When someone says they are disabled, what does that make you think? Do you automatically get a vision of a person who is confined to a wheelchair? What do you think if you meet a person who has been described as suffering from a disability, but they have nothing discernibly wrong with them?
Do you find yourself stealing glances at them when they’re not looking to see if you can spot what’s wrong with them – like they might have an extra arm they’ve secreted around their person, or some other sort of deformity that you failed to notice at first glance? Do you talk to them slowly and in short sentences because maybe they suffer from a mental deficiency that has robbed them of some of their intellect? Do you worry they are suffering from a mental illness and every time they laugh you check them for hysterics or other signs of an unstable mind?
When you suffer from a chronic condition that is disabling to the extent that you can’t work but that hasn’t incapacitated you completely, you get used to a wide variety of reactions. I get the feeling that some folk are disappointed on meeting me and discover that I look like a reasonable facsimile of normal. I’m not missing any limbs, nor am I in a wheelchair, foaming at the mouth, falling down in fits, or bursting into tears inconsolably for no reason whatsoever.
If you meet me at home, the only thing you’d notice out of the ordinary is that I don’t seem to be able to sit for any length of time and I spend a lot of time stretched out in bed. Other than that, I don’t seem any less capable then the next person. You don’t know I haven’t been able to get into a shower for close to five years on my own, or any of the other things that happen behind the scenes that are the result of my symptoms.
To be fair I’m just as capable of forgetting myself as they are of misinterpreting my appearance. When you’ve established a routine that allows you to utilize what few resources you have to maximum efficiency, it can be easy to forget that you suffer from limitations. It’s only when you push the boundaries of your comfort level that you are forcibly reminded of being disabled.
What’s really upsetting is that no matter how many times this happens, it’s as unpleasant as it was the first time. Somehow or other, I forget the previous experiences and suffer through the disappointment and frustration of the failure with the same intensity. It could be something as simple as not resting in the afternoon for a couple days in a row and forgetting what happens as a result, or the difference between writing while sitting up at a desk and lying in bed writing on my laptop that shoves my face in it.
It doesn’t matter what the cause is because the result is the same, and it takes a number of days to recover both physically and psychologically enough to get back on that even keel where I look “normal.” While the body doesn’t usually take any more time to heal from one occasion to another, the head is another story. The less it takes to remind me of my disability, the harder it is to overcome it’s debilitating effects, psychologically.
As I have a chronic pain condition caused by damage to the muscle wall of my pelvis, there is normally a direct correlation between the amount of physical activity I do and the amount of pain I’m in. When I can logically tell myself I’m feeling worse today than yesterday because of what I did, I have no trouble accepting the consequences, and can usually believe I’ll be better in a day or two.
Sometimes, though, there is no logical reason I can see for the pain to increase, and in those circumstances the feelings of frustration are such that it is difficult to believe myself capable of accomplishing the simplest of tasks. This is a dangerous place to find myself because those times are when it would be easiest to surrender to the condition and let it define my life completely.
Nobody expects a disabled person to do anything. You’re given an allowance by the government and pretty much forgotten about after that, except when they decide to check and see if you’re still incapacitated. (As a friend of mine, who had lost the majority of one hand in an industrial accident, put it, “They want to make sure my hand hasn’t grown back.”) So, if I were to retire to my bed for the rest of my life to take analgesics and gradually turn into a vegetable, I’d merely be fulfilling everyone’s expectations.
People talk of acceptance, as in accepting your limitations or accepting who you are and your situation in life, but what you have to decide is what you are willing to accept. Since I’m not willing to accept the definition of disabled as being unable, while at the same time I can’t say that I’m fully able, I have had to develop my own standard of what is acceptable.
The hardest thing to accept, and I still don’t do a very good job of this, is that there are times when there will be a rational explanation for how I’m feeling. It won’t matter if I had done barely anything or walked two miles the day before, and I’ll still barely be able to get out of bed and need to take my pain medication on a regular basis. On those days, I have to accept that I can’t do very much and that it would be foolish to make the effort and waste the energy.
At the same time, I have to accept that it will require a little extra effort on my part even on the good days to do the things I want to do. If I want to write, I will have to exert myself to focus through the pain, but learn how to pace myself so I don’t overdo it one day and end up unable to accomplish anything the next. Since some days it’s impossible to tell how difficult it will be to accomplish anything, I have to be willing to accept that I could have to stop what I’m doing, whether I want to or not, at a moment’s notice.
What it comes down to in the end is having the ability to accept that I can’t predict from day to day how I’m going to be, and I have to accept whatever it is each day gives me, whether I like it or not. It’s either that or become what most people imagine a disabled person to be, and that’s unacceptable.