Developing Effective Adaptive Strategies After Brain Injury

Developing Effective Adaptive Strategies After Brain Injury

Over the years, more than a few people have said that I ought to give serious thought to a career as a photographer. While I am flattered by the kind words, I’ll never even consider it. But the reason for this might just surprise you.

While I have partially recovered from my 2010 cycling crash, there are still so many lingering challenges that I face as someone with a brain injury. My “visible” injuries have healed as they should have. My bones mended, my bruises faded, my lacerations healed.

Luckily, there are no lingering physical challenges whatsoever. In fact, if I were to hand to a physician unfamiliar with my history, I would emerge with flying colors, a specimen of fine health. This, of course, provided that I never said the three words that have forever changed me: traumatic brain injury.

Rather, it is my “invisible” injury that stubbornly won't let go. As time passes and I learn more about the medical aspects of being a someone with a brain injury, I realize that I really am simply a typical TBI survivor. Yes, every brain injury is different, but there seem to be some common threads, some shared traits that we, as survivors, have come to live with.

I tire more easily than I used to. In my case, it’s a metal fatigue that can wear me down in ways unlike anything I ever dealt with in my life “before.” My emotions are closer to the surface than ever as well. If you live with brain injury, you most likely understand that feeling.

But of all the challenges I now face, my compromised memory is, without question, the biggest challenge of this new post-TBI life. I’m not talking about the “where did I leave my keys?” type of occasional challenge that most everyone faces. If it were just that, life would be so much easier.

There are days now that my memory fails close to 100 percent of the time. Events that passed a month ago, feel like last week. Occasionally, I’ll reference something in conversation with my wife, Sarah, thinking that it was a relatively recent occurrence — only to be told that I was talking about an event from a year ago — or even longer.

It’s hard on me as it rocks my confidence and self-esteem. It’s even harder on those closest to me as it’s an “in your face” reminder that I am not as well as I look.

But like so many other challenges I face post-injury, all is not lost. Not even close.

And so we circle back to my incessant picture taking.

After a year or so as a brain injury survivor, I went through extensive neuropsychological testing. Said a trusted neuropsychologist, “move as much of your mental processing to outside your brain as possible.”

My cloud-based calendar helps keep my day-to-day schedule in order. And my picture taking helps me to find order in a past that would otherwise be jumbled and meaningless. At least once a week, I transfer images from my calendar to my external flash drive. These “digital memories” are sorted in folders based on dates.

These tools serve as my bionic memory. I can easily go back digitally through time and see what happened last week, last month, and even last year. All the guesswork is gone. Most of the frustration is gone. Sure, there can be an extra step in recalling events that have come to pass, but it’s so worth it.

And realistically, what other options do I really have? I can continue to experience frustration. That is always an option. However, I chose to listen to my doctor — to try something that is perhaps a bit non-mainstream.

But in the final analysis, it works. And isn't that all that really matters?

Comments (13)

You have no idea as to how much you have helped my husband and I. We live in Mexico where support groups don't exist. My husband had his accident 6 yrs ago. Our life has been one hell of a ride to say the least since then. We just take it day to day. due to his injury he also gets epileptic attacks every so often. We are just happy to have him around. Koodles to your writing

I think as survivors we really learn to compensate as we reengage in life. At times I forget about my challenges, then something will throw me completely off and remind me. I forget now becasue I have gotten used to my new normal. Ive finally gotten to a place where I can stop and instead of being thrown into a spiral I remember what happened, who I am and how far I have come. It took many years to get here, but all of the joy now is not what I thought was going to happen during those years of hell. Its a slow process. I love your writing because it shows that we struggle, but we go on.

Thank you for sharing, I suffer from the same problem, my TBI was 5 years ago. I take a lot of photos, put them in files by date and transfer them to a flash drive. Forgetting events. Places, word finding and comprehension make me feel less of a person.

Nice article,  Living with a TBI..gets a little easier as the years go forward.  There are still those challenges.  It's good to be able to see other people out there making it work! It's not great that we have to endure head injuries that are not visible. The people who spend the most time with you pick up on it. . . They know you need that extra nap. Being able to say, yep.. I've experienced that.. makes it just a little easier to deal with it. 

You've got it bang on. For those in Ottawa, ON, Canada; the Rehab centre has a course called CogSmart to help those of us with TBI to get a semblance of life back - get referred or find out if something similar is taking place in your area. Sincerely thanks for this blog.

Thank you David. It is indeed a great way to relieve the frustration of not remembering events. My husband is one week short of 10 months post TBI. He was attacked violently while out for a walk (Police have never found who was responsible). He has a severe TBI (bi-lateral damage), no physical issues at all now). He underwent a six hour op and remained in a medically induced coma for 22 days. His overall stay in hospital was 5 months and now he is an out- patient. His Neurologist says that if one were to look at his MRI they would never associate it with Nicolas. His MRI says he should not have survived. He has defied everyone to make a remarkable recovery (and it's still early days). Of course there have been some really difficult moments but as you know they fade into the distant memory when so much progress is being made. He works as a web designer and maintains that his rehab has helped him break down his job and reconstruct everything in a new and even more organised manner that is fool proof; he can't forget with this new system. Without his Neuropsychologist he would never have reached this point so soon and for us having this specialist therapy has changed so many aspects of his recovery. I would urge all survivors who have not yet sought or been given this treatment, to arrange it asap. We live in the south of Spain and when this happened I discovered there are no facilities for people who have suffered brain damage here. My Husband was discharged from hospital a week after coming out of the ICU, he couldn't even walk. I was expected to take care of him at home, his family spent a week with us in Spain but left before he came out of the coma. I had to learn the hard way but I did it. After a week at home and unable to cope because as those of you will testify; we are never prepared for this I transferred him to a University hospital in the north of Spain where I was lucky enough to find the best team of Doctors anyone could wish to find. He came back to life there and I can only thank God and the internet for my discovery. Sorry to ramble. Regards to everyone caring and surviving, Sophie x

David you inspire me and you tell how it really is, no sugar coating~ you tell it how it is! It makes me see how it is and being a mom of a Tbi survivor of a young boy I don't always understand ! Thanks for always sharing and being who you are today. You have a purpose so don't ever give up. You have came a log way.

thank you so much for sharing this its so true i get so frustrated with myself at times but its always good to hear someone elses strategies to help with this

They talked about my seeing a neurophyscologist too but it never happened. Maybe I should remind them, if I can remember! Thank you for sharing your story.

I kept thinking about what you wrote today and I read for the first time something that is one of the most bothersome consequences I live with. You said, "Events that passed a month ago, feel like last week.... thinking that it was a relatively recent occurrence — only to be told that I was talking about an event from a year ago — or even longer." I often think I am imagining things confusing events combining them to try to make sense of the order of what, when, who, and how. Your admission of the long-term effect of this constant struggle undermining your self-concept and self-esteem which seems all too familiar. I feel your pain.

Andi

So true, thanks for sharing David.  peace

As a survivor of 17.5 years, I too am plagued by those common threads. As you said that, "every brain injury is different," so are we as individuals. Everything that makes us who we are provides that individuality. How well we cope and recover are determined by as many factors as the consequences we live with. You are "paying it forward," by writing as you have done, educating the non-brain injured community and providing survivors an accommodatiin/strategy that you have created for yourself. Hopefully, survivors will use your experience to find ways to accommodate for themselves. Peace brother, Andi

Keep sharing David! I continue to learn and take interest although my battle of dating a TBI victim has ended. Ej