Ten years ago I found myself in a place I thought I had left behind, and it made me think that regardless of how far
I had come, I still had a long way to go in my post-TBI travels.
Our family business, in it’s sixtieth year…the one I had been able to lean on, to gradually learn to function in with family support, with not too much asked of me…closed.
My life had seemed almost normal, protected as I had been over the previous twenty five years, and having the business close was a shock to my system. I quickly learned that my life was far from normal, and was confronted by the reality that I had, through good fortune and family support, been able to escape the full brunt of my circumstances. In fact, I realized I had been in complete denial and ignorance about my abilities and how much my family covered for me.
Sure, there were things that were problems…such as processing and remembering conversations, reading books, following instructions, and being subjected to bright lights and loud noises, but essentially, I didn’t dwell on the stuff I had problems with, and, instead, focused on the stuff I could do. That was how I got by, and I found it would work until something new came up and I would get completely flummoxed. When that would happen, I would question myself, and then get angry and depressed.
Generally, though, I pushed forward as though I was oblivious to what was going on. I kept on trudging forward, stooped over, as if continually walking into hurricane force winds. This was the only way I knew how to survive.
But things changed when our family business closed. I was almost 50 years old and I no longer had that protection. My brain injury was, in many ways, ancient history, but its effects were as present as that day I walked out of the hospital.
The big lesson for me was that I was going to have to accept my disability in order to move forward; because that was what I was, Disabled. Accepting that was hard. I hated being referred to as “disabled”, or referring to myself that way; it just didn’t seem human. I had spent 30 years trying not to be disabled; even thinking that sometimes I was doing a decent job at it.
This was something I couldn’t escape from. Although “disabled” was a label I didn’t like at all, I was going to have to learn how to live with it and start over as a disabled man.
Even as I tried to accept this new status, there were others who didn’t understand; for they looked at me and couldn’t see. I thought about the times I looked at myself and was unable to see or understand, and thought, “How can I blame them?” How can I expect them to accept the fact that I was disabled when I am having difficulty with it?
We experience a great upheaval in our life when realities and definitions change; especially when these changes are thrust upon us, and don’t occur as a result something we planned or sought. Adapting and evolving to life changes, whatever they may be, are difficult but necessary skills, and, unfortunately, there is no way to adequately prepare ourselves in anticipation of these occurrences; we’re all just thrown into the fire.
So, into the “disability fire” I went, forced to deal, not only with my new reality. but also with any preconceptions I had concerning the word disabled. This new reality, on its own, is hard enough, but the preconceptions, or the way I reacted to what the word meant for me, were hard also.
The first thing I had to get through was that, regardless of what kind of shape I was in, being “disabled” was a blow to my pride. I had to hold my ego in check and accept the word for what it was, a label other society used.
Eventually, I saw that I couldn’t let my life be defined by a word other people used to describe how I did, or didn’t, function in society. What was most important was not the way other people referred to me, or the relationship I, personally, had with the word “disabled”, but the relationship I had with myself and how I fulfilled my role as a human being.
Calling myself disabled, or having someone else call me that, didn’t mean the vital roles I played as a father, son, brother and friend were any less important, or that I was any less valuable as a human being. Even though, at times, I could feel as invisible as my disability; and the way I defined and valued things changed, what I couldn’t do was let that impact the way I felt about myself, or let my disability affect how I valued my contributions.
In the final analysis, it didn’t really matter what anyone thought about the way I was able to function in “their” world. My sense of self was based on the knowledge of who I knew I was, and how I was able to “be” in the world when measured against my own expectations and not the expectations of others.