I don’t usually like to use these blog posts to whine about my own situation. I much prefer to use this opportunity to try to campaign for better lives for us all. But lots of people are in a situation similar to mine, including many of the soldiers coming back from the Oil Wars.
The spectrum of the conditions that can be called “disabilities” is broad and includes completely different classes. Some disabilities are readily visible, like a missing arm or being confined to a wheelchair. But some are what are called “invisible disabilities.”
In the case of an invisible disability, the disabled person might appear to be perfectly OK. Their disabilities are somehow hidden from view – possibly mental, or a physical problem with their brains, or a problem with the function of another organ like the heart or liver. It could also be some combination of these types of conditions (brain and mental problems often go hand in hand), or something I haven’t listed.
My problem is a screwed up brain. And while some of you might think that it’s obvious, from reading my blog posts, that I have a bad brain, most people who see or even are acquainted with me don’t realize it. I look and, for the most part, seem “normal.”
I was 29 years old when my brain just decided (without consulting me) to start bleeding, deep inside my skull. In fact, it was almost at the center, so far from my skull that the doctors told me, again and again, that it just couldn’t have been the result of a big hit while I was playing hockey, which seemed like the logical explanation. Anyway, I had not been hit in a game for at least a couple of weeks when this happened, and at the time I was only playing in an amateur league where you’re actually pretty likely to finish the game with your armpits still on opposite sides of your body.
I recovered from that first hemorrhage surprisingly easily (thanks to a highly skilled surgeon) but it happened again, 2 1/2 years later. It was this second operation that left me in pretty bad shape, for a while, with the main, ongoing problem being mental fatigue.
So much in life depends on making the right choices and setting priorities reasonably well. And these are exactly the kinds of things that became difficult for me along with concentrating on anything difficult for a length of time. And while every person who has has what is termed an “Acquired Brain Injury” experiences different symptoms, this is very common. The pressure of the consequences of our choices just overwhelms us, sometimes.
And of course, there’s the head pain. I use the more general term “pain,” rather than “headache,” because it can take many forms. After the second of my two major brain surgeries, my head hurt for two years. It wasn’t drastic, sharp pain, but a dull, fuzzy feeling that just became my “new normal” for that time. I’ve met several people, since then, that say they are in pain every day from their brain injury. Most of these people told me this with a smile. I think this was, in part, due to the fact that they had adapted, as I have, and in part due to their happiness to talk to someone like me… someone who had been there.
Now, I can sometimes go several days without my head hurting, but then there might be a week when the pain is hard to shake. I just never know what the coming day will be like.
When people meet me, they usually see nothing “wrong” with me. But sometimes, if someone talks to me for a while, I may still look OK, but inside I might be struggling to stay with them in the conversation. Or I might think of a question, or a response to something the other person has brought up, but then have to fight through the mud of my own mind to think of it when the moment arrives when I could vocalize these thoughts.
I have to consider commuting very carefully when calculating whether or not I could take a particular job or participate in an activity. If I have to drive for an hour, I probably won’t be able to get through four hours of work. In fact, there aren’t too many jobs I could take in which I would be able to work an eight-hour day.
This is how an invisible disability is different from a visible disability: It’s even more difficult to know how to make up for it. Don’t get me wrong… I don’t think I’d trade situations with someone who has had his or her leg blown off by a car-bomb in Iraq. But that kind of injury has been relatively well-understood for a long time. Thanks to the Americans with Disabilities Act (ADA) more and more buildings have wheelchair ramps and accessible bathrooms, for example.
But what accommodations do you make for someone who has a dark, painful fog on his or her brain? How do you help a college student that, even though in possession of the intelligence and ability, can’t write a paper in the time allotted, before the semester ends because that student can only work for a limited time before his or her brain says, “Time to rest! And if you don’t listen to me, I’m going to shut down!”?
Debi Palmer, founder of the non-profit Brain Injury Connection in the Bay Area of California, says that people think of us as either, “lazy, crazy, or stupid.” In my experience, people don’t usually say anything like that, but you can often see those thoughts turning behind their faces. Some think of us as the now infamous “47%,” the “takers” of society. And why wouldn’t they think those things? As I’ve said, we often appear to be just fine.
In fact, those of us with some sort of conscience, ambition, or inner critic question ourselves every day. We wonder how much of our “disability” is real and how much is based on the fear of feeling the helplessness that we felt when our condition was at its worst. That fear can, in itself, be debilitating. It’s really a form of PTSD.
Let me promise you something. NOBODY in their right mind would EVER want to fake PTSD or any kind of mental disability. The life of a disabled person is no picnic. It’s not at all easy to get help in any form, much less money. I have never received one dime of support from the government – not in the 16 years since my first brain hemorrhage. I’m extremely lucky though, because my parents have been able to help keep me from becoming homeless. Many aren’t so lucky.
I would give anything to get my brain back. I’d give anything to be able to work hard for 50 or 60 hours per week on the things I’m passionate about, even if I only earned minimum wage. I’m sure many people in my situation feel the same way.
Those of us with an invisible disability are not lazy, crazy, or stupid. Our world has been changed in a way not that different from someone who has lost an arm or a leg. The fact that most people don’t have the same deficits means that we often can’t keep up… not with the pace of life that’s demanded by our peers, or by our own expectations.
But like the people with visible disabilities, we constantly strive to figure out ways to deal with our new lives.
Tom Rossi is a commentator on politics and social issues. He is a Ph.D. student in International Sustainable Development, concentrating in natural resource and economic policy. Tom greatly enjoys a hearty debate, especially over a hearty pint of Guinness.