Life changes when you are disabled—and I don't mean the obvious fact of your disability. Your life constricts; not only can you not do many of the things you used to define yourself by, but you're faced with managing a life over which you have very little control. For many, the first thing they do on awakening is check in to their bodies and try to figure out what sort of day this will be. On the good days, we may be fairly normal, able to leap small buildings at a single bound. On the good days, one of the hardest things is to fight the temptation to do *everything* one has gotten behind on during the bad days. After a while, we know that doing such a thing—overdoing to "make up"—results in many more bad days than good.
The bad days, though, those are terrifying. They're unpredictable; you cannot use time management to schedule Tuesday as a "bad day" when you will be out of commission. You figure it out when you wake up in the morning, and adjust your expectations from there. Although I'm sleeping through most of the night lately—for the first time in years—I'm waking up in my usual manner, when the pain from sleeping in one position or another gets so bad I can't sleep any more. Waking up in intense pain is often a signal this is going to be a tough day, which is a good thing because I can begin to adapt.
Our Western culture, particularly in America, tries to celebrate the idea of the disabled person who overcomes massive disability to do something great, like the paraplegic who climbed Mt. Everest. Those stories move people to think the human spirit is so strong that it can overcome anything—but it can also crush your soul when you realize you don't have it in you to climb out of bed on the bad days. The other problem is that people around you tend to apply the myth of overcoming the disability to you, making expectations of you that you simply can never meet. And then they are disappointed in you for not meeting their expectations, blindly ignoring the daily struggle you go through simply to manage well enough.
It's not so bad for people with obvious disabilities, where people can readily see the impairment the disability brings to the individual suffering them. Although pity can be even more corrosive than disappointment, when you get right down to it. Most of us would rather have understanding and help, freely offered, than to be pitied. Even when I recognize that it's a defense mechanism people use to pretend that such things cannot happen to them, it's corrosive.
But when your disability is invisible, or is composed of a bunch of things that interact such that your days are manageable only by sorting through a "laundry list" of possibilities, the situation gets much worse. You try to be normal, to do things on the good days like everyone else, and to meet their expectations—and on the good days, you can. But then you wake up and know its going to be a rough one, and expectations have to shift—but the people around you, who cannot see your disability, simply don't understand that you're doing your absolute best to manage.
I got in trouble teaching for the University of Phoenix for just this problem. I could manage posting and working with students, grading papers, and all the other work of a teacher 4 days out of 7, but not 5. The contract said 5, and they use a computer program to monitor how many days you post and do certain activities—and despite the fact that on my 4 good days out of 7 I was generally getting my work done, I wasn't meeting the metric. So I got told I needed better time management skills, and to take training to do better. And I'll admit that I did learn some things, but not anything that I can use directly in the face of the bad days—which I cannot predict because they don't happen on a schedule.
I eventually had to quit that job because I could never live up to their expectations, and they would not work with me within the limits of what I could do—they had their computer program and if I failed a tick of the metric, I was in trouble and needed to fix whatever it was that caused me to screw up. I can't live that way—wish I could—but it doesn't work in the face of good/bad days.
Moreover, I've been getting worse, with more bad days than good lately. In addition to all the pain conditions that can overwhelm me with sheer agony, making it hard to move or do anything, in August I was diagnosed with several areas of brain damage and a blocked artery in the brain. Well, that surely explains some of the horrible headaches I've been having, such as the 5 1/2 week one in October of 2010. You try functioning in a strictly metered job environment when you're head is splitting, your vision is blurry and doubled, and you get exhausted quickly trying to do anything at all. It doesn't happen. And then everything cascades down on you into financial and other difficulties that may be too hard to get free of anytime soon.
Thing is that I really don't know what the ramifications of my current problems are, and that is terrifying, especially when things suddenly take a turn for the worse. A few weeks ago, the problem I have of not getting enough oxygen to my brain got so bad that I started slurring my words like I was severely drunk—without the pleasure of being able to enjoy getting there. I'm still waiting to get in to see a neurologist to find out if anything at all can be done—I go down to UCSF on the 17th of January, hopefully to get some ideas of what we can expect and maybe fix—and the headache and confusion, speech slurring and sheer exhaustion of fighting it all is taking its toll. You know you're in trouble when your doctor is scared.
We've been trying an experiment with Imitrex, to see if it will open up the blood vessels in the brain to get more oxygen through, and it seems to help when I'm at the worst point in all this. But I'm still finding myself essentially tethered to the oxygen machine, or carrying tanks around trying to get things done. My disability is now quite visible, but I'm still largely on my own for getting things done. People just want to know when I'll get better, something I'm not sure of at all.
My friends and acquaintances do care, and want to help me any way they can. On the bad days, I need physical help, and unfortunately, live to far from anyone who might help me that way. It's one of the downsides of living alone with cats; there's no one to help you out. Although the sheer resentment I've encountered from some of my caregivers when I have had someone to help has often been horrific. People get burned out on giving care to someone who is chronically ill, and whose good days makes them seem almost normal.
What gets me through it all is my sense of humor. I rage, and I despair; I fight the depression that goes along with chronic pain and uncertainty. I do the best that I can, and try not to beat myself up on the bad days. It is what it is, and I can only do what I can, even when that fails to meet the expectations of others. It's hard enough to adjust my own expectations to match whatever is happening today.
Yesterday was a really bad day, when the mental confusion and the slurring speech was worse than usual. I finally broke down and took medicine late in the day, and I had to spend most of it on oxygen. The problem is that I feel fine on oxygen, but rapidly begin to falter as soon as I go off of it. And because I'm less active, the other disabilities—the chronic pain ones—kick up so that I woke today clearheaded, but hurting enough that it will be a while before I go back to sleep. So I'm writing instead, trying to explain the unexplainable.
Some of you will dismiss what I'm saying as whining, thinking that you would do a much better job managing your disability than I am. That's your fear speaking, for by denying what I'm going through you mentally make the case that it would not happen to you. I've seen it over and over, and I really hope nothing ever does happen to you that would cause you to understand me. I have more compassion than that.
Others of you will feel sorry for me, but don't pity me. Recognize that I'm struggling to do the best that I can, sometimes in the face of considerable odds, fear, and despair. Help me to laugh—that really is the best medicine. Try not to get compassion fatigue; my disabilities are not going anywhere anytime soon, I hope. Of course I'd love it if someone could wave a magic wand and they'd go away, but that's a fantasy. And pursuing endless fantasy treatments just ends up costing me what little is left of my money.
All I ask is patience. On the bad days, I may not even reach out to anyone because I know that it gets old. I don't get better, and compassion fatigue sets in. On the good days, I reach out and seem normal. But as things shift to more bad days than good, I really appreciate it when people reach back to me, even if I'm not in good shape to talk to them, or in the best of moods, or happy, or whatever. It keeps me alive because I know that people do care, and that I've not been abandoned because I've failed to live up to expectations—mine and yours.
As to the future, we shall see. I'm in the undiscovered country, where I don't even know the landmarks, much less the terrain. All I can do is go from day to day and try to cope. And remember to laugh. Silly cat antics help. So do friends.
Much love,
Michael
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