Coming to grips with having a disability has taken me many years. Unlike many who have had challenges from the start, the first forty-nine years of my life were spend living without a disability. In one respect, this has made accepting my new life more difficult. I have something to compare it to.
A few weeks ago, I shared with my wife Sarah that I am getting tired of pretending. I often go to superhuman lengths to “appear” uninjured, struggling to speak, using precious and limited energy to make sure that I walk a straight line when vertigo strikes, working hard to do all I can to show the world that I am as uninjured as I look.
Trying to be who I was and trying to not let my disabilities be noticed denies who and what I am. And that, kids, is a lot of work.
“I am just going to be who I am,” I said to Sarah in a quiet moment between us two. “No more burning up precious energy pretending I don’t have what I have.”
A surprising sense of freedom has come with this decision. Frankly, if someone can’t accept me wholly for who and what I am, they don’t belong in my life. Brain injury is like that. It’s like pushing the reset button on life’s priorities.
There is a real challenge in being invisibly disabled. Over time, people forget that I was hurt as deeply and profoundly as I was. While I don’t have a million dollar smile, a warm and sincere smile with a genuine “hello,” and I can pass easily for someone without a brain injury.
The expectations of others is that I can do all that I used to.
But the reality is this: I am a disabled adult.
Earlier this fall, I attended a neuro conference here in New England. Attendees included fellow brain injury survivors, members of the medical and professional community as well as others who have had lives touched in some way by a brain injury.
As I had no name tag, several attendees asked me if I was a survivor. I wear little evidence of my brain injury on the outside. There were other survivors there who showed some of the telltale signs of an injury – a slight limp, perhaps an arm cradled, a trach scar.
And in one respect, I was a bit jealous.
They don’t have to explain away an injury. Others can tell, with relative ease, that something is amiss. And being aware of that, others will most likely be a bit more understanding, patient, forgiving. No explanation needed.
There is such an irony here, working my backside off to look as “normal” as I can, only to pay a price for it by the expectations set by others.
Sarah is out of town on a business trip. She is going to be gone until early next month. It is the first time I have been on my own since my TBI. It has been exhausting, my routine is off and I miss my boo. In my old life, I would have taken this more in stride. Even now, as I try to hold it all together like I would have in my old life. And the price I pay is steep.
But I continue to learn.
By being less worried about maintaining a life I no longer am capable of living, I free up system resources. Being less concerned about “faking” being normal, I honor who I am and I come to a place of being better able to self-advocate. At close to four years out, I expect this is just part of the natural process. But it’s still new to me.
Put two identical cars side-by-side. The year, make and model are virtually identical. The only difference is on the inside. While both cars are expected to drive all day, one car has a full tank of gas. The other car? It’s only got a quarter tank. Even though both cars look identical, one does not have the same ability as the other.
And so it is in my own personal fast lane. I only have a quarter tank.