing left to loose, no time left to choose,
if I should let this deadly silence carry on,
twenty years or twenty days is far too long,
for two people who once held each other in their arms,
And I am falling, into a world that i can't describe
and I am calling, 'cause I'd like to say goodbye
Will you take me by the hand say you'll understand
or would you wanna drive me down on to my knees
these are the chances I must take, and I know i must not forsake
your right to do and feel just what you please
But I don't have alot of time, to write the wrongs I left behind
to undo all the damage I have done
So I'm calling you to ask for your forgiveness.
Is that so much to ask ............ of your son?
Ya,I will be in town tomorrow, could you meet me at the station
there's something I would like to talk to you about....
LiveSTRONG!
Friday, April 4, 2008
Welcome To My Soul
I got out of bed this morning and I took my usual walk to the men’s room to get ready for the morning and the rest of the day. It’s a routine I have been following both weeks I have been here. I stopped in front of the mirror as I usually do and just stared at the reflection. I have spent a lot of time reading people through their eyes but I don’t think I have ever spent that time reading my own. I thought what I would do today is just take a step back and open up a little more about me, who I am, and how I got to where I am. I don’t like to be guarded about my background, I enjoy being open and honest, even when that honesty comes at my own expense.
All my life I think I have been a bit of an oddball. When you’re deaf, you’re immediately not like the other kids. I think as a result of that you quickly learn to become protective of yourself. I have learned that you will always have friends in life if you love yourself first. Growing up as a kid, as I have posted before, I was treated no differently than any other kid. I think it amazes people when they realize that my parents were no different with me than they would have been with a hearing able kid. I guess the big thing is that I never got to hear my parents yell at me because obviously, they couldn’t do that. However, when you see someone signing some very strong things at you in a very aggressive manner, it is just like being yelled at. ASL is all about visual reading. A lot can be expressed by the facial expressions of the person doing the signing. From those expressions you usually get a great idea around the tone of their conversation. That being said, I was a pretty good kid. I didn’t get into much trouble. I tried really hard to please my parents and not be a bother to them. As you know, I got my share of trouble and as a result, I also got my share of time over a knee. People have asked me if I lost respect for my parent’s cuz they chose to physically discipline. I have always said no to that. I never felt they were bad people for that just as I don’t think they are bad people for what is happening now. They did what they thought was best for me. Now, I sure as hell didn’t like it when it was happening, but I also tried to take it like a champ cuz deep down I knew I was wrong. I was not abused mind you, I mean, they never hit me to the point that I was needing medical attention. There were always limits to how far they would go. The thing I hated more than the actual spanking itself was having to stand in a corner after for a timeout. I don’t know about you, but I don’t think any kid thinks about what they did when they stand there…if there anything like me, they were thinking about how quickly they could get back to having fun again. I know your probably laughing at me thinking about me standing in some corner with ass on fire LOL. I can’t blame you, in hindsight it seems rather funny to me too.
As I got older, my parents started to treat me with a little more respect. My relationships with my friends also evolved. I was probably in my tween years 10-12 when things started getting different with my friends. I think it was that awkward period where you no longer think girls are bad for your health. C’mon boys, you know what I am talking about here. I was different though. I preferred to hang out with the older kids. I never have been too good at associating with people my own age. I don’t know why that is, it just is. I managed though. That’s not to say that I didn’t hang out with the kids my age, I did, and it was fun but I always seemed to like the older crowd more.
As I got into my early teen years all hell broke loose on me. Puberty was not kind to me in the slightest. I got all un-coordinated, I became a total train wreck of a klutz, and it was all I could do to maintain any sort of dignity LOL. At the same time though, I discovered I had some really cool talents. I discovered that I could write, and write well. I write poetry more than anything else. I got good at it and then started writing short stories. I discovered that what my body lacked in hearing, it made up for in creativity. I began to use writing as a creative outlet for all my early teenage awkwardness. It was exactly what I needed at just the right time. I have never really publicly shared much of my writing but I probably will in this blog at some point in time.
I have also always been one who is slow to anger and quick to forgive. I think I get that from my Dad though right about now he is not really showing me that quality like he could be. I try to live my life to the fullest and make other people laugh and smile. I like knowing that I have somehow done something for someone and made a difference. I know how corny that must sound but that’s me. I said I was odd. Is it really odd to enjoy doing things like that for other people…to want to give someone something they may not have. I don’t mean it has to be material, sometimes it’s just a case of being willing to listen. I have always been ridiculed a little for being that way. Some people also think I am naive for being this way. Maybe I am. Some people think I am crazy for being so open about who I am and what makes me tick but I kind of like being open. There are no skeletons in my closet so why not be open. I guess some people will disagree but hey, I have nothing to hide and when I die, I want everyone to know the real me all my working and broken parts, all my ups, downs, and everything in between.
Its funny, I am 19 now and although my early teen years were only a few years ago I feel as though I have matured a lot since then. I think having the implant done and living with the social implications of that decision and then being diagnosed with brain cancer has made me grow up fast. Its funny, my mind feels like its years ahead of itself and yet my body is very much that of a child’s…if you don’t believe me, count the three…yes three…hairs on my chest HAHA! I still, as I have said before, do stupid teenage boy things that I should probably know better but I just can’t help myself.
Now I find myself in my first serious relationship. One I feel very strongly about and once again I find myself having to use maturity beyond my years. I find myself being shunned by some in the deaf community for going CI, I am being shunned by my parents for being Bisexual, and I am battling a Cancer that will likely take my life long before I get to live it fully. You know what though…I wouldn’t have it any other way. I firmly believe that all of this is happening to me because I am meant to do something special with this life. I am not entirely sure what it is yet, but I believe that writing about my experiences and who I am in this blog was one of those things I was meant to do. I am not sad, or mad, or anything. I am at peace, I have said that all along and I have peace in knowing that I am meant for bigger things. I believe that wholeheartedly, I have to.
Caleb walks into the bathroom as I close my eyes and block out the view to my soul. I feel his warm hands wrapped around my bare chest and I feel good inside. He whispers in my ear that breakfast is waiting and I tell him I will be coming soon.
This post is getting long but I wanted to give you a peek inside my soul. It’s not much, but I hope you walk away from this post with a better understanding of who I really am and what I believe I am meant to do. I will do more of these posts if you like them…if you find them interesting. I don’t want to come across as self indulgent. I just want you to know me and if you do, let me know so I know to post one of these now and then.
LiveSTRONG!
All my life I think I have been a bit of an oddball. When you’re deaf, you’re immediately not like the other kids. I think as a result of that you quickly learn to become protective of yourself. I have learned that you will always have friends in life if you love yourself first. Growing up as a kid, as I have posted before, I was treated no differently than any other kid. I think it amazes people when they realize that my parents were no different with me than they would have been with a hearing able kid. I guess the big thing is that I never got to hear my parents yell at me because obviously, they couldn’t do that. However, when you see someone signing some very strong things at you in a very aggressive manner, it is just like being yelled at. ASL is all about visual reading. A lot can be expressed by the facial expressions of the person doing the signing. From those expressions you usually get a great idea around the tone of their conversation. That being said, I was a pretty good kid. I didn’t get into much trouble. I tried really hard to please my parents and not be a bother to them. As you know, I got my share of trouble and as a result, I also got my share of time over a knee. People have asked me if I lost respect for my parent’s cuz they chose to physically discipline. I have always said no to that. I never felt they were bad people for that just as I don’t think they are bad people for what is happening now. They did what they thought was best for me. Now, I sure as hell didn’t like it when it was happening, but I also tried to take it like a champ cuz deep down I knew I was wrong. I was not abused mind you, I mean, they never hit me to the point that I was needing medical attention. There were always limits to how far they would go. The thing I hated more than the actual spanking itself was having to stand in a corner after for a timeout. I don’t know about you, but I don’t think any kid thinks about what they did when they stand there…if there anything like me, they were thinking about how quickly they could get back to having fun again. I know your probably laughing at me thinking about me standing in some corner with ass on fire LOL. I can’t blame you, in hindsight it seems rather funny to me too.
As I got older, my parents started to treat me with a little more respect. My relationships with my friends also evolved. I was probably in my tween years 10-12 when things started getting different with my friends. I think it was that awkward period where you no longer think girls are bad for your health. C’mon boys, you know what I am talking about here. I was different though. I preferred to hang out with the older kids. I never have been too good at associating with people my own age. I don’t know why that is, it just is. I managed though. That’s not to say that I didn’t hang out with the kids my age, I did, and it was fun but I always seemed to like the older crowd more.
As I got into my early teen years all hell broke loose on me. Puberty was not kind to me in the slightest. I got all un-coordinated, I became a total train wreck of a klutz, and it was all I could do to maintain any sort of dignity LOL. At the same time though, I discovered I had some really cool talents. I discovered that I could write, and write well. I write poetry more than anything else. I got good at it and then started writing short stories. I discovered that what my body lacked in hearing, it made up for in creativity. I began to use writing as a creative outlet for all my early teenage awkwardness. It was exactly what I needed at just the right time. I have never really publicly shared much of my writing but I probably will in this blog at some point in time.
I have also always been one who is slow to anger and quick to forgive. I think I get that from my Dad though right about now he is not really showing me that quality like he could be. I try to live my life to the fullest and make other people laugh and smile. I like knowing that I have somehow done something for someone and made a difference. I know how corny that must sound but that’s me. I said I was odd. Is it really odd to enjoy doing things like that for other people…to want to give someone something they may not have. I don’t mean it has to be material, sometimes it’s just a case of being willing to listen. I have always been ridiculed a little for being that way. Some people also think I am naive for being this way. Maybe I am. Some people think I am crazy for being so open about who I am and what makes me tick but I kind of like being open. There are no skeletons in my closet so why not be open. I guess some people will disagree but hey, I have nothing to hide and when I die, I want everyone to know the real me all my working and broken parts, all my ups, downs, and everything in between.
Its funny, I am 19 now and although my early teen years were only a few years ago I feel as though I have matured a lot since then. I think having the implant done and living with the social implications of that decision and then being diagnosed with brain cancer has made me grow up fast. Its funny, my mind feels like its years ahead of itself and yet my body is very much that of a child’s…if you don’t believe me, count the three…yes three…hairs on my chest HAHA! I still, as I have said before, do stupid teenage boy things that I should probably know better but I just can’t help myself.
Now I find myself in my first serious relationship. One I feel very strongly about and once again I find myself having to use maturity beyond my years. I find myself being shunned by some in the deaf community for going CI, I am being shunned by my parents for being Bisexual, and I am battling a Cancer that will likely take my life long before I get to live it fully. You know what though…I wouldn’t have it any other way. I firmly believe that all of this is happening to me because I am meant to do something special with this life. I am not entirely sure what it is yet, but I believe that writing about my experiences and who I am in this blog was one of those things I was meant to do. I am not sad, or mad, or anything. I am at peace, I have said that all along and I have peace in knowing that I am meant for bigger things. I believe that wholeheartedly, I have to.
Caleb walks into the bathroom as I close my eyes and block out the view to my soul. I feel his warm hands wrapped around my bare chest and I feel good inside. He whispers in my ear that breakfast is waiting and I tell him I will be coming soon.
This post is getting long but I wanted to give you a peek inside my soul. It’s not much, but I hope you walk away from this post with a better understanding of who I really am and what I believe I am meant to do. I will do more of these posts if you like them…if you find them interesting. I don’t want to come across as self indulgent. I just want you to know me and if you do, let me know so I know to post one of these now and then.
LiveSTRONG!
Thursday, April 3, 2008
A Day In The Life Of A Chemo Patient
9:00 AM – Ariived at the Cancer Clinic, check in with reception and fill out the necessary forms to have them shoot me up with drugs.
10:00 AM – I make my way to the treatment room. A very nice nurse tells me all about the procedure as she begins to prep my IV for me. She is quick about it and before too long, she has the needle in me and the bags are hung up on the IV pole for me. She tells me this will take about 2 hrs to 2.5 hrs to complete. I know the drill and tell her as much with a polite smile.
11:00 AM – I am half way through. So far so good. Sometimes you can feel a little sick halfway through the treatment which makes things a little more complicated. Aside from a slight stinging sensation at the point of injection, I am fine. More bored than anything else as I flip through a magazine. I wonder to myself what my rents are up to and how Caleb is doing.
12:10 PM – The nice nurse returns and unhooks me. My treatment is complete and I am free to sit and wait until they can find me a room for the night. I have opted to stay on the advice of my Oncologist who is apparently using a different Chemo cocktail for me this time. He wants to make sure I don’t have any outrageous side effects. Knowing the drill, I opt to drink small amounts of water and skip a heavy lunch in favour of some soup, crackers, and jello. My hope is that it tastes just as good coming back up as it did going down. I have learned that eating heavy well doing a treatment is a recipe for projectile vomiting. One learns quickly to drink water as much as one can and skip the apple pie for dessert.
3:20 PM – I am assigned to a room with another patient. He is nowhere near my age and he is asleep. This means two things, I am going to be bored out of my skull and wont have anyone to talk to for the most part. I am thankful for the television even though daytime TV is not nearly as good as primetime. I glance at my watch and secretly wonder if Fatcat laid the smack down on Scooter in game 7 in or if it was the other way around. The results will impact a deal I have on the table in terms of whether or not I have a trade offer waiting for me or not.
5:00 PM – Its dinner time. They come around with the food trays. I am not feeling lucky so I go with the soup, crackers and Jello again. They give me the green jello and I immediately send it back asking for red. The thought of eating anything green makes my already nauseas stomach churn a little harder. The broth and crackers are nice, I again pray they stay put and tune into the 5PM news.
5:15 PM – a knock at the door makes me look up. Standing there, with a big smile is Caleb. I am completely shocked. I told him I was going in but never suspected he would bother to come. I click off the news and he grabs a seat on the side of my bed. I am overwhelmed…he really cares and suddenly, I am feeling a lot better…emotional, but better.
7:10 PM – Caleb is still with me but unfortunately my dinner is not. The nausea has started and much to my surprise, Caleb sticks with me the whole way, rubbing my back and reassuring me that I am going to be just fine. I am stunned…he could easily bail or have no part of this and yet he chooses to stand by me. When I make my return to the bed he tells me he plans on standing beside me the whole way because he knows he was the one who begged me to go back through this. I am happy, I think I may have truly found the one. It takes a special breed of person to be able to sit in a room with someone else when they are puking their brains out.
8:30 PM, 10:04 PM, 11:28 PM – More trips to the bathroom where dinner and I get reacquainted with each other. At this point however its more dry heaves than anything else. Caleb, tired but with me, continues to keep a watch over me. The nursing staff tell him he needs to leave to which he tells them that he is not going anywhere unless they want to remove him. I ask them to let him stay and they reluctantly allow it.
7:00 AM – I have no idea what time I fell asleep but I wake up to find Caleb half in and half out of a chair. He looks so cute sleeping in that chair and I feel bad for waking him up. He stretches, lifts himself up and gives me that big smile.
8:00 AM – breakfast arrives, I eat the eggs and the dry toast, drink the orange juice but skip the coffee. The Oncologist releases me after we book a return date for next week.
I have survived round 1 of my new Chemo regiment and I am making my way back to the shelter. Caleb is on his way to his class for recovering addicts. I will spend the most of today trying to recuperate and helping in the kitchen as much as I can. I still feel like a little bag of shit but I have been there and done that before so its nothing new.
Next week will be much of the same and this will continue for several weeks, maybe even months. In the end though, I have Caleb, I have hope, and I have my Blog. I am reminded of something I was once told, “We make a living by what we get, but we make a life by what we give”
LiveSTRONG!
10:00 AM – I make my way to the treatment room. A very nice nurse tells me all about the procedure as she begins to prep my IV for me. She is quick about it and before too long, she has the needle in me and the bags are hung up on the IV pole for me. She tells me this will take about 2 hrs to 2.5 hrs to complete. I know the drill and tell her as much with a polite smile.
11:00 AM – I am half way through. So far so good. Sometimes you can feel a little sick halfway through the treatment which makes things a little more complicated. Aside from a slight stinging sensation at the point of injection, I am fine. More bored than anything else as I flip through a magazine. I wonder to myself what my rents are up to and how Caleb is doing.
12:10 PM – The nice nurse returns and unhooks me. My treatment is complete and I am free to sit and wait until they can find me a room for the night. I have opted to stay on the advice of my Oncologist who is apparently using a different Chemo cocktail for me this time. He wants to make sure I don’t have any outrageous side effects. Knowing the drill, I opt to drink small amounts of water and skip a heavy lunch in favour of some soup, crackers, and jello. My hope is that it tastes just as good coming back up as it did going down. I have learned that eating heavy well doing a treatment is a recipe for projectile vomiting. One learns quickly to drink water as much as one can and skip the apple pie for dessert.
3:20 PM – I am assigned to a room with another patient. He is nowhere near my age and he is asleep. This means two things, I am going to be bored out of my skull and wont have anyone to talk to for the most part. I am thankful for the television even though daytime TV is not nearly as good as primetime. I glance at my watch and secretly wonder if Fatcat laid the smack down on Scooter in game 7 in or if it was the other way around. The results will impact a deal I have on the table in terms of whether or not I have a trade offer waiting for me or not.
5:00 PM – Its dinner time. They come around with the food trays. I am not feeling lucky so I go with the soup, crackers and Jello again. They give me the green jello and I immediately send it back asking for red. The thought of eating anything green makes my already nauseas stomach churn a little harder. The broth and crackers are nice, I again pray they stay put and tune into the 5PM news.
5:15 PM – a knock at the door makes me look up. Standing there, with a big smile is Caleb. I am completely shocked. I told him I was going in but never suspected he would bother to come. I click off the news and he grabs a seat on the side of my bed. I am overwhelmed…he really cares and suddenly, I am feeling a lot better…emotional, but better.
7:10 PM – Caleb is still with me but unfortunately my dinner is not. The nausea has started and much to my surprise, Caleb sticks with me the whole way, rubbing my back and reassuring me that I am going to be just fine. I am stunned…he could easily bail or have no part of this and yet he chooses to stand by me. When I make my return to the bed he tells me he plans on standing beside me the whole way because he knows he was the one who begged me to go back through this. I am happy, I think I may have truly found the one. It takes a special breed of person to be able to sit in a room with someone else when they are puking their brains out.
8:30 PM, 10:04 PM, 11:28 PM – More trips to the bathroom where dinner and I get reacquainted with each other. At this point however its more dry heaves than anything else. Caleb, tired but with me, continues to keep a watch over me. The nursing staff tell him he needs to leave to which he tells them that he is not going anywhere unless they want to remove him. I ask them to let him stay and they reluctantly allow it.
7:00 AM – I have no idea what time I fell asleep but I wake up to find Caleb half in and half out of a chair. He looks so cute sleeping in that chair and I feel bad for waking him up. He stretches, lifts himself up and gives me that big smile.
8:00 AM – breakfast arrives, I eat the eggs and the dry toast, drink the orange juice but skip the coffee. The Oncologist releases me after we book a return date for next week.
I have survived round 1 of my new Chemo regiment and I am making my way back to the shelter. Caleb is on his way to his class for recovering addicts. I will spend the most of today trying to recuperate and helping in the kitchen as much as I can. I still feel like a little bag of shit but I have been there and done that before so its nothing new.
Next week will be much of the same and this will continue for several weeks, maybe even months. In the end though, I have Caleb, I have hope, and I have my Blog. I am reminded of something I was once told, “We make a living by what we get, but we make a life by what we give”
LiveSTRONG!
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