Reinventing The Wheel, Again

"When I was young
I never needed anyone
And makin' love was just for fun
Those days are gone

Livin' alone
I think of all the friends I've known
But when I dial the telephone
Nobody's home

All by myself
Don't wanna be, all by myself anymore
All by myself
Don't wanna live, all by myself anymore

Hard to be sure
Some times I feel so insecure
And love so distant and obscure
Remains the cure

All by myself
Don't want to be all by myself anymore
All by myself
Don't want to live all by myself anymore

When I was young
I never needed anyone
And making love was just for fun
Those days are gone

All by myself
Don't want to be all by myself anymore
All by myself
Don't want to live all by myself anymore

All by myself
Don't want to be all by myself anymore
All by myself
Don't want to live all by myself anymore

All by myself
Don't want to be all by myself anymore"

 -Eric Carmen, "All By Myself"

I feel like I've been reinventing the wheel over and over again for the last eight years. It's frustrating and it's wasteful and it's wastefulness is frustrating. One of the painful lessens from this experience has been learning the limits of my own endurance. Each day there is a finite amount of energy available for my use. There are no extra reserves. There is no "second wind". I can't gulp down a Venti Starbuck's with an extra espresso shot and pull an all-nighter, those days are gone, baby, gone. So I've had to figure out adaptations. Work- arounds. Back-up plans.

Mostly, I did this on my own.

Why? 

Part of the reason was that when my symptoms were at their worst, information on TBI, and mild TBI in particular, was not as available as it is now. Lord knows, I searched and came up with precious little useful info. 

Another reason was that the majority of my health-care providers didn't have much to say about it. They would dutifully write down the symptoms that I reported, nod sagely, pat my hand, assure me that "things would get better with time" and schedule another appointment in six weeks. If I pressed them for something more, I'd sometimes get a referral to another doctor and the process would be repeated. Throughout all of this, the transmission of information in terms of what type of symptoms I might have, their courses treatments and expected outcomes was largely absent. Perhaps no one said anything because they were afraid of "creating" new symptoms through suggestibility or maybe they really didn't know much about mild brain injuries. Whatever the reason, I was left to figure it out on my own, but as I did, and as I learned more, I discovered that others had figured some of this out before me. So I was left with the questions, "Why didn't anyone tell me?" "Why did I have to learn how to adapt through trial and error when there are multiple studies on post-concussion syndrome?" 

I was asking all the right questions to people who should have been the right people, but I wasn't getting good answers. 

I still don't have good answers not for those original questions and not for the questions of WHY I didn't get good answers in the first place. But that IS a question we should be asking. If people in the midst of a health crisis are not getting vital information from health providers about the condition for which they are seeking treatment then there is a problem in the system.

Any health crisis can be overwhelming, but brain injuries are especially challenging because they directly affect cognition. It is at this time, when individual's with TBI's are struggling with decision-making and planning, that they are most vulnerable, and it is at this time that they should be receiving the most support from health-care providers.