It’s been a few months, since I first put 2 and 2 together and realized that there was actually an “umbrella” that I could collect all my internal issues under — Mild Traumatic Brain Injury, or MTBI.
I’ve been talking to folks in support groups and medical professionals, and it just amazes me how little information is readily available, unless you’re “locked on target” and deliberately seeking it out. I am locked on target and I’m on a mission to figure all this out, and it’s my hope that my writing on this blog will help others who are pretty much clueless about what TBI is and how it can affect your life and that of others.
I came across a great book, which I’m gradually working my way through, called Brain, Heal Thyself by a caretaker for a stroke survivor, who helped her friend return to functional health — despite what the medical establishment said was possible. I’m still reading, but on page xvi of the Introduction, one of the great things she says is how medical professionals like to say “Every stroke is different,” as a way to get out of answering our “weird” questions. Amen to that! I am so sick and tired of that lame cop-out, where people who go to school for many years, studying the dead and the dying (they start out with cadavers, after all, and often see only people who are so far gone they can no longer avoid visiting a doctor), can’t bring themselves to study the living… or give us the credence to take in the information we pass along to them, because it can’t be standardized, categorized and controlled the way they’d like.
I am just so sick of it. The conflicting information, the arrogance of a medical establishment that will say, one month — with all confidence — that eggs are undoubtedy very bad for you and will probably kill you if you eat too many of them… And then turn around the next month (apparently, when the Egg Growers Lobby raises a hue and cry and funds a conflicting study) and tells us — with absolutely certainty — that eggs are actually not bad for you, and you’ll probably suffer health defects and slide slowly downhill in a state of painful, irreversible physical decline, if you don’t eat three eggs a week.
These same people are running around doing studies and using advanced equipment for research, and either keeping their findings to themselves — locked away behind the wall of medical terminology — or discouraging “lay” people from finding out about it for themselves. I can’t tell you how many weird looks I get from doctors and clinicians, when I talk about research I’ve read or things I’ve observed in my own life.
And, as was the case yesterday, sometimes I’m contradicted on my findings by doctors who freely admit that they are not experts in TBI — and actually say they know next to nothing about it — but they’re sure I must be wrong about my symptoms. Probably because I’m not a doctor.
But I live in this body. I am living this life. And if anyone should know what’s going on inside my little head, it would be me… provided, of course, I can apply unsparingly rigorous “reality checks” to what I think I’m seeing/hearing/thinking/experiencing.
That’s the pecadillo about impaired self-awareness. The one person who should/could be the expert on their brain, might not be. It’s maddening. But there are ways around this — when you know you’ve got limitations, you can plan for them, work around them, accommodate them, and adjust your standard deviation metrics.
So, I’m just working my way through all this. Trying not to get locked into one “set” way of thinking about how my brain functions, sticking with the facts of the matter:
- I was struck in the head by a rock around age 8, was knocked out briefly/dazed and groggy afterwards, and I noticed significant changes in my behavior, moods, and cognitive abilities thereafter.
- I fell down a flight of stairs in 2004, hit the back of my head several times, was intensely dazed/nearly knocked out for a few second, and thereafter found myself missing key information (like not recognizing people I worked with), unable to get a full night’s sleep, having intensified temper flares, and a whole raft of cognitive problems (like suddenly being unable to multitask and switch gears like I used to very fluidly), which I attributed to job stress, but which continued after I left the job (which imploded around me, when I couldn’t keep up with the pace).
I can’t keep second-guessing myself on my TBI(s), and I can’t give in to people who assume that because I do a really good impression of a normal person, it means there’s nothing wrong with me. There’s a whole lot wrong with me. Inside this head. That I can’t articulate very well with other people, when speaking. And I’ll have to work through this, one issue at a time.
If there’s anything I have, it’s time.