I Am Disabled

I Am Disabled

"I am disabled."

I spit out three simple words with about the same degree of dignity that a cat yacks up a hairball.

It was an unexpected admission that brought about unexpected emotion.

Just about every person with a brain injury I know defines life by "before and after." We count the days, months, and years since both "births." We are born into this world originally and we start lives anew as a person with a brain injury.

I am 52 years old and 3½ as well. If you are a brain injury survivor, you know exactly how this feels.

And so it is for Sarah and me. In our lives "before," we were frequent travelers. But brain injury has a way of making life smaller — much smaller.

Tough decisions had to be made during that abysmally tough first year or so after my traumatic brain injury. As my ability to earn a living continues to be compromised, we had to sell my Jeep. The monthly payment, easily made before I was hit that day by a car on my bike, soon became the cause for a monthly panic attack.

Hello, traumatic brain injury. Goodbye, Jeep!

No longer is there a sense of sadness about this as material "things" come and go. I've learned that pain comes from holding onto things I'm supposed to let go of.

Like a Jeep Wrangler ... or my old life.

In our "old lives," we were more than occasional travelers. But alas, said that Winnie-the-Pooh narrator who offers the running monologue in my head these days, many of those adventures remain in the past.

Which now brings us back full-circle to being disabled.

Sarah and I recently took a trip — one of the fewer we take. While trying to set up seat assignments, the US Airways online seat selector quickly became my nemesis. Try as I might, I was unable to find side-by-side seats for Sarah and me. I need to be painfully honest here ... this once confident traveler is now more than a little frightened by the thought of sitting alone for a couple of hours during a flight.

In fact, I was scared witless.

Over time, as life with a brain injury becomes more familiar, I am ever so slowly getting just a bit more comfortable asking for help. This gradual acceptance of my new limitations has come to me at a snail's pace, but it has come.

And I made a simple decision to call the airline.

A sincere and compassionate representative named Susan took my call.

"I am disabled," were the first three words I spoke.

I shared my challenge of being unable to find two seats together. And I openly shared that I have a traumatic brain injury.

Five minutes later, with a few magical mouse clicks on her keyboard, this angel not only has Sarah by my side for our flights, but she has moved us closer to the front of the plane

"That will make things easier for you, Mr. Grant. Is there anything else I can do to help you?" she asked.

Tears welled in my eyes; I humbly thanked her.

Brain injury recovery does not happen alone.

By far, the toughest part of my journey, the darkest time of my entire life, in fact, was the time before I met other people with brain injury ... when I walked the TBI path alone.

But I've learned that there are people along the way, some part of the brain injury community and others who are simply kind members of our shared human family, who are happy to help us find our way.

Comments (30)

I don't call myself disabled,yes i have disabilities it doesn't define who i am.

Thank you for putting into words what I've been thinking.    I've had to give up so much since my stroke two years ago.  I used to walk all over by myself; now I need my rollator and a companion.  I can't work due to balance and vision problems.  So much has changed.

Thank you again.

I also do not call myself disabled. I tell people "I had a brain injury and need your assistance". And most people seem to understand that, but for me, I did need to understand that asking for help/assistance did not mean I failed.
I am so thankful for this article! It took me awhile to admit I was disabled after my TBI . But the reality is I am different now... I am still a whole person just slower. Pride is a funny thing.
I am so thankful for this article! It took me awhile to admit I was disabled after my TBI . But the reality is I am different now... I am still a whole person just slower. Pride is a funny thing.
My husband survived a massive Stroke 10 years ago. To this day he has difficulty with the word "disabled". Thankfully (?) he was in the hospital, his Stroke was caused by his quadruple bypass. The after effects are Aphasia and Apraxia. He carries a "I have Aphasia I am not drunk' card with him. He considers himself "differently abled".
Thank you for your honest sharing. I will read this to my severely TBI husband. Hope this will open up his courage in living life n pressing. As a caregiver, i can't help him when he doesn't have the motivation to help himself. It's so tiring too, reminding him every second the same thing over n over. Even during water therapy, the elaborate process of bringing him there is minimized when he'll sometimes refuse to cooperate by pulling the floating buoy apart with his strong right hand. Friends, pls advice if you have proven methods in triggering motivation for severely TBI survivor. Many thanks in advance!
I board a plain whenever the announcement for "those traveling with children or in need of extra time" is made. I ask to speak with the head flight attendant, explain that I have a Traumatic Brain Injury and that I am on anti-seizure medications. I point out my knapsack and say, "If a seizure happens, just keep me safe and then transport me to the nearest hospital upon landing. My medications and emergency contacts are in this knapsack, and all my other items are in this carryon. I didn't check any bags." The airline staff are always grateful for my comfort in telling them my concerns. Some will see if they can more me forward or check if a traveling companion can be seated together, if I am not traveling alone. "By the way, I've never had an in flight seizure. I just want you to know what to do in case one happens," I reassure them. It is amazing the kindness and service you receive, when telling others the truth. It takes a weight off my shoulders and off theirs too!
Great article! I appreciate the input from other members too. I had a similar experience asking for help from an airline. It is quite humbling. I will try the I have a brain injury line. Lots of people don't know what a TBI is.
Thanks for your article. It takes a while to admit you can't do something that in the 'past' was so easy and didn't require assistance. I sustained an mTBI 4.5 yrs ago tho' as my Neuro Psychologist will say '...there's nothing MILD about a mild TBI...' I'm continuing to learn, to realize & accept too that some of my 'old' friends choose not to help, be there for me or even accept the 'new' me. A hard lesson to learn and, indeed accept. '...We liked you the way you were...' Yes, so did I. The difference is, they can walk away, I can't, I have to live with me, accept the way things are and be amongst those who do accept & embrace my differences. Sue
Yes. Great article. I have a TBI as of May 1st 2010. Good job! I understand. :)
Thank you for this

It normally takes anywhere from 3-5 years for someone to admit they have a disability.  I finally began telling people on the phone that I had a brain injury when they were speaking so fast that I couldn't understand what they were saying.  I also learned to use humor as much as possible when it comes to the things I can no longer do - e.g., I tell people I'm two years old when I go down stairs, as I can only go one step at a time.

Thank you for sharing your story with others.

Well said I really agree
I've had my TBI since I was 9 but, wasn't eligible for disability until I was almost 22
This is a wonderful article, and the comments as well. My issues are not brain-related. I had bladder cancer, which led to a lot of complications that can be embarrassing and difficult. It took a lot of encouragement from good friends and family to begin to ask for help. Thanks for being a champion.
Very true words David. This hit home with me .... tears in my eyes. I too had to sell my Jeep (Liberty). I now have to walk or ask for rides. Thank you for this.
Your article brought tears to my eyes. I took a small flight a year after my accident. I was a mess. My sisters were celebrating my 40th. They had no idea the anxiety, pain or symptoms of PTSD I was having. I distinctively remember watching a man hold his dog very close as we sat in the airport waiting for out plane to arrive. I desperately wanted my dog. I had my itinerary, flight times, my husbands phone number on a clip board shoved in my purse. Instead of being able to hug and pet my best buddy, I clung to my clipboard and desperately blinked tears away. I didn't know how to ask or tell the flight staff of my disability. I didn't want to be an embarrassment or a burden. Your post has now given me the confidence to inform the flight staff when my family flies to Mexico. I may be able to travel with much less anxiety after all!

Exactly a year after surviving a head on collision, my sisters flew me to a small town to celebrate my birthday.  I did not want to disappoint them so I accepted their offer.  I never told them how difficult this was for me.  The thought of flying without my family, all of which were in the accident, was terrifying.  My flashbacks went into hyper mode and my anxiety was almost unbearable.  The only coping mechanism I could create was printing off each flight itinerary, the airport map, highlighting each pathway I needed to take to meet my sisters. I kept the phone number of my husband, mom, and sisters written down in case I got lost.  All of this was kept in a clear folder so I could see each page.  Each time, my anxiety rose, I would cling to my clipboard and try to memorize the information I needed for my next step.

As I waited for my plane, a man next to me was holding his dog exceptionally close.  I desperately wanted to reach out and pet the dog too.  I desperately wished for my dog.  Yet, I was unsure of how the man would react and I was too afraid to speak to anyone.  Looking back on the event and reading your article, admitting you have a disability, is not a bad thing.  If I had admitted I needed help, my disability would not have defined my traveling moment.  But in that case, my disability defined my every move.  Now, I will have more confidence and will not let my disability get in the way of social interaction, and enjoying the flight.  I will be letting the flight staff know as my family and I fly on our next journey.  But, I still want my dog to go too!

Sandra Williams

Your educational article will help a lot of people with various neurological challenges like ADHD, ADD, Hyperactivity (subtle attention difficulties) who may (falsely) believe that it's all due to a mysterious allergy vs sometimes closer to what you write about. Thank you for your very plain summary. Wonderful article.

I have a brain injury due to 2 ruptured aneurysms and a stroke.  This post really hit home for me.  I, too, was a world traveler before my brain injury for both business and pleasure.  I was also a travel agent for 20 years prior. The last 12 years prior to my new life i was a meeting manager also and traveled by myself almost monthly.  Now it scares me to think of traveling by myself.  What  you said about "I am 52 and also 3 1/2"  was totally true.  I never could get the words right but that is exactly how i feel too.  

I am 43 and also 3 1/2:)  It took me a while to say i was disabled and it still stings to say it.  I got home from the hospital last April and couldn't walk then - was still in a wheelchair.  Now a year later i am working on jogging in PT!  It has been a long road for sure. Did i mention that when this all happened to me, i had just had a baby and she was 4 weeks old:(  Thank God for my husband! I don't know if others feel like this, but I feel really creaky every morning when i wake up and if i don't work on it daily, it goes downhill fast.  Chasing after a toddler gets me going haha:)

i found and still do at times to openly say i'm disabled. your article really hit home i applaud you for your courage,,material things are nothing our health an well being is !!!! still struggling as all tbi survivors ill' never be the same me but ill' be the best me i can be. people shirk away from the disabled especially when they hear i have seizures the once ill' always be there disappeared to them stopping by maybe once a week was sad now i figure it's their loss an pray nothing happens to them. thank you again for sharing hey life goes on!!!
I've been reading through the comments you all have left so far... and I am the one left humbled by your courage. It's often quite frightening to put so much of myself "out there." Many of you have shared that my words have helped you. It works the other way as well. I feel so much less alone knowing that others share my fate. ~David A. Grant
I am currently sitting in the hospital bed next to my mother that suffered a severe brain injury. This all so new and SUPER scary. My friend knows the struggles I am already facing and sent this link to me. Thank you so much for sharing! Though many of you have different types of injuries, it all is very similar in many ways and provided me some much needed assistance. My very best to all of you and all prayers for momma are gladly accepted! :-)
It is an interesting article. May at first I may have said disable. Yet, short therefore - things that were funny. I was a cool shirt I purchase that say: I am a stroke survivor!. My talking is a bit weird (asphasia), so I may ask if they understood was I was saying. Folks are patient. I don't worry about how I am. Relearning and Learn as a part of my recovery. Thus, cool.
I am disabled , brings no relief to me . I gained a colostomy bag. I can't be a principal or even a teacher any more. I have Medicare and Medicate is not good for me. I lost my husband and my daughter over this . My son visits once a month . My daughter screams and hollers at me calling me a whore. I did nothing wrong, I was thirty-one years old. My school turned on me a Catholic School in Detroit. Why you tell me am I supposed to say I feel relief. I hate me. I can't even get proper medical help, because I was given three years work study that is it. I disagree with you and what you have written. Sincerely Gina Simard
Thank you for your article. 8 months after our 20 year old daughter's severe TBI. We decided to take a break from all the months of rehab. It was a trip to Florida to visit family and to the beach. A trip that we spoke many times, held out as a dream for the many months she still lay in a hospital bed. Erica still unable to walk independently and using a walker, had to negotiate getting on and off a plane and to our seats using just the seats to hold on as she walked slowly down the aisle ( a walker is too wide to fit down the aisle!) She was a trooper! We told all the crew of the TBI and they were wonderful making sure that a wheelchair was there when we boarded and deboarded. The Trip...well it was the best medicine Erica could have. It renewed her spirits but most of all it renewed her confidence to push ahead and work through the limitations that her TBI has left her with.

Thank you.  That you can express yourself so beautifully is so affirming.  Though I have difficulty with my brain and my spoken word working in concert, I can write?  Since my re-birth, each day is such a struggle, but when I look back over the last year, I see progress and I'm proud of me.  You see... I've done it on my own.  Until recently, I had no healthcare so no rehab. 

My most depressing moments are when my children do not acknowledge this injury though they have not been involved at all.  None of the medical evidence... the hours of testing I've been subjected to...the pain or tears....  Yes, I am disabled and when I received notification, I cried.  I ache still to have my "old life" back...not as much as I gradually move forward into this "new me", but all the same....  No, my daughters, this is not the life I choose to live... why is it you would believe anyone would?

I had my severe TBI thirty years ago and even though I admit I am disabled, other people will not admit it. I received my second degree in college in special ed, and yet sometimes these were the roughest people to me even though they were aware of the effects of a TBI. I may look and speak normally for a few minutes, but soon you will be confused when I repeat myself or forget what you said. It is such a hidden disability. You can sometimes see my weak left side, but it sometimes hard to understand my TBI.
My T.B.I. happened 30 years ago.I was in coma for 2 weeks..Was tough on me as we all have different struggles.The memory or lack of concentration is frustrating to say the least.I developed vertigo an have lime disease an list of problems.But I try to push myself a little more everyday.It makes me stronger knowing that I'm not alone. I've learned just because you can't see a disability doesn't mean you don't have one. Thank you all - you make me feel not alone.