Living with an Invisible Disability

While there are many people who have lived with lifelong disabilities, I am a relative newcomer to being disabled. For the first forty-nine years of my life, I was fully-abled. Everything changed in late 2010. I was cycling in southern New Hampshire when a sixteen-year-old driver t-boned me. In two ticks of a clock, I went from being fully abled to living the life I live today.

This was not the plan I had for myself.

Unlike many who are visibly disabled, I live with what is commonly called an “invisible disability.” Millions of us that live in today’s society face challenges that are not visible to the naked eye. The list of invisible disabilities is long: autism, fibromyalgia, PTSD, depression, multiple sclerosis, and many mental illnesses are all part of this family of unseen disabilities.

Though the Americans with Disabilities Act (ADA) recognize most hidden disabilities, most of us with invisible challenges fly just under the radar screen of society.

When you see someone in a wheelchair, or perhaps walking with a companion animal, it’s pretty clear that that person may be disabled. But not so with people like me. I can drive without assistance. I work on a part-time basis, spend time with my granddaughter, and go about my day as many others do.

However, looks are deceiving.

My cycling accident left me with Post Traumatic Stress Disorder (PTSD). While a common misconception exists that PTSD is exclusive to the military community, many who experience different kinds of trauma also live with the daily challenges that come with PTSD.

My life today feels like an acronym soup, often defined by short bursts of letters that have indescribable effects on my life. In addition to PTSD, I live with PCS (Post Concussive Syndrome) as well as the lasting effects of a TBI (Traumatic Brain Injury).

Like many who have experienced trauma, my life is now split between “before and after.” My life before my accident was average. In fact, some might call it downright dull. I went to work as a self-employed, self-sufficient individual. I’d suit up and show up, pay my bills, spend time raising my children, and move forward toward a future that did not include trauma. In fact, I’d planned to remain busy, happily married, work for another fifteen years, and then retire, doing things that retirees do.

Years ago, I heard a saying that still makes me smile. “If you want to make God laugh, make plans.” If there is an element of truth to this, he must have enjoyed a belly laugh at my plans.

Accepting that I am a disabled adult has been a long and painful process. I have fought the disabled moniker since it was first presented to me in early 2012 when a well-respected doctor let me know that I was “permanently disabled” because of my injury.

How dare he call me disabled? For years, I hated him for that. I am not a big fan of the “H” word, but hate him I did. I fought his diagnosis for many years.

I had completed neuropsychological testing about a year after my injuries in a fact-finding effort to see where my deficiencies remained, and what I could do to speed my recovery. The test results were quite grim. In a couple of key categories, I scored in the bottom 5%.

I, once prideful about my perceived life successes, now sat at the bottom of my cognitive class.

Sure, my tests showed that I was in the lower 5% for complex problem solving and verbal recall. A speeding car had hit me a year earlier. Your scores would have crashed too if you met a teenage driver at 35 MPH with nothing but a plastic helmet to save your life. But disabled? No way. You have got me confused with someone else, someone who might actually be disabled.

I did all I could to prove him wrong. I moved on with my life, wrote a couple of books, started a new career and continued to stumble forward in this new second life.

I’ve since learned that it is easier to realize perspectives in the rearview mirror. With the passage of time comes a new clarity. Here is where it gets hard.

Humbled, I eventually had to admit that the doctor was right. I am disabled. This is perhaps the biggest single mea culpa of my life. I needed to come to terms with my disability in my own terms and in my own time.

For several years, I tried to live my life as I did before my accident, but there were challenges at every turn. Vertigo created the occasional appearance of drunkenness, though I’ve not had a drink for decades. Slow cognitive processing speeds meant that I lived in a perpetual state of time delay. Sure, you can ask me a question, but don’t hold your breath waiting for me to answer. It may take some time for me to understand what you just asked me. Memory issues mean that I might ask you a question, then ask it again, and perhaps a third time for good measure.

None of these challenges is blatant to the naked eye, but spend a bit of time with me, and you’ll learn soon enough that I’m not as normal as I look. Such is the nature of being invisibly disabled.

I fought my fate for close to seven years until I could not fight it any longer.

It has only been over the last few months that I have accepted what I had been most afraid of. By accepting that I am a disabled adult, something unexpected happened—I have gained freedom. I no longer need to struggle to be who I was before my accident.

I am more at peace with my life than I have been in years. I am slowly learning that even though I am disabled, there is still much that I can do. And quite unexpectedly, I feel relief. I no longer have to prove myself. The internal conflict about who I am and how I fit into today’s world has finally gone quiet.

It is in that newfound calm that I will continue to rebuild my new life.