I woke up today thinking that the TBI survivor community has a great opportunity before it — with the power of the internet and new electronic publishing technologies like blogs and forums and emerging print-on-demand technologies, we really do have the ability to offer each other the support that we cannot (and probably will not) find from the “system” that’s supposed to help us.
The medical industry doesn’t seem to have much interest in helping us address our issues in a consistent and substantive way.
All that some can manage to tell us is, “Every TBI is different,” without mentioning the myriad similarities so many of us have — and can benefit from hearing/learning about.
And frankly, there’s not a lot of money in rehabilitating someone who is no longer “able” to function at the same level they were before…
So many of us just get sent out to pasture. We fall between the cracks. And people who are in public positions to change that, don’t seem to care. I’m sure, on some level, they do, but so much is not known about this condition, and so many other conditions are more obvious and more easily tracked and more easily conceptualized… and are less frightening to the average person, that TBI just isn’t on the radar the way, say, cancer and heart disease are.
Now, I lost one of my little sisters to breast cancer, 2-1/2 years ago. I sat at her side and held her hand during her last hours of dying, so I’m certainly not opposed to cancer getting as much attention and funding as possible. And people close to me have had heart issues, so I’m all for addressing that, as well.
But doesn’t anyone have any attention to spare for TBI folks?
Perhaps not — but we do. We, the survivors. We, the family and friends. We, the ones with the most to lose and the most to gain. We can — and should — be there for each other and pool our resources and experience and strength and hope, for the benefit of everyone concerned.
Ultimately, the very society which doesn’t have much time for us, will ultimately benefit. But that’s not something I can prove right now, and it’s not something I can substantiate with numbers and metrics, so society at large will just have to wait and see how well we can rebound… and how well we can serve one another in the best way humanly possible.
An opportunity lies before us, to come together and pool our resources and offer one another help and support — largely in the form of information that’s distributed across the world wide web. Our info can go a long way. We can do for ourselves, what others cannot do for us. So, let’s do it!
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October 5, 2008 at 4:30 am
NEdream26
Hey BB, thanks for the comment! I’m so glad you’re back in the game. I took a short sebatical myself… and may need a little more time before I can fully collect my thoughts on your recent postings. But I’ll start a little with this one…
I couldn’t agree and disagree more. I too had some iffy experiences with the wrong practitioners… and was quite shocked after devoting the last six years of my life towards working in the American healthcare system. Needless to say, I was greatly disappointed!!
But I’ve found a lot of things in my own research that have recently been published from the medical community – one document released July 2008 (wowly-recent!). I believe this relm of concussion is a new ‘hot spot’ for research; and those who are unaware of how dramatic the consequences of a concussion can be, they are now diving in to find out. I want to firmly believe that most practitioners just haven’t been presented with enough adequate research to make an incredible dent in the way they practice medicine around concussions and mTBI.
This doesn’t make the problems less warranted for medical advice/treatment. Nor am I excusing practitioners that seem to lack the gold standard of empathy needed in any practice. However, I’m suggesting that the education of what’s really going on, or how to really treat (medically, not just respectfully) patients like you and I has just begun to gain some ground.
Your search for all this knowledge is right at the core of where medicine is heading in regard to the brain and concussions. Soon I hope to post some articles for thought – and I’ll put up the one I mentioned earlier. I also hope to eventually use my doctorate to educate these practitioners as more information is available.
Keep diving into information! Some is credible, some- well, not so much, although definitely thought provoking! I can’t diffuse it all, but I was certainly trained hard enough to look at all the variables and relate published context to real-life situations and actual populations. There are reasons the system works as it does.
I read everything you write and I find your desire to educate empowering. Keep it up – and maybe together we can hit the points that need to stand out and that can be validated amongst a medical community. I have the educational background, I’m close to finding the respectable audience to begin this ‘education-debachle!’- but all is wasted without credible information to relay!
Talk soon!
NEdream
October 11, 2008 at 12:03 pm
brokenbrilliant
Hey NEdream -
Thanks for your comments. I agree that tbi is just now starting to get the proper attention it deserves. I think the Iraq wars have done a lot to raise consciousness, and the new findings being done around sports concussion (esp. with relation to the NFL) are very encouraging.
Things ARE starting to move, in relation to this issue, which affects so very many of us, from kids who get banged up and never get help (like me)… to parents and teachers and siblings who have to deal with the after-effects of problem kids like I was (my family are still feeling the after-effects of me growing up in their midst, and with the holidays coming, I’m bound to get more reminders of how hard it was on them — they’re still a little afraid of me, even though I’ve come a long way, which is hard to take at the Thanksgiving table)… to the violent offenders whose behavior and actions stem from head trauma (can’t tell you how many times I narrowly escaped punishment — and a couple of times being arrested — in some cases because I figured out how to angle my way out of trouble)… to the victims of violent offenders who don’t realize that the person who totally ruined their life was hit on the head a lot when they were little and never got the chance to heal… to the overtaxed social infrastructure of this country that keeps building prisons… I could go on, but I’m getting off-track again
I think the original thought that was behind my post got lost along the way (that tends to happen to me a lot, especially when I get excited, which is frequently
was about the data issues around tbi. There is more and more information available, it’s true… but one of the problems is that it’s not well-organized in a way that’s accessible to a lot of people who need it. With your education and your creds, you have access to information (you know where it is, you know how to find it, you’ve been trained how to read and interpret it). There’s a lot of info online about tbi. There’s more and more public scrutiny and books coming out.
All good.
But how do we, as a society, as a culture, as a nation, make the best use of this data? How can we get the right information to the people who need it most? Each head injury is a little different, I constantly hear. And that makes it almost impossible to generalize. But in the process of being cautious about not over-simplifying things, I think a lot of good data about specifics can get lost. And there are a lot of coping skills, techniques, and personal experiences that can benefit a wide variety of people — even if the info is not a “direct hit”.
Sometimes, what we tbi survivors* need most, is just to know we’re not alone.
*I dislike that term, survivor, because it makes the tbi a defining element of my life, rather than one of many things in my life that have shaped me into the person I am.)
So, I think my biggest concern — and my biggest hope — is that we can get our data issues together. As in, find ways to share our experiences, strengths, hopes, strategies, resources, collective intelligence, with one another in meaningful ways. We have all this information, and we have all this insight, and we have all these people who have experienced this thing called tbi — some of us recovering miraculously and able to function on a daily basis far beyond the expectations of any experts.
My hope is that we can eventually find/build a way to share all this information with each other — maybe in a blog format? Maybe in a database? Who can say? I’m not a big fan of centralized management of huge initiatives, but maybe that could help us? And it would need to be a community effort, I’m thinking, rather than something that comes out of a commercial health-care venture. Sure, there are rehabs that do great work, and they have access to great information. But at the end of the day, they need to make money to stay in business, so on some level they cannot help but be a little bit compromised. Yes (and I’m thinking out loud…) I do think we need something that’s centralized and organized, but community based and open to all who need it. Full of great information that’s both objective AND experience-based.
Despite our differences, there are things we have in common, and there are ways we can help each other. When I say “we” I mean all of us — tbi folks and doctors alike, physical/occupational/speech therapists and family members alike, and so on… all of us who are impacted by tbi.
We are not alone!
November 16, 2008 at 5:11 am
NEdream26
Hey BrokenBrilliant –
I think you’re completely on to something. I love all your new posts, too (random comment in there, sry!). I keep ruminating all of those things in my head until I get overwhelmed with ideas and hope and desire to… collaborate, raise money, educate, advocate, pick-your-cocktail… all of what you said!
I just don’t know how to do. And I don’t have a lot of energy to either, to be frank. I have these wonderful ideas about it… I just don’t know who to ask, who would help, if it exists already, where I’d start…. etc etc etc.
But when my thoughts go and go like this – I have to step back and remind myself that this ‘challenge’ is one I’m growing into at a time where many people are growing interest as well. The Army published recommendations that reflect their acknowledgement of how great someone who has had an mtbi can look; a study was just done to show that 30% of professional hockey players who are successfully still playing after a concussion scored significantly less on their neuropsych testing in comparison to their baseline; the NFL came together to make their own “standards” for treating concussions – although I wonder what it would take to get a “standard of care” drafted at the base of CDC, FDA, or whatever healthcare gurue would be responsible for the treatment of any head impact…. thinking out loud
I really enjoy coming back to your blog after I’ve had my major weeks away from writing… you have significantly more energy – but just as much fire and passion – and I dig that! And figuring out where I can make a difference will take a while… but I guess that’s OK with me.
I just heard a story of my mom’s friend’s husband’s son… he’s a lawyer and was hit by a drunk driver. He was in so much pain from the whiplash, his neurologist suggested to remove one of his cervical vertebrae – and months afterwards he’s still in incredible pain and panicking as he meets with clients drugged on morphine, and ultimately referring all his clients away from his practice. I hear these stories and have no advice in the moment… but I wish I could do something to create more awareness.
What can we do? Love your ideas and your insight. You say so many things I just haven’t written down yet
PS. The neuropsychologist I’m seeing has been working with concussions for 40+ years. He has a new neurofeedback machine which measures 4 different kinds of waves in your head. They have you sit there at first to make a ‘brain map’ to compare your waves to the general population and it shows where it’s different. I know it’s fairly new science, I’m not sure how much it costs but I’m so hopeful. It might be of interest to you… I’ll swing by with a link if I can.
They found on my brain map that where my head was hit, I have significant delta waves (the ones that are supposed to be present only at your deepest sleep, many ADHD kids have too many delta waves in their frontal lobe – thus they’re low attention is from being ’sleepy’ and stimulants work because it speeds up the slow waves to increase attention); and I have significant beta waves (the ones that cause major anxiety, inability to function with stress, etc). They are trying a LENS therapy with me – a painless electricity sent to try to kick these waves back to ‘normal’ levels. Should only be done with someone experienced and it’s best to go slow….
Needless to say, they gave me a ‘little boost’ three weeks ago to see if it would help – and my vision in my left eye was CRYSTAL CLEAR and that night I could SEE in the dark… it lasted for about a day until I fell back into the major migraine and blurry/frustrating/foggy/overstimulated vision routine. Now they’re starting to give me treatments once a week, going very slow. They suggested that after 12-15 weeks, my circadian rhythm will return, my migraines will dissipate more, my vision will return, I’ll tweak out less and my world will start to settle back to where I had been before the accident. I’m not sure if it’ll be 100% – but man am I a believer after being able to see again for the first time in over a year! My injury is towards the back of my head near my occipital region – it’s the first thing that actually tangibly could show a difference. A visual identifier to help see how I can improve.
I gotta get a good link for you somewhere – it’s freakin’ cool!!! Send me an email and I’ll see if my guy knows anyone who does it in your area. They use it on ADHD, seizures, migraines, but has the most success with mtbi specifically.
OK, wow… should’ve just put that all on my own blog
Hope you’re doing well!
Best,
NEdream
November 16, 2008 at 2:13 pm
brokenbrilliant
Hey – great to hear from you again! Glad you’re enjoying the posts! You should totally post this info on your blog. It sounds like a total breakthrough.
I’m nearing the end of my first full neuropsych evaluation… it’s taken three months longer than expected, due to family emergencies, schedule conflicts, and the fact that my doctor is finding a lot more “up” with me, than they initially expected.
I guess I really do present well!
I’ve been on a tear, for the past couple of days, posting like mad, trying to catch up with myself. Catching up with my sleep and working off my anxiety/energy with lots of posting. I’ve got a whole lot going on, and I find I do better when I write my way through things.
I think, for the time being, that’s where I see myself making a contribution — in my writing and blogging. Man, I have been in so much pain and trauma from neurological/cognitive/behavioral issues, my entire life, it kind of freaks me out to think about it. But I’ve just taken it all in stride, over the years — the bullying, the teasing, the confusion, the winging it, the botched jobs, the screw-ups, the false-starts, the constant search for WTF was up with me… I always thought it was ME that was wrong. I thought it was a character flaw. I thought (and was told) I was sinful, that I wasn’t doing God’s will, that I was rebellious and wicked and disgusting and terrible. So many people called me so many things and took advantage of me, over the course of my life — including family members. The one saving grace, was that my brain didn’t register everything 100%, so I didn’t get the full brunt of it all. But it still sucked. And I’m still dealing with the emotional fallout — which is REALLY interesting, when you’ve got to filter it through the TBI stuff.
Anyway, enough self-pity. My life is what it is. The one way I think I can contribute to the betterment of others and possibly help relieve suffering in this world, is to talk about my life, tell people about what it’s like to deal with TBI stuff, educate them about the symptoms and the after-effects, and share what works for me. I’m just one anonymous person — and I intend to stay that way, because the regular world is not kind to the weak and injured and *especially* the brain-injured… and I want my work and words to have a far-reaching effect, free of the constraints of class and race and sex and (wherever possible) age. I don’t want a lot of attention drawn to me — I just want the knowledge and experience I’ve been privileged to receive to get out there to the widest possible range of people — from TBI survivors to their loved ones and significant others… to doctors who treat us… to therapists who try to help us… to educators who train teachers who will deal with all the kids out there who had a fall or got hit on the head… to the soldiers who sacrificed their very brains for this country… to the first responders, police, EMTs, firefighters who come to our rescue…
It’s probably a tall order for one person… but then, it’s not just me who can do this. There are lots of us out there, dealing with this every day, and people like you and I are in a position — with our blogs, with our passion, with our determination — to help others gain more familiarity and understanding with the conditions we face, and to help them deal with their own difficulties.
So, if you’re looking for a way to help, at this early juncture, I’d say, just write about your life. Just record what happens and let others like you know that it’s possible to come back, that there are treatments and strategies we can use, and that there is hope.
If nothing else, we might be able to offer others hope.
Come to think of it, I should probably put this on your blog, too!
Be well
BrokenBrilliant
November 20, 2008 at 12:38 pm
A reply to a comment that took on a life of its own « Broken Brain - Brilliant Mind
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