Learning about mTBI

Helpful Hints:

1) Learn. Learn. Learn. Read everything you can about mTBI. After you've canceled out every diagnosis that doctors actually know something about... and TBI seems to be your last hope... READ, LEARN, QUESTION EVERYTHING YOU CAN FIND ABOUT IT.

2) Keep track of what you learn; you might forget later.

3) Find someone you can relate to - on the internet, in real life, in books. Justification for the problems you are facing can help a lot in recovery.

4) Know that you know what you're experiencing is real.

5) When people doubt your symptoms - Read and Learn all you can about what you're going through, and where you might be able to get help from someone who's seen the same problems before.

6) Stay tuned. I'm always reading to keep my brain functioning. If I find something good - I'll try to put it here!

7) I believe you.
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It breaks my heart to read about people with medical issues that are just not recognized. It breaks my heart to see people less fortunate than myself. It absolutely breaks my heart to know I am having these frustrating difficulties and absolutely struggling day to day... and then to pass by people who are visually more disabled than I. It makes me feel selfish. It makes me feel ignorant. It makes me feel needy and pitiful. I feel absolutely ungrateful and dramatized.

How could I stand here absolutely confused and uncomfortable when I am fortunate to have graduated college and live alone? How can I claim my physical strength or my cognitive skills have ceased from a once notable level; I am capable of reading, learning, writing and communicating in a way that I may seem outstanding still? My awkwardness is not often perceived by others and fishing for words is not easily noticed. How dare I feel I need help when I should be helping others??

It breaks my heart that in a time where I need the most help I've ever asked for, I still debate the necessity of putting myself first. It breaks my heart to have isolated myself from the thousands of people I used to know because I can no longer do favors for them or solve all their problems. I have isolated myself because I look so 'normal' and don't have the energy to waste on arguing with the people who knew the 'old me.' I have isolated myself because these people see what I see - other people who are visually more disabled than I.

Lastly, what breaks my heart more than for those less fortunate or my own struggling, I feel so much remorse and compassion for all of the people in the world who also feel lost and frustrated. I might have mentioned this before, but today in my daily "reading" I came across another example of someone going through the same frustrations... only four years after trying to adapt to his changes, had he started learning about mTBI and making sense of his issues.

This guy particularly interested me because he referred to himself as a "high-functioning" survivor. He's intelligent, had always been a hard-worker and persevered. Most takes I've read that are seemingly "most important" around this topic are stories about people who actually needed their head cut open, are now quadriplegic, lost all ability to read and write, or have to rely on other people. Very few instances have I found someone that does not fall into the "severe or moderate" category of their accident. Very few examples have been mentioned separate from those added to 'broad symptom' overviews. Very few have I been completely able to relate to.

He calls himself brokenbrillant; he started a blog with the same compassion I have for others just like him. I'm not sure how long he worked on what he's put down - but it's slightly more organized than mine. And he hasn't written anything since January... which I'm guessing has to do with him pouring so much energy into educating others with his blog that he "just couldn't" do it for a while. No big deal - maybe he'll be back to say more, maybe not.

He has written somethings that I swear I've said outloud and he just wrote the words...

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.

I find his blog particularly humbling. Support groups are wonderful for any disability or particular subset of struggles. Dr. Ed Halowell - one of the gurues in ADHD psychology - started the first ADHD support groups and wrote about the amazing results his first 11 participants... or 16? I don't remember. These people were functioning and a little disorganized but clearly capable to live day to day - but were astounded to relate to others who understood them!

His blog is humbling because I need the support right now. A friend of mine whom I don't see often said to me a few weeks ago... "stop mentioning your problems, talk to me as if you're normal because I don't see or hear anything wrong with you." Although I'm sure his intention wasn't to hurt me, the fact is that I am stuggling. If I don't talk about it and work through it, or find ways around it, I feel lost. It's a big part of my life right now and I need support. I have not had the energy to quite find support groups at this time - but I read about another story of a former PhD in Economics, graduate from Duke and Yale. Her take on support groups:

In Austin, Anne eventually attended a support group. At meetings, she looked around at the quadriplegics and others with severe head injuries and felt fortunate but not always supported.

As difficult as it is for me to 'take time to heal' and to put myself first for once, I need it. And there are other people out there that need it to. I left a comment for brokenbrilliant saying, "for what it's worth, I believe you." I hope to hear from him. And I hope sometime down the road I'll find a ton of other "high-functioning" TBI survivors that will give me another chance to say "I believe you." Because although it doesn't get less frustrating, I know it's worth a lot to be believed.