A brain injury is often an ‘invisible disability’ | Opinions

Jennifer E. Engen

To the editor:

I am an advocacy coordinator with the League for the Blind & Disabled, where my advocacy work is focused on promoting systemic change to improve the lives of people with disabilities.

March is Brain Injury Awareness Month. More than 1.7 million severe injuries are diagnosed each year in emergency rooms across the country. Many more are not.

Do you know someone who has survived a traumatic brain injury (TBI)? Chances are, if you look hard enough, you do. I did not until I did. That is the way it is. It just hits you like that. And then … life became all about the brain injury. Anniversaries, birthdays and the like are dated by the brain injury … The year of our Lord 20XX b.i. (before injury) or a.i. (after injury). You have no choice in the matter, and not just for you, for everyone close to you too.

I was 20 when I first regained consciousness. I slowly awoke from a coma to find that one side of my body was completely paralyzed and that I could not remember one moment to the next. That what once had been a promising life was no more. It is 30 years onward and I still live with effects of my injury every day. Enough time has passed that I have discovered workarounds or learned to live with nearly all the challenges and consequences. Most people will tell me, “I’d never have known.” If you do spend some time with me, you will probably sense something is off. I mean more than my balance, that is. I walk with a painful limp. That is pretty evident. My facial expression ranges from pained to flat most of the time, meaning I tend to have none. Vocal tone is much the same, just the one. You may not realize it, but if I pointed it out, you would recognize it.

I have what some call an “invisible disability.” I do not use a wheelchair anymore but the day when I will does not seem as distant with each year that passes. I do use a crutch for my balance, but not often enough considering my risk for falls and their increasing frequency. My intelligence still tests in the bright-normal or high-normal range, so I get by. Socially, I still miss cues and I misread expressions. It has all caused challenges in the workplace, but I have been told by Social Security Administrative Law judges that these challenges are not enough to qualify for disability benefits despite my record of more failures than successes in the workplace, despite the pain, despite the errors I make in judgment. So, I work. Just like you, without the right supports, I fail.

My outcome was good, OK maybe a bit better than good. I have no room to complain.

Each day is a blessing and I count it as such. The pain comes. I recognize it as such and go onward. I had a combination of the right family, the right therapists and medical care team and the right mindset to achieve beyond what anyone could have expected. Thoughts and prayers helped as well. My injury was severe enough that I should be in a nursing home. Fortunately, I am not.

March is Brain Injury Awareness Month, so if you see someone wearing a green ribbon, that may be why.

Andrew Fenker

Fort Wayne


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