Predictably Unpredictable

Predictably Unpredictable

Getting used to living with a traumatic brain injury takes time — lots of time. Years ago, I heard what so many of us have heard, “Recovery from a brain injury is a life-long experience.” I have to admit that that comment really didn't bother me that much. When you really dig deep, most of us are recovering from something.

But the real eye-opener was how long it has taken me to realize that the light at the end of the tunnel is not a train. I am beginning to experience moments of life being okay. It has taken years.

While there isn't a lot that's really comfortable about living with a traumatic brain injury, there is an element of predictability to it all. I've been dancing this new dance with my brain injury for long enough to know how it feels. My dance partner, perennially paired with me on the dance floor of life, is predictable.

I can expect to live daily with brain fog. That's part of our new TBI two-step. I can expect to have bouts of overwhelming exhaustion. Occasional vertigo and speech challenges are part of this new life as well. Word finding after a long day can be like playing hide and seek with my vocabulary … now you see it, now you don't.

The point I'm trying to make is that for quite a while, years in fact, this was the only existence I knew. Where living with a damaged brain used to be unnatural, it's now my normal state. Somewhere that Winnie-the-Pooh voice that narrates the timeline of my life just said to me, "David continued to grow, sometimes quickly, sometimes slowly, as he wandered the Hundred Acre Wood of his mind."

Early on, had you or anyone shared that this degree of acceptance would slowly permeate my being, you would have been met with a resounding "never!" Recovery is a process, not an event. And most every day, I proceed a bit deeper into my new life.

But there is a bit of an unexpected pendulum effect to all this — one that swings from the realm of the predicable, through its arc, into the realm of the unpredictable. Shared before and most likely to be shared again, there are two links in the chain that define so much of my new life as someone with a brain injury.

The first link is my brain injury. The second link is another newfound friend — post-traumatic stress disorder. They are forever bound, forged as one by the hammer and anvil of my cycling crash back in 2010.

As predictable as my brain injury is, my PTSD is equally unpredictable. It keeps me on my toes.

My wife, Sarah, and I live in Southern New Hampshire. Our town has three fire stations with one being only a few blocks from our home. I can hear the wail of sirens a few times daily as our first responders heed the call of duty. There are many times that an ambulance can wail by our home and I don't even give it a second thought. At other times, that same sound can reduce me to tears, leaving me paralyzed, unable to move, my eyes brimming over. There is no rhyme or reason. Now you cry, now you don't. It is predictably unpredictable.

My old friends, Mr. and Mrs. Night Terror, work in much the same way. Many nights find me sleeping, albeit haltingly, from sunset to sunrise with no real after-dark surprises. Then, there are the nights, where for no reason or cause, that I am dogged by "scare your pants off"' nightmares that see me kicking and screaming as Sarah tries yet again to call me to where it's safe, back to a wakeful state.

Happily, there is always something to be grateful for. I have long been a glass-half-full person, so finding gratitude is never very far from the surface.

If I shine the searchlight back over the last few years, daytimes are easier. Like Olympic dancers who have worked for years on perfecting their dance routines, so have I learned to dance with my brain injury. But unlike Olympians who spend time apart, my dance partner and I are forever together. We know each other — and there is a sense of comfort in the familiar.

I have to stretch a bit further with my PTSD. The less-than-friendly nights are fewer than they were a year ago. And a year ago, they were fewer than the year prior. Looking back, I can see progress. So when I look forward now, I have hope. I have real hope that next year will be easier that this, and that the year after that easier still.

And it's largely because of that hope that I am able to get up every day, and move, however slowly, forward in my new life.

Comments (18)

Thank you!
Well worded the familiarity gives me confidence in my self which after yrs of no understanding from family which was my career (worked for father) and not understanding some behavioral issues my self I blamed my failures on my self well who else
The more I go back to New info new techniques I am quite inspired and the emotional crap and alone feelings slowly move after many years of just going about your different being I experienced slot of anxiety not going back to physicians or anxiety meds I just figured as my life had not and is not going as mishaps and myself let down again again what's wrong with me I am not stupid ,well I must b e.
So encouraging to read a well written real person speak of the some days on some days off...thank you thank you. A GREAT apPRECIATOn. To the ones close that give time to learn what the other is or may be going to

So important that some body understands what a cure in that moment when if some one can relate .
Keep on lovely quick read for me.

Shelli. Colorado

This a wonderful article and as a caregiver, gives me hope...Thanks
Thank you for sharing the unpredictable consequences of your cycling crash including post brain concussion syndrome. Personally I can identify in a small way with terms you use such as brain fog - inattention, change in energy level, fluctuating responses to sounds, word finding difficulty at times, and awareness of the inner voice. Appreciate it. You have a wonderful attitude. Best wishes.
Thank you so much for your insight! I did a double-take when I saw the title Predictably Unpredictable, that is exactly what I have been calling my life for the past three years since my brain injury. at this point in my life, the brain fog, the unpredictability, and the PTSD are overwhelming. Thank you for the providing hope, Sending you all the best!

I haven't in the past looked for TBI support groups.  I'm just not that kind of guy usually unless I was an advisor or facilitator but THANK YOU for your article.  It is nice to know that when I do look that I don't have to look far to know that I am indeed not losing my mind or sanity or my grip on my reality just because I can't get a grip on the same things that you've mentioned as well as my self awareness.  I constantly feel as though I could do something (my job for instance) and in minutes or hours and completely knocked down again with the realization (and constant surprise) that I can not.  Unfortunately this also frequently comes with pain and almost always depression or at least mounting frustration.  

Seeing your cheerful article written in much the way I usually sound helps immensely knowing I'll get either better or to a point of acceptance if I don't get better.  The former is preferred, but I can live with either... and enjoy life and really... isn't that the point.

Thank you again.

Wade

I'm gonna get crazy radical here, 10 years post, surviving multiple TBIs, becoming a now widowed single dad to three exceptional children, including one with special needs, whew! and say: I'm holding on for Post Traumatic Growth. Bring it!
I am 5yrs post head on collision and your article is spot on. The doctors told me that after.a years time...I would max out on progress. NOT TRUE!! I am STILL making progress and though I will never be the same.....I will never give up.....none of us can. Articles like this make it easier to travel on with the journey of acceptance....TY:)
nice article.....happy for you to have come this far....my BI was 7 years ago and my life has been going down the drain ever since.....wish I could be this positive
Great title...two months after neurologist said "honey its been five years,get used to it" I woke up and something was different. The buzz was gone. It came back but slowly in the next two months it disappeared. Events of life that would knock me down into the all familiar pathway of anxiety attack then depression then migraine were no longer show stoppers but minor events. Have hope. steve
Thank you, my accident was May 16 2009. Was in the hospital three months. Broken neck and back but was in a coma for five weeks. My TBI gets so hard and foggy I just don't know anything. I have pretty much everything you talked about but the nightmares. Thank you again.
It is as if you are writing my story David. In an odd way it is comforting to know it is not all in my imagination. What a long strange trip it's been. For me, only 18 months :/

Great article.NZ Herald this morning is quoting the huge "growth" in TBI 's reported here over the last few years.We are a sporting nation,dont sit around much.I had my first TBI aged 23 (1976)when my horse kicked me in the face.Jaw busted 9 teeth lost,face cut.It has all healed ,but they never mentioned concussion .Fast forward to 1996 and the boom of our yacht was dropped on me.Again in 1998.Same thing only a life changing event this time.

I have ;stood up too soon under a low cupboard;stood up under a window sill,walked into a closed ranch slider door and 5 weeks ago ...you guessed it copped the boom of our yacht again.Same old ,same old....sleepy,losing words unsteady on my feet,sleep disturbance,eyesight slipped back.Im not saying Im used to it,but now in my 62 nd year it doesn't  freak me out as much.Resigned from my Real Estate Career finally after not performing well over the last 15 years anyway. Am going to build a new business ..slowly as my recovery allows. Am stopping to smell the roses,enjoy my Grand kids/friends/family/facebook friends too.Cant fight the tide.The Universe is looking after me.Life is good. Life is different ,but good.

I too have tbi...this was helpful, thank you for sharing. Yvonne
Put it all in perspective, for me a sense of humour has got me through but the brain fog and word finding is the hard part. Thank you for the article
July 5, 2002 was the day I was thrown from a vehicle going 85 mph. In addition to the TBI, I suffered multiple other traumas. I'm like Humpty Dumpty. I'm full of titanium screw, rods, plates and cages, holding my body together. Dealing with TBI, PTSD, depression, chronic pain and other ailments requires my full attention day in and day out. I've seen myself progressing over the years as well, and I enjoyed reading this article. I can relate to everything you're experiencing. Yes, this life of mine is predictably unpredictable, but don't you think everyone's life is unpredictable? None of us predicted that we would suffer from TBI's. It's important for everyone to live their lives as if this moment may be their last moment. You never know what will happen next.
Dancing the cha cha with you! Great explanation of TBI living/life.... I am a 24 yr TBI survivor and it has taken me a long long time to accept this... Thanks for the 'predictably unpredictable' article... it reminds me and helps clearing the fog today. Best wishes~
Thank you David for this article, my accident was 9/26/1990. You explain the basic day to life of a TBI survivor so well. I was in a deep coma for 6 weeks, the hospital for 3 1/2 months lost 5+ years of memories.
Hi there. I'm now just over one year after my TBI. I have been told it may be five to ten years for my recovery. In the first six months, I recovered fairly quickly, but now progress is so slow, I don't notice it. It is important to look back over months, not weeks, for any progress. My speech, and eye sight, with double vision and vertigo, seem to irritate me most of all. That feeling of despair is felt very often. I used to be a professional horse rider, but now have no desire to ride. Strange, but I think it's my brain telling me not to risk injury again so soon. I have been back on a horse, and can still ride, but don't want to! Maybe one day! Thanks for sharing your experiences