Doing it ourselves… anyway.

If only there were a team... Most of us have to figure it out ourselves.
If only there were a team… Most of us have to figure it out ourselves.

After my rant yesterday about how rehabs let people go without training survivors and/or family & friends about the cognitive impact of concussion / TBI, I have mixed feelings.

I do believe that it’s incumbent upon people put in charge of us to do their utmost to help — at least not hurt. And despite the many challenges of figuring out how/when to return to play, work, or learning, I do believe there is enough knowledge in the healthcare field to put together at least a modicum of information that will better inform people who are being discharged.

There are a lot of smart people out there, running around in healthcare, and I don’t for a moment believe that it’s impossible for them to see the forest for the trees. That’s what ends up happening with concussion / mild TBI discussions. Everyone is so focused on the ways that people and brain injuries are different, that they completely miss the commonalities and the ways that make every head injury the same.

Namely: The very action of concussion produces specific results — releasing biochemical havoc into cells that either seriously disrupts their activity or actually kills them. It twists and shears and bruises the myriad critical relationships between interdependent connections in the brain, and it makes your cerebral matter respond differently than you’re used to.

Depending on where you got hit or hurt, your executive functioning — your ability to think things through and make good decisions — can be seriously impaired. It’s due to the brain being injured, and anxiety and problems with impulse control also play a role. Also, the speed with which you process information and your ability to react (through physical coordination or making a good decision about what to do) can be altered.

You don’t react as quickly as before, to that oncoming ball or hit. You don’t respond as quickly as you should when the police officer asks you a question. You make poor decisions and take poor action about what to do in response — you fumble the ball, or you start yelling at the officer.

So, you can get yourself in trouble, all over again. You can make terrible choices that put you back in danger’s way — and put you in even more dangerous situations. Unless you — and the ones who care for you — understand that basic fact, getting patched up and being sent back out there again before your brain is back on its proverbial feet, is just asking for more trouble.

You hop back on the skateboard or snowboard before you’re ready.

You start playing football or soccer or lacrosse before you’re physically ready.

And you get hurt again. This time, worse. And repeat concussions are nothing to laugh off.

Explaining that to people may seem like a vain prospect, and maybe it is. Maybe it’s true that nobody wants to listen, and nobody takes mild TBI seriously. Maybe healthcare folks think that concussion takes care of itself, and all they need to do is rest and take it easy. But people are missing the fact that not only does TBI affect your ability to function well — it can also make you incredibly literal, stubborn, hard-headed, and single-minded. Your thinking can get incredibly rigid, and you think that the only option for you is to get back in the game as soon as humanly possible.

Our medical system in the States is designed to treat and release. Patch us up and send us back out there. It’s not geared for long-term help.

So, we have to take care of these things ourselves. No matter what. Any way we can. We have to educate ourselves about concussion and TBI and what it means. We have to care for ourselves and recover on our own. We have to dig and dig and dig till we find the answers we need. And we have to do it on our own dime, without much help from anyone, really. Every now and then, someone comes along who can help, but those people are few and far between.

It’s actually much more reliable to use the Internet and surf the web, looking for information from others who have been through it… or professionals who post useful books and papers and studies online. In some cases, we have to get “creative” to find the help we need.

But we do what we must. Because the system as a whole is not designed to actually help us beyond getting us back on our feet. The whole rest of everything is on us.

For better or for worse.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

3 thoughts on “Doing it ourselves… anyway.”

  1. Been trying to figure out a way to put this into words myself but you’ve done it brilliantly here! Lots of time and money invested in finding something new to try but feel I’m worth it. Did my rehab at Craig Hospital here in Denver. They only handle brain and spinal cord injuries and they had no info to pass on to me at release on some of the stages to expect. Yes, every injury and individual is going to react differently but as we’ve found through online support groups, there are similarities to them all!

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  2. Yup! We must never give up. Thankfully, time is not a measure of recovery. Perseverance is the key to recovery. Fortunately our brain is “plastic” and capable of learning new ways to do and learn. Notice I did not say relearn. Because, we are different and there is no “re” anything. We cannot go back. We can only go forward and that forward, that future will never be the same as the past. Step into your future. Welcome it. Embrace it. Trust it. It can be better than the past. Take care of yourself better, love better, forgive more, give more, receive more. Be patient and kind with yourself. Recovery will keep coming. Accept the new you. You survived for a reason, figure it out or decide what you want to do or how you want to live your life. You can do this!

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  3. Absolutely – and you make an excellent point I actually never thought of. I have always been thinking of “re-learning” things, but it actually is learning from scratch. I guess I really wanted to believe for the longest time that I could just retrace my steps and it would all come back to me. But you’re right. It’s just plain learning – not RE-learning.

    Taking care of myself is something I’m gradually learning how to do. Not pushing so hard, but just letting things come and go, and allowing myself to sleep. To rest. To actually go easy and let myself catch up. And figure out next steps. Just let it get sorted, as it comes.

    Thanks for the pep talk. I really needed it this morning!

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