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.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
It took me about 18 mo to acknowledge the impacts (NPI) of my severe TBI. It'll take even longer than that to convince acquaintances that I have an invisible disability that makes daily living a monumental challenge. I mean, shoot, I've already gotten myself kicked out of two intentional communities - because I seem like a flippant jerk head who is in total control of his panicked emotional reactivity in the face of overstimulation. :(
Anonymous replied on Permalink
I had a subdural hematoma in 1994 from a head injury. When I was released the whole world seemed so different but I kept pushing thinking I'll be o. K. Not the case I'm 51 now have had seizures , vertigo and memory loss and depression. When my surgeon pulled my staples out of my head he told me I would have alot of problems later on in life. Could somebody relate? I didn't ask what problems I was 23 at the time 51 now
Karen replied on Permalink
Dear Mr. Grant, thank you for writing about your TBI and coming to terms with your disabilities. My son suffered a Hypoxic brain injury nine years ago and is still coming to grips with his disabilities most prominent in trying to find and keep a job. However, he has the support of family and a wonderful, caring girlfriend!
Bret replied on Permalink
I also have suffered a TBI and DSM-5/4. I have many of the issues you have explained from a different type of head trauma.
Possibly not in your case but in mine a major issue is anxiety. It is like fear: (False Evidence Appearing Real)
Another personal issue that comes up is the family/spousal dynamic after the incident takes place and the many of the difficult phases of healing. Emotionally have to accept change behaviour post incident.
I respect the author's transparency and resilient approach til he had to stomach the fact, ("yes this did happen to me. Did I put myself into this position? Is it something I could have changed had I not?") That is something we will all have to struggle with, victim or not. I am a realist not a victim.
Will it change you? Yes. Will it change your family/ friend dynamic? Yes. Will familiarized people thru work, life, etc. notice a change? Yes. (Most of them) Do you have to feel like the victim all of the time? No.
Your article was beautifully written expressing that of, "invisible disability." Those who are working on dealing with this in the same boat. I pray you have understanding supportive family and friend who inform themselves.
Also, those of you who have a family member with what Mr. Grant & I have gone thru. Dont blame yourself and just be there and have some understanding and hope.
With my personal healing process two years later in a lot of ways, it is feeling like a shadow of who I used to be. Out of the darkness come light. Much respect to the author to attempt to change the harsh reality of what the actual situation is. We cannot reason with a hurricane but can certainly work together to rebuild a stonger foundation. God bless all
Shannon Bailey replied on Permalink
I no how you feel still have staples in my skull
Deb replied on Permalink
As I'm reading your story, you are telling (MY) exact story in a nutshell! My TBI was caused from a MVA (also T-boned), causing injuries to both my frontal & occipital lobes.
I have been fighting the demons resulting from my brain injury for the last 2 years, have been in denial & trying to live my life in normalcy, & wanting/praying/pleading for my life back as it was before!
It's comforting to know someone else not only understands, but feels the same pain & challenges I struggle with daily.
Thank you so much!
Mike Verdi replied on Permalink
In 38 years I refused to label myself since I was in the field before my injury.
I taught kids and adults with the"r"label and have never used it since.
As a teacher I knew I was different. That was enough for me.
When I label a person I imply that persons with that label all act the same way.
That is true of the common traits but take away the dignity of the person.
"People are People" I am different. I have a TBI however I do not want people who see my differences to get off-the-hook and stop trying to help me and others "He is disabled" that is his excuse!!
marymcintire replied on Permalink
thank you again !! i am only 2 years in the recovery process and everything you said about not wanting it to be true , it is just a mistake and it was all a bad dream - makes real sense to me - i keep trying to be who i was , but struggle , i try to ignore it , because in my mind , it didnt really happen .....or did it ? - if i distract myself , i dont have to even think about it -- but the memory thing you talk about is soooo real too - i used to love words and remembered how to spell them -- now after the coma ..... well lets just say i use spell checker a lot and just come up with a simpler form , but sometimes the words dont come to me at all ! that is frustrating :( - i look forward to reading what you write , although sometimes even comprehending what i am reading is like staring into space - i am going to try and get your book with the shattered glass and butterfly on the cover ;) ~ thank you again !!
Susan replied on Permalink
Just entering this world as my brother has a brain injury from a horrific motorcycle accident. There is damage. How much and what is yet to be determined. His brain still swollen still in ICU. Like many I am trying to gather as much information as I can to help him where I can. You give great advice. Thank you for sharing and opening my eyes to this new world.
Mike Verdi replied on Permalink
Give him support and understanding but empathy not sympathy.
"What would I want to be doing if I was in his situation?"
Push hard and expect the worst and live through it joyously.
That will enable you to smile at the smallest of achievements!!
Wiggling a finger or smiling or even breathing on his own!!
Thoughts and prayers to you and your family.
38 years forward!
Daryl Reilly replied on Permalink
The blog about the invisible disability really hit home. I suffered a frontal lobe injury about 14 years ago and I am only now learning these lessons. Thanks to a loving wife who is and will always be my best friend
Pat replied on Permalink
Acceptance, peace...rebuild are wonderful words. Keep up the journey. You are doing. Great job. Be patient and remember to love yourself.
Debra replied on Permalink
I completely understand your story as my son has the same life for many years now hit at 7 on his bike and coma 22 days and now 36 and having the worst time now than ever by people treating him so cruel, he tries to volunteer to pass some of his time when he is not doing music which he loves and enjoys so much but it seems these organizations like old folks home for example staff treated him like a weirdo and called him a pervert and creepy even when they know of his brain injury making fun of him and calling him cartoon names etc, every bad experience he is being effected and so depressed, hates to go out as has such a big heart and soul and he is an earth angel trying to help others and yet be treated like that hurts him so bad. Sad
Bob E Ruddy replied on Permalink
Yes, Yes, I owe you a story. Same, we have to meet. Bicycle, 2009 for me, and I am also invisible. I don't have your wonderful writing style, but I do have the thoughts. Your message will help drive me to send you a story. Someday we will go on a bicycle ride together. It is still my real pleasure to hop on my bicycle. :-)
Thank you for your book and blog writings,