I got my new chair today. It is pretty cool; I mean as much as a symbol of disability can be.
It is quite comfy and has some features that help me where I need it. Of course, they make me feel more disabled. I got a lateral support because I lean left. The controller also has all sort of add-ons available, so when I need a tile program or something I don't need a new chair. And there is a headrest that I should use when I travel but can't put it on and take it off myself so it might gather a little dust.
There is one other thing about the chair that stands out: It is cherry-apple red.
A few years ago, a friend told me I was "so incredibly alive and vibrant." I don't think I am really, but perhaps some tiny bit of my brain and subconscious is. It was that part that ordered the showiest color I could find. It is that part of me that also likes having Claren around not because she helps me but because she makes me stand out.
My worry is not that I'm too sexy for my chair; it is that maybe it is too sexy for me.
Sunday, March 9, 2008
Make me over, Ty
I applied to Extreme Makeover Home Edition last week.
It was very last minute. One of my sisters-in-law sent me an application that said they were looking for Virginia people. I kind of put it off and then finished it the day it was due.
We'll build a house, regardless, of course, but how cool would that be: to get a home built on TV. Here is the little story I wrote to show we are deserving. I wrote it with some help from my newspaper sister and some last minute editing and fact-checking from Mom. It is a little schmaltzy but not untrue at all, and it is from my heart.
When I was growing up in Falls Church, Va., I quickly got used to people saying: "Oh, you're Simone's grandson" or "Oh, I know your family."
Gram came to Virginia at 23 and made her home here. She married a man who built her a home in Falls Church , and she began to make the community her own.
She more than succeeded. I lived next to her for much of my life, and I never saw her turn away someone in need. Grandchildren, their friends, visiting students and many others took up residence in her back room when they needed a place to stay. One of my favorite stories about her "boarders" is about Mark. The police showed up at Gram's house to arrest Mark for something stupid he had done. Gram didn't hide him or anything like that; she just wanted to know if Mark could finish his dinner before the police took him off. To Gram's chagrin. Mark did not get to finish his hamburger pie.
When she died 16 months ago at 94, the number of people who gathered or wrote to say goodbye was incredible. Everyone, it seemed, had a story to tell about Gram's kindness and loving influence on them.
Even in death, Gram is a help to me. It used to drive me crazy that when she was alive, she used to say how alike we were in our abilities. Isn't it awful, she would say, that we have to rely on your mother to drive us anywhere. I could never point out to her that she was a 90-year-old woman who had lived a wonderful life and I am a thirty-something in a wheelchair with a ravaging genetic disease. Now, though, I can talk to someone who understands what I deal with.
And she is helping bring me back to the community I grew up in and giving me strength and comfort at the same time.
Gram loved everyone with a great heart, even my sister and me, the two youngest in our specific family, who probably got along the least well as young children and young teens. Then in college, we found out more about ourselves and about each other. Now we are the closest of all of the family in some ways.
We are about to become closer.
My brother T and I have a genetic condition called Freidriech's Ataxia. It's a progressive neuro-muscular condition that has landed us both in wheelchairs and affects very waking moment of our lives. For me, having a disability means having to struggle almost every second, whether it is to holding my head steady or swallowing water. T is married and lives with his wife in a fully accessible condo. I live in a condo that is kind of accessible about 30 minutes away from my parents, who do more than I can say to make my life flow as easily as possible. But it is far from easy. I take public transportation to my job, but it is not convenient or even safe sometimes so Mom or Dad drive out to drive me in some days and drive me home most days. Then there is the time I am alone. Every single thing I do requires many times the effort it would require a healthy person. I fall regularly and hurt myself. Alone.
Everything is about to get easier, or at least easier to deal with. My sister and her family plan to build a home on property we inherited from Gram, a home with an accessible apartment for me and a yard for my service dog My parents will be next door. I will again become "Simone's grandson," or maybe the torch has been passed and I will become known as "Joe D's uncle."
I know it won't solve all my problems, but it will be huge. I will have family and love seeping into me everywhere I turn. And I'll always have Gram.
It was very last minute. One of my sisters-in-law sent me an application that said they were looking for Virginia people. I kind of put it off and then finished it the day it was due.
We'll build a house, regardless, of course, but how cool would that be: to get a home built on TV. Here is the little story I wrote to show we are deserving. I wrote it with some help from my newspaper sister and some last minute editing and fact-checking from Mom. It is a little schmaltzy but not untrue at all, and it is from my heart.
When I was growing up in Falls Church, Va., I quickly got used to people saying: "Oh, you're Simone's grandson" or "Oh, I know your family."
Gram came to Virginia at 23 and made her home here. She married a man who built her a home in Falls Church , and she began to make the community her own.
She more than succeeded. I lived next to her for much of my life, and I never saw her turn away someone in need. Grandchildren, their friends, visiting students and many others took up residence in her back room when they needed a place to stay. One of my favorite stories about her "boarders" is about Mark. The police showed up at Gram's house to arrest Mark for something stupid he had done. Gram didn't hide him or anything like that; she just wanted to know if Mark could finish his dinner before the police took him off. To Gram's chagrin. Mark did not get to finish his hamburger pie.
When she died 16 months ago at 94, the number of people who gathered or wrote to say goodbye was incredible. Everyone, it seemed, had a story to tell about Gram's kindness and loving influence on them.
Even in death, Gram is a help to me. It used to drive me crazy that when she was alive, she used to say how alike we were in our abilities. Isn't it awful, she would say, that we have to rely on your mother to drive us anywhere. I could never point out to her that she was a 90-year-old woman who had lived a wonderful life and I am a thirty-something in a wheelchair with a ravaging genetic disease. Now, though, I can talk to someone who understands what I deal with.
And she is helping bring me back to the community I grew up in and giving me strength and comfort at the same time.
Gram loved everyone with a great heart, even my sister and me, the two youngest in our specific family, who probably got along the least well as young children and young teens. Then in college, we found out more about ourselves and about each other. Now we are the closest of all of the family in some ways.
We are about to become closer.
My brother T and I have a genetic condition called Freidriech's Ataxia. It's a progressive neuro-muscular condition that has landed us both in wheelchairs and affects very waking moment of our lives. For me, having a disability means having to struggle almost every second, whether it is to holding my head steady or swallowing water. T is married and lives with his wife in a fully accessible condo. I live in a condo that is kind of accessible about 30 minutes away from my parents, who do more than I can say to make my life flow as easily as possible. But it is far from easy. I take public transportation to my job, but it is not convenient or even safe sometimes so Mom or Dad drive out to drive me in some days and drive me home most days. Then there is the time I am alone. Every single thing I do requires many times the effort it would require a healthy person. I fall regularly and hurt myself. Alone.
Everything is about to get easier, or at least easier to deal with. My sister and her family plan to build a home on property we inherited from Gram, a home with an accessible apartment for me and a yard for my service dog My parents will be next door. I will again become "Simone's grandson," or maybe the torch has been passed and I will become known as "Joe D's uncle."
I know it won't solve all my problems, but it will be huge. I will have family and love seeping into me everywhere I turn. And I'll always have Gram.
Saturday, March 8, 2008
I am feeling very sleepy
I woke up today at the same time I do every day I don't work: 6:30. That is one hour and two minutes later than I get up on work days. For some reason my work-day alarm goes off at 5:28, and I never change it.
After I took Claren out this morning I had breakfast and read the newspaper. Then I went back to bed to read the rest of the paper. I made it through the style section, where I learned that smart people are often montrously stupid. Then I got really tired and fell asleep.
I woke up again about noon and lay in bed dozing for close to another hour. When I finally did get up there was a phone message from Mom. There is a phone sitting on my bed but I sleep right through it all the time. I called her about 1, just in time apparently. My little sister told me that Mom told her she was going to drive out to my house if she had not heard from me by 1.
After calling Mom and having lunch, I took Claren for a walk. Then about 3:30, I fell asleep for another hour.
I hate sleeping so much; it is so wasteful and takes time away from important things like reading comics. I can't help it, though, and now I am going to bed before I fall asleep. After all, I have spent almost 12 hours out off my bed.
After I took Claren out this morning I had breakfast and read the newspaper. Then I went back to bed to read the rest of the paper. I made it through the style section, where I learned that smart people are often montrously stupid. Then I got really tired and fell asleep.
I woke up again about noon and lay in bed dozing for close to another hour. When I finally did get up there was a phone message from Mom. There is a phone sitting on my bed but I sleep right through it all the time. I called her about 1, just in time apparently. My little sister told me that Mom told her she was going to drive out to my house if she had not heard from me by 1.
After calling Mom and having lunch, I took Claren for a walk. Then about 3:30, I fell asleep for another hour.
I hate sleeping so much; it is so wasteful and takes time away from important things like reading comics. I can't help it, though, and now I am going to bed before I fall asleep. After all, I have spent almost 12 hours out off my bed.
Friday, March 7, 2008
I am too funny for my own good
I left Verizon Wireless recently for AT&T. Mainly it was because I wanted to get a cheaper plan. I am now on the plan of my brother-in-law. It costs less and the service is better.
Verizon, though, is not an easy one to break up with. It is sending me postcards, saying things like "We want you back."
One of those postcards caught my eye as I was transferring into my LaZ-Boy tonight. Out loud, I responded: "But I don't what you." Hilarious, I know.
My jokey little outburst threw my transfer off, and I started to fall. I caught myself, but my left foot was caught under the rest of my leg. I couldn't stand up; I couldn't free my bent-backward foot. Finally, I just fell backward and hoped for the best.
I thought I was going to throw up at first, but that wore off and it just hurt like hell. Then my foot came out from beneath me.
I may rejoin Verizon just to stop the pleading postcards.
Verizon, though, is not an easy one to break up with. It is sending me postcards, saying things like "We want you back."
One of those postcards caught my eye as I was transferring into my LaZ-Boy tonight. Out loud, I responded: "But I don't what you." Hilarious, I know.
My jokey little outburst threw my transfer off, and I started to fall. I caught myself, but my left foot was caught under the rest of my leg. I couldn't stand up; I couldn't free my bent-backward foot. Finally, I just fell backward and hoped for the best.
I thought I was going to throw up at first, but that wore off and it just hurt like hell. Then my foot came out from beneath me.
I may rejoin Verizon just to stop the pleading postcards.
Sunday, March 2, 2008
Matt kicks ass
Maybe it is a good thing I have Friedreich's ataxia; otherwise I'd be a total jerk ... or at least a bully.
A while back I dreamed about beating up a third-grader. I had the decency then to make myself an eighth-grader.
The other night, though, I dreamed about egging kids to fight and I was 36 and they were like 10. What is wrong with me?
It was their fault, sort of. We have a huge Catalpa tree in my parents' front yard. The tree limbs go everywhere. It is not in the best shape now, but it is still a grand tree. I broke my arm swinging on it, and it was the best places to find "Freds," which is what we called empty locust shells.
The kids were climbing in the tree and sliding along its limbs like cartoon characters do, and it looked dangerous. One of my brothers was in the front yard but he didn't see them. Neither did my little sister, who was on the front porch with me.
I saw them and didn't like what they were doing, so I yelled at them to get down. I started walking toward them, too.
The kids started climbing down and jogging away down the street, and things get a little hazy at this point. One of them said something like "You can't tell us whet to do," but I don't recall if I provoked him. I do recall my response, though: "I'll tell you whatever I want, jackasses."
At this point they turned around and said something else and I retorted something, all the while wondering if I could take five little kids despite my FA. I knew I would be wobbly.
I never exactly found out. I don't recall the fight scene, so maybe I won, maybe I lost. All I do know is that afterward there was a Supersoaker water gun lying up against a fence where one of the kids left it.
A winner wouldn't have left his water gun.
Is it bad this makes me feel cool?
A while back I dreamed about beating up a third-grader. I had the decency then to make myself an eighth-grader.
The other night, though, I dreamed about egging kids to fight and I was 36 and they were like 10. What is wrong with me?
It was their fault, sort of. We have a huge Catalpa tree in my parents' front yard. The tree limbs go everywhere. It is not in the best shape now, but it is still a grand tree. I broke my arm swinging on it, and it was the best places to find "Freds," which is what we called empty locust shells.
The kids were climbing in the tree and sliding along its limbs like cartoon characters do, and it looked dangerous. One of my brothers was in the front yard but he didn't see them. Neither did my little sister, who was on the front porch with me.
I saw them and didn't like what they were doing, so I yelled at them to get down. I started walking toward them, too.
The kids started climbing down and jogging away down the street, and things get a little hazy at this point. One of them said something like "You can't tell us whet to do," but I don't recall if I provoked him. I do recall my response, though: "I'll tell you whatever I want, jackasses."
At this point they turned around and said something else and I retorted something, all the while wondering if I could take five little kids despite my FA. I knew I would be wobbly.
I never exactly found out. I don't recall the fight scene, so maybe I won, maybe I lost. All I do know is that afterward there was a Supersoaker water gun lying up against a fence where one of the kids left it.
A winner wouldn't have left his water gun.
Is it bad this makes me feel cool?
Subscribe to:
Posts (Atom)
