Life After Brain Injury – A Five Year Lookback

David Grant and his wife smiling in sunglasses

Long before my traumatic brain injury, I developed the habit of occasionally looking back over my life. I used five years as a yardstick to measure my progress. Someone wiser than me once said that if I am dealing with the same challenges today as I was five years ago, it might be a good time to reevaluate my life. Fortunately, for many years, as I continued to grow into my “humanness,” looking back over five years, more often than not, showed me that I was indeed continuing to grow as a person.

Recently, I had the opportunity to apply this same practice to my life as a brain injury survivor. I am delighted to say that I really liked what I saw.

Last week was a traditional Monday through Friday workweek. I am rather big on routines, a compensatory strategy that has served me well since my 2010 injury. One afternoon was a bit busier than the rest, as I had a 1:00 PM conference call, followed by a 3:00 PM call with another potential client.

While this may sound completely unrelated to brain injury, as is often the case, there is so much more than meets the eye. That night, as I reviewed my day, I looked back in time. If you are wondering if I used this as an opportunity for a five-year lookback, you are correct.

Life five years ago was vastly different than it is today. I was a five-year brain injury survivor and still learning the ropes of my new life. While five years may sound like a long time, I know today that I was still such a TBI Newbie. At some point, just before my five-year anniversary, I learned through our statewide Brain Injury Association that it was at five years that most people reached out for help. It was more of a significant milestone than I knew at the time.

By that time, I had begun the slow process of rebuilding my career. But as a brain injury survivor, I had to be mindful of my limitations. For the most part, the productive part of my day ended right around noontime as neuro-fatigue set in. Neuro-fatigue is unlike traditional weariness. With traditional weariness, my body is tired. With neuro-fatigue, however, the tired seeps to the level of my soul – it is all-encompassing and all-consuming, sapping every bit of energy I have.

But, like most survivors, I found a work-around. My work-around was simple. I stopped working around midday every day, knowing that nothing good would happen after lunchtime. I used my afternoons to cycle, to do a few chores, and to heal.

But work is work for a reason and it doesn’t always happen on my terms. There were times that I had to take calls with clients after lunchtime. Had I been in the position to have an afternoon of calls as I did last week, the results were… well, punishing.

At five years out, an afternoon of conversations would have wrecked me. I would struggle to use the correct words, aphasia lurking just under the surface. If I was able to get off an afternoon call without too much collateral damage, I was still unable to celebrate. The worst was yet to come. The next day, and sometimes for several days, I would essentially be useless. Neuro-fatigue caused by pushing beyond my TBI limits is not a “one and done” event. It can linger for days. I would hunker down, battling unfathomable brain fog, and wait to recover.

From a self-worth standpoint, it was devastating. How can a couple of high-intellect conversations bring me down so far, for so long? The answer is easy – I am a traumatic brain injury survivor, and it goes with the territory.

Let’s time-hop five years to last week’s afternoon of calls. Both calls went well. I still struggle with my speech, especially when I’m tired. I did fumble more than a few words, but another compensatory strategy set in as I am able to recover from speech stumbles so quickly these days that it almost goes unnoticed by others.

And the day after my afternoon of calls? How did I fare?

Truth be told, it was just another workday. There was no lingering brain fog, no extra layer of exhaustion, and no multi-day event as I tried to get my feet back under me again.

When I compare the two experiences – one last week and one five years ago, it’s hard not to be grateful. I still have challenges related to life after my injury, some minor and others rather significant. But when I look back, I am able to clearly see that I am continuing to heal. Who knows what life will look like five years from today? Unlike the early years after my brain injury, I am no longer filled with dread.

If you are new to your journey and everything seems unfamiliar and you find yourself losing hope, please remember that time is your friend.

 

 

Comments (5)

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.

It will be 24 years for me this year and I can't remember ever asking for help. I live in a town of 600 people and I would have to go a long ways to see someone who might be qualified to talk to.
I was paralyzed on the right side when I came out of the coma but I can barely move my toes. I've gone to foot doctors in my area and they don't have much of a clue on how to deal with them.
I'm just getting tired of being in pain physically and mentally. I do need help.

David I love your posts.

Despite any difficulties I am having in the moment of being unable to express my lived TBI experience, without fail, every time I read your blog I feel such immense relief that my experience is real, valid, not imaginary and very much shared by other TBI survivors. I have shown friends and family members your blog saying “This! This is what I mean, this is what it’s like!”.

Thank you and god bless.

Hi, I'm a physician at the 12 year point post-TBI. At 74, I have to add aging to neurofatigue from my TBI. About 2 years out I could return to part-time work as a medical researcher but still couldn't think quickly enough to go back to patient care and teaching. I retired from work at age 64. I'm still active part-time with hobbies. In fact, I'm developing on a research proposal to improve lingering sequel to TBI for the TBI survivor and caregiver. I'll submit it for funding. Funding is awfully difficult to get. I'm always looking for rehab ideas to put into my proposal that could improve the life of the survivor be it 5, 10 yrs, or longer since the TBI. I'd appreciate suggestions. Dr. G

Thank you for sharing that great news David and the hope it gives to me.. I am in the 15th year of survival and I do still have much of the brain fog sometimes but I accredit it to stress more than anything... I do have a lot of stressful things always happening in my life and I am surrounded by people that do not believe a thing is wrong with me b/c I do so well -so they think or want to believe- but anyway there is much denial always in my life from family and friends and that makes it hard for me to be as normal as possible b/c if I am not they will judge me as though I am simply pretending or something-not quite sure how to say what I feel from them at those times but nothing good at all- but I try to be as positive as possible and am extremely thankful for being able to do as well as I do do... so what I am saying I suppose is that my surroundings are the damage to my healing the best possible ... they act as though nothing ever happened to me-even my very own mother and she saw me when the doctors were diagnosing me as DOA to her and still she expects so very much better from me.. like I am not doing what I should be able to do.. just simply not at all with an ounce of empathy nor understanding and that goes for just about all that I am around occasionally b/c no-one really ever calls nor comes by to see how things are going and I say this without mentioning also the 5 major major spinal operations I also had and just had the 5th one in November of 2019 and it was so complex the surgeon said that it will be 3 to 4 years before I begin to really heal from the 13 hour operation was the most complex one he had ever performed on me yet and also they do not realize that all of those operations for as long as 15 1/2 hours and the very least one of them was 9 hours, but to say that I was under al those hours I do know that had a great negative affect on my tbi also.. my damage is all of my frontal lobe but the worse part was the left frontal lobe with almost as much damage to the right lobe also.. it was not an easy operation to recover from at all.. I know I am not at all the same person but everyone else just thinks it is an attitude problem or whatever it is going on with me at that time they always blame it on something or say it is nothing and I so want just one friend at the very least to actually give me a bit of a break and call it what it is.. so I am not always struggling so hard to seem like I am the same as once before the accident -car accident- I apologize for writing about this like all over the place with not sense of real structure to it and so scattered but this is another problem I have and more than not, even worse than this.. and of course this is not even in detail at all.. much more to be said to try to understand but I really am about to fall asleep as I always do when writing or typing .. I am forever so tired and cannot do much since the last spinal operation due to he many problems I came out of that with and I pray that I never go through such again.. but I struggled to walk again, to feed myself again, and use the all of my prior motor skills which I lost most of after this past operation
Well, so sorry I went on and on but I just really wanted to get on here and say thank you so very much for sharing what is wonderful news to me and it made me realize it is up to me to decide what I need to minimize out of my life and what to keep in it in order for a more hopeful recovery .. GOOD LUCK & GOD BLESS ..
Sandra

Thank you for your words of hope and encouragement. My son is at the five year mark for his tbi. I look back five years and can definitely see the changes. It is good to know that recovery still continues to happen. If everyone listened to the doom and gloom of doctors, they would not realize that recovery continues for the rest of their life.