Defying Expectations after Traumatic Brain Injury

Defying Expectations after Traumatic Brain Injury

"It would be a good idea if you looked into getting a handicapped tag for your car," said the well-respected neuropsychologist in front of me. His voice had just a tinge of pity.

This statement was the second in a one-two punch that left me, and my wife, Sarah, feeling sucker punched.

"David, your ability to learn any new task was wiped out in your accident," the good doctor had just shared. "You will have an easier life by not trying anything new. Stick with what's familiar from now on."

It was early in 2012, and I had just completed hours of neuropsychological testing. As memory challenges were especially troublesome for me at this time, I had asked Sarah to accompany me to my final appointment. I knew it would be wise to have a second set of ears – and a fully functioning brain – in attendance.

My neuropsychological evaluation was just after the one-year anniversary of my accident. Just over a year prior, a sixteen-year-old driver struck me while I was out on my bike. As his auto insurance company denied any and all claims, we flew solo after my brain injury, amassing tens of thousands of dollars in medical debt. Neuropsychological testing is not cheap, but we deemed it to be money well spent.

It was my choice to go in for testing as I was on a fact-finding mission. I felt it was important to know where I stood. By better understanding where my deficiencies were, I would be better able to work on them. Recovery from a traumatic brain injury is not a spectator sport. From the get-go, I have pushed myself harder than most anyone will ever know, except my wife, Sarah.

The testing took place over two or three days. I left every day more exhausted than I ever thought possible. But it was important to me.

The numbers were frightening. I rated in the bottom 5% for verbal recall. That alone explained why I was unable to follow movie plotlines over the last few months as Sarah and I continued our tradition of dinner and a movie on Thursday nights.

In the "complex problem solving" category, I also ranked in the bottom 5% of my class. I now understood why tying my shoes took a lot longer.

We sat there, the three of us, the Doctor, Sarah, and I, letting the news sink in.

Those who know me best, know that I am a consummate overachiever. Tell me I can't do something and I'll do all I can to prove you wrong. As my mind struggled to understand the sweeping consequences of this news, I asked what I thought to be a logical question.

“Can I set up an appointment a year from now so that we can measure my progress?” I asked still looking for a light at the end of the tunnel.

His parting shot filled my eyes with tears. “There is no need to. If you have any further gains, they will be inconsequential at best.”

Have a good day.

Suffice it to say, the ride home was quiet. Brain injury is a family affair. Not only was my world rocked to the core, so was my wife’s. We were still relative newlyweds, a year prior I was a very successful businessman, and we had a lifetime of hopes and dreams ahead of us.

Over the last few years, I have seen a dramatic shift in how the medical community perceives brain injury recovery. The “old-school” says that most recovery does indeed happen in the first year. But that type of old-school thinking is slowly being replaced by an emerging body of scientific evidence that shows that recovery can and does go on for many, many years.

Over the weeks following my testing, as the emotional dust settled, we made what some may deem to be a decision that seems contrary to what was suggested. One night, in that quiet time in bed before lights out, Sarah and I marked the calendar with a list of new things to do. Together, we made the decision to venture out into unfamiliar territory at least once a month. We made the decision to embrace, rather than avoid, new things.

And since early 2012, we’ve never looked back. To share all of our life’s new adventures would fill a book. Since my diagnosis, I’ve continued to move forward with my written work, and have had pieces published internationally. My most recent book was released in early 2015, a living testament to what can happen if you don’t give up. I also started a new business just this year, one that supports emerging writers looking to have their work published. The list goes on.

We’ve done lots of exploring in new places as well. From exploring the quiet streets of Key West and New Orleans to hiking the wilderness in Yellowstone, we’ve seen and done more in the last few years than most would ever expect.

So now I’ve come full-circle to the good doc who told me to hang a “Closed for Business” sign over my life. I hold no animosity as he was doing the best he could with old-school information. Thankfully, today’s world is chock full of professionals who are compassionate and truly understand that recovery is indeed lifelong, and that even years later, measurable gains can and do come to pass.

If you – or someone you love – have been told that the window of recovery is now closed, I implore you to see it for what it is: a snapshot at a single moment in time.

Me? I prefer to think that we live in an age of miracles. Just look around you! 

Comments (13)

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I just wanted to try to help the person who asked about biking and swimming. I'm not a doctor, just a patient, so this is "not medical advice,"  just another patient's experience.  The biggest issues I have to work around on a bike are avoiding visual movement, balance challenges, over exertion and rapid decision-making and responding (like stopping suddenly.)   I have found success in biking by choosing a trail that is easy for me, taking it at a slow pace, and sticking to a short distance.  For me, easy means an uncrowded, smooth, shaded, paved off-road trail, with very few intersections and limited visual or balance challenges (like railings with slats, S curves on hills, or slippery patches).  I usually bike on a weekday mid-day, to avoid the frantic commuters and the weekend crowds.  I ride defensively, so if there is a pedestrian I call out "passing on your left" and I go at a snail's pace if there are any children or dogs around.  I find resting is important as a prevention to building up symptoms.  Pacing myself is extremely important, I ride slowly and I sometimes rest in my car after riding a bike.  I find driving a car more difficult than riding a bike, probably because I can't avoid seeing the fast moving traffic approaching me and crossing at intersections.  I also do swim a little bit, and again, I swim at off-peak times to avoid crowds and their noise and visual challenge, I swim slowly, and I try to keep my neck relaxed because I think neck tension can contribute to nerve aggravation.  To keep my neck relaxed, I try not to lift my head so high when I breathe, and I keep my shoulders down and try to pull from my core when I stroke, instead of from my neck.  I hope some of this is helpful to someone else, and wish you all success in your recoveries!

Thanks David I am a little over 4 years out from my event and TBI I was hit by a truck cycling for a triathlon I intended to do the next day. It was the Patriot Triathlon in Mass June 2011. My accident happened June 16th 2011. I have probably experienced all of what you have written about including suicidal thoughts almost everyday for 4 months after I was diagnosed. I lost a good job, my house, my insurance walked away and luckily I had family around to save me and keep me from drowning in the beaurocracy that is overwhelming for someone without a brain injury nevermind someone with on and youre expected to know how to complete these forms etc. The short version is I never quit so I got back on my bike, swam again and started running again and doing what I love Triathlon. This year I started a business with my wife and we imported a line of 7 bars called Raw Bite from Denmark. Changing my eating to organic foods and no more chemicals and pasticides in products not only helped my body it helps my brain function everyday. Exercise also helps the blood flow reconnecting the brain in ways I could never imagine. I highly recommend it on a reguar basis. I love life most days again and I do have otugh days too but I know they will pass and I try not to hit the ceiling or the walls in my my friend and live so hard until you love it again.  Never ever give up. Kind Regards Kevin 

I love reading this. Because I know that you are the only ones who can determine what your recovery will be.if you think about it does doctors have no experience with head injury or TBI. Doctors only know what they learn from books and things and salesmen who come in to their offices. we are the ones who know how the head feels from the inside out. My TBI was in 78. I was left with very little of mental functioning. it took me years to be able to follow the plot line in TV shows. Mash was the only thing I could watch for years. I was happy watching reruns because I couldn't remember that I had seen it before. All that to say that retraining the brain is an arduous process that must be continued on a moment by moment basis. everything this done for years must be used as therapy. My book is on Amazon. "I didn't die because God wasn't finished with me yet". By Dr. Mary Adkins. It has some helps for the caregiver guys just keep on movin keep on truckin movement is life.

I'm a summer student working at a brain injury association. Thank you for your dedication and hard work in writing this blog, David. It's helped me better understand the people I work with, and I've actually used some of your articles in our weekly reading groups. As a future clinical psychologist, I will be doing my job with a strong background in brain injury, and I hope to avoid the sort of pessimistic thinking on display here. Keep being inspirational, I will follow your story long after my summer job is over.

A great article! my husband had his aneuysm in 2010. We had six monthly appointments with his neurosurgeon. I have since realised that these appointments were purely for the doctors statistic gathering.

On his second visit, a year out this doctor just said "well, its as I predicted, theres been no gains at all"

Your story is so similar. My husband had his own crane driving business so staying at home annoys him. We also try and get out and about and maintain friendships. We live in Australia had have travelled so far to two other states and in september we will be going to france for three weeks. Onwards and upwards!

This was before he even spoke to Craig and was addressed to me, like Craig was invisible. Craig has aphasia and uses a wheelchair but was completely back mentally.. He was so angry as was I. So we have declined all subsequent appointments.

In five years, he is recovering his speech and can walk short distances. We are moving forward using like minded physios, speech therapists and doctors.

It would be great to hear about how your bicycling has been affected by your TBI. I have radically scaled back my bicycling because I am particularly challenged by light and sound sensitivity. I need days rather than hours to recover from the stress of interval and hill work. My neuro-physiatrist took me off all meds and told me to become an athlete again, but the challenges are so different now. I used to swim competitively (something I don't need to learn), but now I gauge each workout to how long I think it will take me to recover. I don't leave tired, but usually just as the pain in my head is increasing. I don't really have any performance expectations or objectives; I give myself points for showing up for practice. How do you set performance objectives when your likely to fall short?

BRAVO! Thank you for connecting. We are the media now. Brain injury survivors seem to know much more than such doctors who can only test based on outdated information, collect huge fees for opining and destroying hope and lives with condescending ignorance. "DO NO HARM" seems to mean so little these days. Our chances for survival and development of compensatory strategies for dealing with brain injuries seem greater and faster if we avoid the suits and the white jackets. The old adage, "Follow the money. Always follow the money." would seem to apply. Day by Day, in many ways, we get better and better! Cheers to you! Thank you for sharing your experience strength and hope!

I could not agree more!  A very inspirational piece and so very true. In June 2014 I nearly died when, after just leaving work in my 3/4 ton Dodge truck, a tanker hauling semi driver blew a red light and ran over my cab doing 65 mph.  I suffered:  broken bones (approximately 1/2 the bones in my body), a deflated lung, a splenectomy, lacerations over my face and left side, a spiral/compound fracture of my right ankle, and a DAI (Diffuse Axonal Injury).  I still have trouble walking and still see double but that will get better.  With faith and determination I can only improve, God and I have defied most of the medical community thus far. -Dave

You are always a source of inspiration, motivation, and reflection.  Thanks for sharing! 

Dave - you explained it so well - the brain is a unlimited computer . I may never be the old me ( whoever that was) but the brain can rewire & does . Why for some &I not others , I'm not sure As someone wise ( & also a tbi survivor) told me " there is always a way around the mountain " ... I may not do things the same way but I do them . And I have more that I want to accomplish & I will get there I have a life time to achieve it

David, I've written about this before, in varying forms...what happened to you is not something to decry. It is to be looked at as an opportunity. The perspective is just right...for you now have the chance to rebuild your life as you see fit. A life again is an interesting assignment that few ever are extended the chance. It isn't easy, but then again, it isn't hard. Effort is all that is required an it sounds like your goblet runneth over in that category.

An experience sadly shared by so many. But, the brain is amazing and it's neuroplasticity holds some hope.

While I do believe doctors mean well at times, they do not have all the answers. I have heard those words myself (previously). I not only went back to school, I went so far as to complete a post doctoral degree at a prestigous university. Don't ever give up. I support your determination & dedication. Good support systems are also invaluable. A quote that has always helped me: "it is amazing what one can accomplish when one doesn't know what one 'can't ' do." Go for it and never give up! Best wishes, SM