Life After Brain Injury: I Have a Secret

Life After Brain Injury: I Have a Secret

I have a secret: not all is as it appears.

Most anyone living with a traumatic brain injury already knows this. All someone has to do is tell you that you “look normal.” At this point, you will either want to bop that person on the head, or you’ll simply shake your own and think that he just doesn't get it.

But I get it. I get it because I live in the new “frontier land” that is life with a brain injury.

Since I still cycle 25 miles a day, even after my brain injury, I know most all of the neighborhood regulars by sight. I have given most of them odd-ball nicknames like “Dog Walking Lady” and “The Power Walking Couple.” About a year after my brain injury, I noticed a new walker walking in my neighborhood. He appeared with a cane. And with his wife, ever present by his side. They were a new addition to our landscape of regulars. And the more my wife, Sarah, and I saw this man walking, the more we noticed that the man's pace was increasing and his was stability improving. “I bet he had a brain injury,” Sarah prophesied.

One day, I found myself stopped at a corner on my bike as the man and his wife walked by. “You are doing so well. It’s GREAT to see the progress you've made,” I said, marveling once again at the freedom that can come with the disinhibition of brain injury.

My words brought huge smiles to the man and his wife. Introductions were shared, though his name, like so many others, is forever lost to me. From there, the conversation flowed like water.

It turns out my wife was right. He had fallen the year after my TBI and joined our exclusive brain injury club — the club no one wants to join. Brain injury is indeed the last thing you ever think about until it’s the only thing you think about.

“The doctors said I would never get any better, but I decided not to listen to them,” he chuckled. I listened intently to his story then I dropped my own verbal bomb. “My brain injury was a year before yours and like you, my own doctor said I was permanently disabled and not to expect much. As you can see, I didn't listen either!”

We shared a hale and hearty laugh and went on our respective ways.

And there was my secret again: not all is as it appears.

Think about it.

That man fumbling with his wallet in front of you at the checkout counter no longer causes impatience. He might be someone affected by traumatic brain injury

That driver cruising along at 10 mph under the posted speed limit no longer makes you tap my foot. She might be one of the 3.5 million people affected by brain injury this year.

The person at the supermarket with his cart parked dead center in the aisle as he stares at all the soups … well, you know where I am going with this. We are everywhere.

My brain injury continues to teach me a level of patience, understanding, and compassion I never had before my accident.

My hope is that with more awareness about brain injury, people will remember that we are here — alive, everywhere, moving forward step by step, moment by moment, effort by effort — no matter how “normal” we look.

Comments (15)

This honestly explains so much and opens the world. I wish those living without a tbi could understand what our lives are like. How easy it is for us to forget and how difficult it is for us to keep concentration. We aren’t dumb and we aren’t different. My tbi took place April of 2012 months before my 18th birthday at the hands of a drunk driver. I’ve made progress but I still have my cloudy days. I’m thankful just to still be able to wake up everyday.

My own TBI was 5 years ago. I know I have deficits, everyone else thinks I am fine. My "problems" are in the frontal lobe and my balance is still so bad that I can't ride a bike, but, there are so many, many more things I can do that I shouldn't have been able to do. My surgeon did not think I would live. My family was told that my injury was too great. Thank God the my life was not just in the Neurosurgeon's hands, but also in the hands of my Maker. It has been a long strange journey, I applaud you for your article. I pray that it will make everyone think twice when they see US in the public.
Well said, David! Yes, all is not as it seems - I could say that several times a day, because I look and sound so good. Sometimes, I just need to go to my cocoon or home to get away from the stimulation of the world, so I can relax and center myself. Nice work getting the word out that "not is all as it seems" with a TBIer!

I truly believe that when medical procedures have been exhausted before our time is up miracles will happen, fueled by pure essence.  While deficits will appear we are able to see they are just an illusion.

Making peace with what is no more and finding love for what is will open your world to serenity.

Great article David, thanks for the perspective.

My injury was on February 19, 2013 due to a snowboarding accident and I was not supposed to make it. I had the same thought when someone was upset about the way a person was doing something, my response to them was would feel the same way if that was me, please be aware that that person might have a tbi. That changed how that person felt tremendously and permanently. I would have been in the same shoes as that person who was upset but now because of my tbi I think and feel differently about those situations. Now I have to say I would not have said this before but I was near a hospital room to a person who was struggling with the same issue as me and he was fighting therapists and you can tell the major differences between his and my recovery, now what upsets me more than that person who slowly walks across the street rather than hurrying to the other side is that person who thinks that they don't have to do anything or fight the people who are trying to help because they feel all will work out eventually. Not true, all I gotta say to that is now is the time when you should be working as hard as you can to help with the recovery.
I find myself sitting here and nodding my head in agreement at what you have written. Life is definitely never the same after a brain injury. I still want to bop people when they look at me and say I look fine and I was so lucky!! Lucky to be alive - yes, though on bad days I struggle to keep reminding myself of this. Not so lucky to have to live with a brain injury.
My own mild tbi, aka concussion, was just over five years ago, I've noticed slight differences and I know, I'm not like I used to be, nobody else notices, but my patience level fluctuates more now, I have more negativity and frustration, I'm working on it though.
"You look the same, you must be all better" That phrase used to drive me nuts. I would just shake my head and keep track of how many times that was said to me (I stopped counting at 14, I kept forgetting what number I was on hehehe) I was in a dirt bike accident February 17, 2013 that put me into a coma for 2 weeks. I have lost a lot in the accident, but have gained so much more. Everyday is a fight for me, but I can still laugh and smile and that is all that matters!!! Keeping a good attitude. I have a degree in Ecotourism and Adventure Travel, and I have a plan. So Alive. An organization for us to end the fight and unite. There are a lot of support groups for a Tbi, but no organization for us to get out and explore. Softball, Kayaking, Canoeing, Ziplining, Hiking, Camping, Frisbee Golf, and Rock Climbing. Things to get us out of our bubble and state of mind. To push our buttons and realize that we can still do these activities. I can still remember 3 months ago, my first time trying to hit a tennis ball with a bat, and I did it! I was so excited and happy. Therapists told me I wouldn't be able to do such things and I still could do it! I want to share that feeling with all of you. Please let me know if you are interested in "So Alive". There is a facebook page....search So Alive! Every is a blessing
Every time someone says that "you look fine" I restart the mental debate of whether or not to shave my head so they can see the 4" scar (or horcrux as my mom dubbed it) that I got from cracking my head open in a car accident. I feel like there needs to be a secret handshake or tattoo for TBI victims so we can "show" the world our injury.
i'm still recovering from my TBI on april 22, 2013. i was the corporate sponsor at a charity golf tournament. the cover to leader board wasn't attached, simply propped back. i was standing underneath when a big wind blew it over slamming into the left side of my face and brain. I'm also a stage 3A breast cancer survivor of three years. I had just gotten my life back from cancer when the TBI occurred. I'm now struggling with defining the new me. My doc says my brain is still in the fight or flight mode from cancer and with the TBI, it is scared and wound up. She recommending some specialized yoga to start and will be on three meds for the fore-seeable future. I find myself turning inward and really don't care if i see another person. My whole career has been in public relations and now i just want to hide everyday. Cancer was easier to conquer than this TBI. I would go through treatment all over again compared to this brain injury.
I was in a horseback riding accident just over 3 months ago. A dog attacked the horse I was riding and the term "Run for cover" took affect. My horse ran for the trees and I got knocked off by a branch, suffered a fracture above my left eye. Anyway, I fell off and hit my head on a rock. I suffered a fracture, my sagitarial suture got knocked open and I had a epideral hematoma. I was in the hospital for about 7 days before I was released. The doctors say everything is healing and I am on the road to recovery.I still get dizzy especially when laying down, and I get really bad migraines. I have no sense of taste or smell.
Thanks for this, David. After I spoke to her class, a grad student asked me an entirely new question: "Has anything gotten better since your injury?" I had to think a minute but my answer made me add a slide to subsequent presentations. It is a picture of a homeless man in rags sleeping on a bench in Central Park. I told her that when see such people now I say a prayer, always ending with "and there but for the grace of God go I." Statistically, many homeless are suffering the consequences of their brain injury. Family & friends slip away, and we are more alone than we ever thought we would be. But many of us now have thriving, even vibrant prayer lives. God saves our tears in a bottle. And none of this suffering is wasted.
My TBI was in 1989 when I was only 20 years old. I had a depressed skull fracture and severe concussion, broken nose, lots of facial lacerations, and 2 fractured vertebrae from being a passenger in a 55 mph collision with a flat-bed semi. My seat and myself went through the windshield and my head into the side of flat bed. The paramedics later told me I had been minutes from death if they hadn't got there to stop the bleeding when they did. I don't remember any of the accident or the week and much of the year before it. I had seizures for about a year and a half, I lost a lot of prior memories, woke up after an emergency surgery, neurosurgery and plastic surgery, and had to relearn a lot, including how to deal with the "new me". My brain didn't work the way I expected it to and it still doesn't. I was told I'd probably never be able to work a normal job again. I have terrible short term memory issues that I've had to learn to work around, and tics that I work very hard to hide from undeserving eyes. But I have to tell you, many years and struggles later, things are a lot better. I refused to give up on myself and I live a pretty normal life now. In fact, many of my friends now don't even know what happened to me or what I still deal with. I have trusted that information only to a few very close friends and of course, my family. Things will never be the same, and many people can't see our hidden injuries and will say ignorant an hurtful things to us, but every day is a new day to forgive them, forgive yourself, and push forward. TBI never goes away, but you can learn to live with the new you, and even overcome many of the daily problems you deal with now if you just have patience with yourselves, have a trusted support system (my family is mine) and keep a positive attitude every day. One of the most beautiful things that my TBI has done for me was to teach me that nothing is promised to us; every day, every second of it, is a gift. Life is short and fragile. Choose to be happy despite adversity. Seek to better ourselves and the world around us. Peace and love to you all!
My t.b.i. was on Oct. 11,2013 as I have read here that's so true. I'm so glad everyone is doing well! The hardest thing I have to do is slow down and relax just so people can hear or understand me. My family lives out of state although I thank the high and mighty everyday for my wife. All I want to say to everyone is keep up the work, like my dad said to me this would be the hardest job I will every have and he was right! But it's not the hardest job I ever had it's the hardest thing I will ever do.
I suffered from a severe head trauma at the age of 18. It's been an interesting time. I can't remember yesterday. I just remember today. So that's all I have to work with.