Shattering the One Year Myth

Shattering the One Year Myth

With the five-year anniversary of my traumatic brain injury on the horizon, I have gained one thing that I was not capable of having early on—I have gained a perspective that comes with time.

Like so many others who share my fate, I get a bit reflective every year around TBI anniversary time. It’s a bit of a “take stock” time for me as I look at where I am today – compared to where I was. I now allow myself to look to the future with hope, a realistic hope that I will continue to heal.

But there was a day that someone stole my hope and left me completely and utterly devastated.

I’m a big fan of taking personal inventory. A year after I was struck down by a teenaged driver while I was cycling, I decided it was time. I had heard a lot about neuropsychological testing. It was time to see how many of my marbles remained. I wanted a clearer understanding of my deficits so that I could have a starting point, a place to begin the next chapter of my healing.

After hours of grueling testing that took place over the course of several days, I sat down with my wife, Sarah, and the neuropsychologist. As we reviewed the results of my test, it was clear that my assessment was not quite what we expected.

“David, you are in the bottom five percentile in the areas of complex problem solving and verbal recall,” he said as dryly as if giving driving directions to a stranger. This fact alone was shocking enough. But there were more sucker punches to my soul awaiting.

“You are permanently disabled, and any gains you have from here on out will be small at best,” he shared, as my wife and I sat there trying to comprehend the gravity of his diagnosis.

Still keeping a stiff upper lip, I asked about scheduling a neuropsychological test a year out, suggesting that we could use this first test as a benchmark to measure future gains.

“There is no need, your gains will be insignificant at best,” came the authoritative answer.

As our visit wound down, there was a final hope-stealing shot across my bow.

 “Most brain injury survivors see an IQ drop after their injuries. It’s clear that you were a very intelligent man before your accident. Even losing some of your IQ, you should be able to get by relatively okay now,” he propounded, as we were getting ready to leave his office.

Many years have passed since that meeting. Swimming in a sea with other survivors over the years, I have heard this same misinformation shared over and over again – after a year, you are as good as you are going to get. Please check your HOPE at the door. No need for optimism.  Go directly to TBI jail, do not pass Go, do not collect $200. Hunker down and just grin and bear it. You are lucky enough just to be alive.

Balderdash!

As time continues to pass, I now recognize this kind of advice for what it is: old-school science. The old-school TBI science was simple and easy. After a year, any gains would be small. Thankfully, a new school of science is now dominating the national brain injury narrative. New school science embraces neuroplasticity and challenges the archaic belief that recovery has an end game. New school science embraces the hidden power of the brain and human body. New school science says that as long as you have a heartbeat, you will continue to heal. And best of all, new school science is a science of hope - hope that the way things are today are not how they will be next year, or in five years.

One of the first to push old school science to the side was Dr. Jill Bolte-Taylor. In her book, My Stroke of Insight, she speaks of measurable gains through the eight-year mark. Last year at this time, I attended a conference in Maine. The keynote presenter, who is also a doctor and the parent of a survivor, took to the podium in front of her peers and continued this new narrative.

“As a medical community, we got it wrong when we told you that recovery was over in a year. We got it wrong,” she shared. You could have heard a pin drop.

I hold no ill will, anger or resentment to the well-intentioned doctor who temporarily stole my hope. He was only preaching what his old-school science had taught him. As the tide continues to turn, more and more members of the medical and professional community are letting go of the one-year myth. The Dark Ages of brain injury recovery are slowly fading into the past.

I need only look at my own life to see some of the long-term gains.

At two years out, my vertigo almost ceased. At three years out, I was again able to work beyond 2:00 PM every day. At four years out, I was able to read books again – something I thought I had lost forever. The list goes on.

Today I have real hope – hope that I will continue my path toward recovery. Not “whistling in the dark” hope, this is true hope based on my life experience as well as emerging science. I don’t kid myself for a moment because I know I’ll never be who I was.

But today, where I am going is so much more important than where I was.

Comments (12)

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.

I suffered a TBI roughly 8 months ago from a snowboarding accident.  I don't remember the accident or hospital. My recollection begins during inpt rehab which lasted almost 4 months!  Fortunately (or unfortunately), I remember everything pre-accident. I was a world class athlete who competed all over the world. My deficits now are all physical (double vision, speech problems, and right sided weakness...I use a cane). I can't wait to (hopefully) bike and run again. Your blog gives me hope. The only thing(s) that kept me going were my supportive wife and my 15yo daughter. They have been a tremendous help and inspiration.   Sometimes it can be very frustrating.  Thanks for the hope. I guess I will learn some patience!

This was what I needed today!!! Thank you so much. My 54 year old little sister is not even two weeks out from a TBI and still isn't home from hospitalization. The internet can be a source of some pretty depressing information but your article and comments by other have given me great hope for her recovery!!!

Thank you for this! My son is two years out and has made amazing strides! It's great to know his recovery will continue!! We were told after 1-2 years, his improvement would taper off. Thanks for the positive reinforcement! And good luck to you!

Thank you for sharing. There is always progress to be made with TBI. You have to find the right help, like the Shepherd Center in Atlanta and Carrigg Brain Center in Dallas. You have to work at it, do brain games, read at younger levels until you regain. You can retrain your brain no matter how much time has passed. Never Quit!

Such good news to hear. We had a similar experience, leaving my grandson thinking his life was over. Hopefully the healing can now begin again.

Thank you so much for this blog. We will be following from now on!  I shared it on our blog, also!

Keep moving forward, always!!
http://www.hawkinssmallrevelations.com/#!Shattering-the-one-year-myth/c218b/5613b0490cf2a7bb74c96f64

I am just finishing a rewrite on my Memoir called THE FALL. I discuss the same medical crap that could side line a weaker survivor. My anniversary of my TBI was September 21st. It has been nineteen years and I am still improving... But you can't stop pushing yourself to regain and retrain, EVER.

I just want to say thank you for telling your story. Unfortunately my father was a VICTIM of a motorcycle accident. As his daughter I refuse to have nothing but hope and refuse to be anything less than positive. Your story is so touching and I want you to know I think you are a very kind and strong individual. Everyone is different and I truly believe deep down inside my heart my dad is the strongest and most determined man I have ever known. He is our rock. Life is precious and can change in just seconds. I am blessed to still have him with us and I believe he will beat this. Thank you again for sharing your touching story, stay strong and positive. God bless you!

THANK YOU!!! It is so refreshing to hear so many stories of recovery long after the "one year" mark!!!

Thank you for writing this insightful article. You have described my journey exactly! I am 10 years post brain injury due to encephalitis. At two years I was told there was no hope and I was as good as I would be and today I still see improvement as time passes. Like you, I will never be the same but I excited and hopeful about the future because I believe I am only going to continue to get better! I hope your message reaches all of those who have recently suffered a brain injury. There is hope and we are living proof!

David, Excellent article! I've been pushing the agenda of LifeLong Living for 30+ years b/c of my experiences that "people don't plateau, environments do". I was taught the exact same thing in grad school in the early 80's of the 1-year "window of opportunity", which never made any sense to me. Since then, I've worked with many individuals 25-30 years post TBI whose lives continue to grow and develop as they have new life experiences, with both ups and downs, just like all of us. Well intentioned professionals inadvertently set a glass ceiling with their prognostications, and are often not around to readjust their viewpoints when those expectations are surpassed. If they were, I think they'd realize their crystal ball may be blurry. Keep on truckin...

David Seaton. DS@LiveOakLiving.com

Love how the medical community has opinions about something they know so little about...I didn't believe for myself I would be pretty fully recovered almost 11 years later...but, here I am...none of their 'predictions' have come to pass - I married someone I met 4 years ago - we are very happy, we bought a home a couple years ago...I work full time (and then some)...so, don't let those who 'know' tell you how things will be...