Twice today I got asked the question "are you worried?" Specifically, I got this question from coworkers. I'm in the middle of a really bad flare up. I can't explain how bad the pain is. As an added mental hurdle, before this flare up, I was having an extended period where my knee was behaving itself. So this setback seems to hurt even more.
So am I worried? Yes, about so many things. Every setback carries a risk of losing more of myself. I'm worried that I won't be able to keep up with my job. I'm worried that I'll lose my independence. I'm terrified that my pain will get worse.
Of course, most people's reaction is, go to a doctor. Well, the truth is that I have seen 9 doctors, and they've given up. Forgive me if I don't hold out hope that number 10 will be the lucky one.
Showing posts with label flare up. Show all posts
Showing posts with label flare up. Show all posts
Thursday, May 8, 2008
Wednesday, May 7, 2008
Hope
Hope seems like a good topic for a first blog. But this probably won't go as you were expecting. You see, hope is something that I see as a knife. Useful, but painful when you slip. For me, hope is dangerous. It brings with it dizzying highs, and depressing lows.
I should probably introduce myself. I'm 26, and disabled. To be more exact, I have neuropathy. Basically, the nerves in my left knee are damaged and they fire for no reason. Pain is supposed to be an indication of injury, but for me, the nerves went haywire (I'll explain how I got it at another time). There is no cure, and for me, none of the treatments work. Ten years later, I've been using a wheelchair for five years, and for me, it is the right choice. I can walk for short periods of time, but walking too much can cause the nerves to be ticked off, and then I have to deal with more pain. That's probably enough for now.
Back to hope. My disability often moves in waves. I have good periods where the pain is under some sort of control, and I live my life fairly normally. Then I have a flare up, and all bets are off. I just went through a several month long period where things were really going well. I was managing my disability, and I was starting to feel pretty good. I felt in charge of my life again. Then I slipped, or at least my knee did. I fell, nothing unusual, but something went. My high, my hope that I would be able to pull off living alone and being independent took me crashing down. I fell physically, but the fall from hope hurt worse. The flare up has plunged me into doubt over whether or not I can manage to keep my job, keep my apartment, keep my independence.
With the way things are right now, I'll have to go back to trying new medications. Anti-convulsents actually. Most painkillers don't work on neuropathy, and finding a doctor to prescribe painkillers with no end in sight to a 26 year old is tough. But the pills make me stupid. I lose my ability to think, and the intelligence that I have relied on to keep me going slips further.
Each flare up has cost me a dream. First, I was a springboard diver. I loved it, and it was my place, my method, of release and expression. I lost it. The next flare up brought more surgeries. And with it, my free time. School breaks were suddenly filled with doctors visits and my free time was dedicated to physical therapy. Then my ability to walk. After five years on crutches, I gave up, and got my first chair. And suddenly, I was disabled. Getting a chair made me disabled in other people's eyes for the first time (more on this later). Oddly, I felt freer, except for being treated as a second class citizen. Then, I lost math. I know, most people hate math, but I loved it. I loved that there was a right answer, and that if I worked hard enough I could always find it. I loved that if I proved something, it stayed proved. But with the pills that we were using to try to control the pain, and the surgeries, and the stress, I couldn't do it anymore. The horror of realizing that a proof that a month ago was easy, was now beyond me is still with me. I can't explain how scary it was to let go of my image of myself as a capable student. For the first time ever, I had to drop all of my classes. This flare up has the chance to take even more.
I've veered off topic a bit here, but I think it shows how dangerous hope can me for someone with a disability. Because everytime you let yourself believe that your disability is stable, your body can betray you and let you down.
There's also the hope that places will be accessible. I can't count the number of places that have told me that they were accessible, only to arrive and discover that they have no idea what they are talking about. I've made a list of questions to ask instead, but it's clear that they still don't get it. Every time it happens, I get reminded that I am considered a burden. That accommodating me is seen as an added burden. 17 years after the ADA went into effect, I can't go anywhere without checking accessibility. Silly to hope that people will follow the law.
You see, hope sets me up for the dizzying fall, because all too often I feel like I am hoping for something beyond reason. I feel like my expectations are reasonable, and still, I fall.
I should probably introduce myself. I'm 26, and disabled. To be more exact, I have neuropathy. Basically, the nerves in my left knee are damaged and they fire for no reason. Pain is supposed to be an indication of injury, but for me, the nerves went haywire (I'll explain how I got it at another time). There is no cure, and for me, none of the treatments work. Ten years later, I've been using a wheelchair for five years, and for me, it is the right choice. I can walk for short periods of time, but walking too much can cause the nerves to be ticked off, and then I have to deal with more pain. That's probably enough for now.
Back to hope. My disability often moves in waves. I have good periods where the pain is under some sort of control, and I live my life fairly normally. Then I have a flare up, and all bets are off. I just went through a several month long period where things were really going well. I was managing my disability, and I was starting to feel pretty good. I felt in charge of my life again. Then I slipped, or at least my knee did. I fell, nothing unusual, but something went. My high, my hope that I would be able to pull off living alone and being independent took me crashing down. I fell physically, but the fall from hope hurt worse. The flare up has plunged me into doubt over whether or not I can manage to keep my job, keep my apartment, keep my independence.
With the way things are right now, I'll have to go back to trying new medications. Anti-convulsents actually. Most painkillers don't work on neuropathy, and finding a doctor to prescribe painkillers with no end in sight to a 26 year old is tough. But the pills make me stupid. I lose my ability to think, and the intelligence that I have relied on to keep me going slips further.
Each flare up has cost me a dream. First, I was a springboard diver. I loved it, and it was my place, my method, of release and expression. I lost it. The next flare up brought more surgeries. And with it, my free time. School breaks were suddenly filled with doctors visits and my free time was dedicated to physical therapy. Then my ability to walk. After five years on crutches, I gave up, and got my first chair. And suddenly, I was disabled. Getting a chair made me disabled in other people's eyes for the first time (more on this later). Oddly, I felt freer, except for being treated as a second class citizen. Then, I lost math. I know, most people hate math, but I loved it. I loved that there was a right answer, and that if I worked hard enough I could always find it. I loved that if I proved something, it stayed proved. But with the pills that we were using to try to control the pain, and the surgeries, and the stress, I couldn't do it anymore. The horror of realizing that a proof that a month ago was easy, was now beyond me is still with me. I can't explain how scary it was to let go of my image of myself as a capable student. For the first time ever, I had to drop all of my classes. This flare up has the chance to take even more.
I've veered off topic a bit here, but I think it shows how dangerous hope can me for someone with a disability. Because everytime you let yourself believe that your disability is stable, your body can betray you and let you down.
There's also the hope that places will be accessible. I can't count the number of places that have told me that they were accessible, only to arrive and discover that they have no idea what they are talking about. I've made a list of questions to ask instead, but it's clear that they still don't get it. Every time it happens, I get reminded that I am considered a burden. That accommodating me is seen as an added burden. 17 years after the ADA went into effect, I can't go anywhere without checking accessibility. Silly to hope that people will follow the law.
You see, hope sets me up for the dizzying fall, because all too often I feel like I am hoping for something beyond reason. I feel like my expectations are reasonable, and still, I fall.
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