Please Note: I am not a doctor. I do not have medical qualifications. I do not even have a completed college degree (only after I realized how deeply and invisibly TBI had affected me my entire life, could I explain why I attended 4 years of college, albeit sporadically, but couldn’t manage to get a degree). I am simply one individual who has learned how to live very effectively and even happily with the after-effects of multiple mild traumatic brain injuries. All I can offer is my own insight and experience to others like me, in hopes that it will help them live their lives more fully and with greater joy and satisfaction. If you believe you have had a TBI, please see your doctor and/or another qualified medical professional.
About the Blogger
I am a long-term (mild) Traumatic Brain Injury (mTBI or TBI) survivor who has been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications for 35 of my 43 years. I’ve done it so well, in fact, that virtually nobody knows that I sustained injuries at age 7… and 8… and 14 and 16 and 17 and 22 and 24 and 30 and 39… and the folks who do know, haven’t fully realized just how it’s impacted my life. (You can see my catalog of injuries that I can remember here)
I have a pretty active life, overall, provided that a lot of the activity is online and relating to my own hobbies and interests: writing, drawing, painting, research (esp. TBI and neurodiversity), music, and more. I am the Executive Producer of a broadcast program that goes out weekly across the nation, and internationally. That’s one of the reasons I do not speak with a great deal of specificity about my personal life and the people in it — I do not wish to endanger either my public persona (we all artificially construct our public personas, after a fashion — pretty much everybody knows this, or else they’re deluding themselves) or compromise the integrity and validity and acceptance of the programming I help to create each week. There’s just too much bias about TBI out there, and I don’t feel like dealing with prejudice, when I can just get my work done.
I make a point of hiding my “disability” from others — both because I don’t want to be stigmatized, and I don’t want to be pitied or treated like an invalid. It’s really a point of pride with me, that almost nobody knows I have had multiple mTBIs — unless I’ve told them. And when I’ve told them, they frankly didn’t believe me at first.
My mTBIs have impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, now, 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.
About this Blog
My mission with this blog is:
- To reach out to the millions of individuals (5.8 million, I’ve heard) who have sustained a TBI, along with their friends, family, and co-workers, to help them better understand traumatic brain injury information from a “lay person’s” point of view. There is a vast sea of medical research and clinical findings available about TBI, not to mention studies, facts, and tons of websites, but it’s often confusing and can be very disorienting. Having a personal “take” on all of it, might just help to humanize this scientific information and make it accessible to the people who need it most — the folks who are living each day with the after-effects of a traumatic brain injury. I hope that in reading this blog, they may be better informed about TBI and quit being so hard on themselves and others, quit being so frightened of this manageable condition, end the silence around cognitive-behavioral issues that are neuro-physiological in nature (not due to some “character flaw”).
- To share my personal experiences with other TBI survivors and their families, to help them overcome the feelings they may have of wretched brokenness, to let them know they are not alone and help them see that a broken brain is not the end of the story, so long as your whole body-mind-heart-spirit “information-processing system” is intact. There is more to us than what’s between our ears, and we can live full and satisfying lives, even if they are turned upside-down by forces beyond our neurological control.
- To relate my experiences to the psychotherapists of the world, who may be chasing the wrong demons in their counseling sessions, trying to fix “psychological” issues of TBI survivors which are actually neuro-physiological in nature, and help these therapists address the very real emotional/cognitive/behavioral/social issues which plague TBI survivors, often in secret, often hidden behind thick, high walls of shame, fear, guilt, and anxiety. There is a lot to be done in this domain, but folks need to understand the real issues we TBI survivors face, before they embark on diagnostic and treatment courses of action that serve mainly to frustrate and discourage us, and make us feel even more screwed up than we really are.
- To assist our men and women in uniform, returning from active duty, who have sustained a TBI in service to this great country of ours, and who are left out in the cold by a medical and psychotherapeutic establishment that often does not understand or fully appreciate their challenges and needs as TBI survivors.
- To celebrate my successful long-term survival from a TBI and show others how I did it… and how I continue to do it, so they can have hope and, in the words of Winston Churchill, “Never, ever, ever give up!”
My Confidentiality/Privacy Policy
The world is not often friendly to those of us dealing with TBI — either as survivors ourselves, or as family/friends of survivors. The information we reveal about our own situations may be used against us in professional, social, and legal situations, and it can be used to disqualify us from participating fully in the world. This is a damned shame and fundamentally unfair and unjust, but that’s just how it too often is.
In order to keep the identities of people (including myself) safe and sound, and to not let personal details get in the way of the over-arching mission of this blog to educate and offer hope and resources to others like me, I tend to change the personal details of the people I talk about — this includes myself, my family, my friends, my coworkers, my doctors, my therapists, my inner and outer circle, pretty much anyone and everyone I encounter. I may (or may not) change their gender, their age, their place in my life, the circumstances in which I interact with them, etc. I do this NOT because I am ashamed of myself or what I’m going through or the difficulties and challenges I face each day. I do it because this educational/outreach work is more important than any personal opinions, details, or other private particulars. And it needs to be done.
So many of us are suffering in silence, feeling alone and isolated, and the sensitivity of our own confidential situations can work against sharing information. That should not be. We have a tool to overcome the boundaries and barriers between us — that tool, ironically, is total and complete personal confidentiality and the ability to disguise or change sensitive personal information in the online world. By revealing less about ourselves and what sets us apart from others, we have the chance to reveal more about what brings us together.
I do not want the sensitivity of personal details to prevent me from passing along vital information which may be of use to others — Principles Before Personalities, you might say. And so, I take some liberties with how I portray my personal circle, as well as myself.
Above all, I seek the Truth about TBI — my own, and TBI’s in general.
Even in the absence of intimate personal details.
Perhaps because of the absence of personal personal details.
13 comments
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January 3, 2008 at 3:18 am
Tony Neria
I’ve linked to your blog under my “TBI Blogs” section. I’m tracking my son-in-laws recovery from TBI after he was injuried (severely) by an IED in Iraq. Good luck…you’ve made a great start.
January 4, 2008 at 10:48 am
brokenbrilliant
Thanks Tony –
I found your blog over at http://tneria01.wordpress.com/, and I’m linking to it from this one, as well. The more information we can spread around about TBI and how to not only survive it, but thrive in the process, the better!
January 5, 2008 at 2:59 pm
Lurch
Thank you for visiting my blog. I found the link about your inability to comment through technorati, and promoted your comment. I hope a few of my readers visit your corner of the universe, and stay to learn.
My heartfelt wishes for your continued success in fighting this injury.
January 5, 2008 at 3:13 pm
brokenbrilliant
Thanks Lurch! All the best to you and your blog! You’re doing very important work, and I wish you all the best!
February 27, 2008 at 6:49 pm
bibomedia
Have a nice day !
May 20, 2008 at 5:48 pm
scaredwife
I am so happy to find this blog. I am the wife of a mtbi survivor and have been dealing with this issue for all of our marriage. It seems to be getting worse. One of the worst issues we deal with is the extreme temper. I try to be understanding but it is SO hard not to take things personally. I feel that our marriage is falling apart and worry for my children. They are seeing these flare ups and it is so hard to explain to them that it is not normal. I think because he is so frustrated, he takes it out on me with verbal abuse, personal attacks and a lot of yelling. I feel conflicted – wanting to show my daughters that they should never let a man treat them this way but also to have compassion for their father. Please continue to write more – I hope it can help me in my understanding.
September 28, 2008 at 6:41 pm
brokenbrilliant
Hi Scaredwife –
I really feel for you and your kids, and I also feel for your husband, who may be pretty confused about what’s going on with him, and unable to control his behavior, but is afraid to admit what’s going on with him. Having a TBI can really scramble things, and in my experience, not knowing just what’s going on in your world can heighten sensitivities and make lots of things worse that are already bad to begin with.
One of the big problems I’ve had is, just not knowing about my limitations. I cannot tell you how many times I’ve done things that I would not have done, had I been aware of my cognitive processing problems. I would not have taken certain jobs, I would not have gone into certain social situations, I would not have tried to go it alone in many tough situations which eventually involved lawyers and police (I survived unscathed, I’m happy to report). I’m not trying to frighten you — my adventures have made me smarter, but they also were ill-advised. I just didn’t know my own limits. And I wasn’t willing to accept them.
This came (at least in part) from a lifetime of fearing being treated differently because of some mysterious reason I couldn’t put my finger on. I always had the feeling that others were either a little afraid of me or felt a little sorry for me or they were coddling me and trying to treat me like a “retard”. I fought against that tooth and nail my entire life, and in the process I took some risks I really should not have.
I think things might have been different, had the people closest to me understood about TBI and been able to adjust to the affect it had on me. Knowledge goes a long way, and when it’s coupled with experience and insight and patience, it can become wisdom. If there were one thing I could say to you (and anyone who’s living with a TBI survivor, recent or otherwise) that I think would have helped me as a TBI survivor, it would be:
1. Learn everything you can about the one(s) you love with TBI. Knowledge is the best weapon in what is often a war. And being armed with good knowledge and information — as well as a support network — enables you to be strong and solid for the ones who need your support the most.
2. Please be patient and don’t assume that we “walking wounded” are intentionally trying to be difficult. Sometimes we have no clue why we are doing what we are doing, and our minds can tell us that something completely different is happening, than what really is. This can be very disorienting, and it can trigger panic and anxiety and all sorts of adrenaline rushes that make us act impulsively — in ways that aren’t always helpful. BUT NO MATTER WHAT, VIOLENCE IS NEVER AN ACCEPTABLE WAY OF INTERACTING WITH THE ONES WE LOVE. If a TBI survivor in your (or someone you know’s) life is acting out violently, you/they need to seek help for this — and address it appropriately, taking the TBI into consideration.
3. Inside this often impassive exterior is someone who is hurting. We can spend so much time trying to mask the hurt, that we end up looking like “blocks of wood”. Or the hurt can be so deep that it keeps us from fully knowing *what* we are feeling. Or that hurt can sometimes come out in scary ways – it can sometimes look like we’re angry, it can sometimes look like we’re intentionally being aggressive — but it can be difficult for us to modulate our expressions. In situations like these, what works best for me is a simple gentle (but firm) reminder of how I *should* be acting, not how I shouldn’t be behaving. Being shamed for not exhibiting the “right” reaction is not helpful for people like me.
4. Things change over time. The effects of TBI may heal, or they may not, or they may partially resolve. But things will change. Stay rested, stay hopeful, stay strong. The skills we develop in dealing with TBI have a way of helping us do a better job of dealing with the rest of the world, as well.
5. We always have a choice about what we can do in response to our life situations, and we always have the right to say “NO” to unhealthy and unsafe situations. That goes for TBI survivors, as well as their loved ones. Your partner has the right to say “No, I don’t want to go out to dinner with ____ tonight,” if he is over-tired or needs some downtime to regain his balance. And you have the right to say, “No, I don’t want to be talked to in that way,” if you feel like he’s being unkind or insensitive (but may not realize it).
We live in a society that unfortunately does not want us to take really good care of ourselves. It makes a lot of money off us NOT taking good care of ourselves. Our stores are full of non-nutritious foods, our schedules are full of busy-ness, our workplaces (if we’re lucky enough to have a job, these days) are hectic, and our main passtime — television and movies — are specifically designed to trigger parts of our brain that make us emotionally volatile. (Advertisers and marketers use lost of color and flashing lights and sound to trigger our emotional centers and prompt us to buy-buy-buy, which gets that part of our brains all worked up — and for a TBI survivor and their family, that can get folks more agitated than is helpful). And when we are run down, we’re sold medicines and other things that are meant to make us feel better for the short term… but have long-term consequences. I guess my point is really that the average person has to work pretty hard at keeping well and healthy — and when TBI is involved, there’s even more work involved.
But we have every right to say “NO” to things that do not serve us, that make us less healthy, that stress us out… even if everyone else is doing them. And we have every right to say “YES” to the things that do help us — reliable health information, strong support, lots of rest, good nutritious food, vitamins, exercise, community, family, loved-ones, work that gives us dignity not pity, a slower pace, a more thoughtful and reflective way of life, board/card games instead of television, crossword and jigsaw puzzles, travel, hobbies, making art(!)… those things are all available to us, and we have every right to claim them.
Best of luck to you!
BB
November 21, 2008 at 1:00 pm
ErasmusBlues
Hey there BB, I am a so-called mild TBI survivor since Sept 2005. My son Chris (21) filmed this talk I’ve given to a bunch of people — medical professionals, case managers, and grad students in training for Speech-Language Pathology — called “You Look Great!” — Inside a TBI. It’s more or less the starting point for the book I’m writing of the same title.
He has posted the 1st 5 parts on YouTube. Part 6, the finale, should go up shortly. We’ve received wonderful and encouraging feedback from survivors and their spouses and caregivers about how the video helps them describe what they’re going through too.
Part 1:
http://www.youtube.com/watch?v=x9Xso4qGdlI
Part 2:
http://www.youtube.com/watch?v=qPNd_oXx4Ec
Part 3:
http://www.youtube.com/watch?v=I-1q1bfeH20
Part 4:
http://www.youtube.com/watch?v=hvLYuz8i9Kk
Part 5:
http://www.youtube.com/watch?v=JpFJMgyWRvM
All the best,
John
January 5, 2009 at 7:30 pm
Michael
Was wondering if websites like these ( Brain Games ) help with improving brain functions after having mTBI? I keep reading how they are good for everyday life and not just mTBI but wanted to get peoples opinion.
May 4, 2009 at 6:13 pm
Angela Delaney
THERE IS HELP THAT HAS RETURNED SOME PEOPLE TO TOTAL FUNCTIONING!! Of course, just as in life, there are no guarantees. Dr. Mary Lee Esty has developed an incredible treatment modality for PTSD and TBI, along with fibromyalgia and autism!! I read about her in the Washingtonian magazine here in Virginia in 2005. The article was about how she helped a teen-aged boy and about the author’s experience with her improving her memory. So, I immediately made an appointment. I have been shocked at the results! I injured my head again, and went back in February. After a discussion with her, we decided to do her protocol for PTSD – with AMAZING results! My memory is back to being terrific – including remembering my phone number from when I was a senior in high school – 40 years ago!!! And my depression has lifted enormously AND my anxiety has become minimal -after my mother dying AND my significant being treated for cancer!!! AND my ADD has improved tremendously!!!!! I can’t believe how different my life is in such a short time!!! AND all for less than $2,000! Although, I would have paid anything for these results!!!
I have suffered depression and anxiety for most of my life – including Seasonal Affective Disorder. I was on the highest dose of two antidepressants and have cut them down by 2/3!! So, I think, no KNOW, that Dr. Esty is a miracle worker!!!
IMPORTANT INFO: There are at least two types of neurofeedback – the other one I learned about helps you manage brain waves. What she does is entirely different. The best way to learn about her, her modality and results is on her Website:
http://www.neurotherapycenters.com/def_stories.htm
After my tremendous success, I really want to get the word out that THERE IS TREMENDOUS HELP AVAILABLE!! In fact, the US Army has been so impressed with her results on two of their employees that they have asked her to propose a study that they will fund.
By the way, the biggest difficulty in performing any studies for PTSD is that it is very difficult to find participants!! So, if you know any veterans from Iraq or Afghanistan who could do treatment for 10 weeks or so in Bethesda, MD – please send them my way!!
But if you have any questions for me – I will be happy to answer them as best I can!!
Thanks!
May 7, 2009 at 11:02 am
brokenbrilliant
That’s pretty amazing. I am definitely checking it out. I’m going to be seeing my neuropsych this afternoon, and I’ll take this info to them to see what they have to say about it.
Thanks a million for the info!
November 15, 2009 at 12:45 am
Lon JonLuke
BBrilliant this is a useful blog. So many others are there just to say “gee that’s too bad” you seem to be out looking for information to pass along. I suffered a TBI in high school when people (not even doctors) knew what it was. Riding fast on my bicycle I crashed into the sidewalk and woke to a doctor shooting painkiller into my face. He stopped counting after fifty stitches. I healed went on with life and no one noticed that I was different. Until after I graduated from college went through corporate America and was found on a sidewalk with a TBI no one could miss. I am told I was probably mugged. Now after countless brain surgeries, a truck load of drugs, and a VNS I am diagnosed with neurosarcoidosis. They don’t know how to cure it but with the latest drugs they can keep me sedated down to one seizure a month instead of four a day. I am going to find out how the brain works and you can help.
November 15, 2009 at 4:23 pm
brokenbrilliant
Hey Lon -
Thanks and welcome. You’re absolutely right, that I’m out looking for information to pass along. I have spent way too many years struggling (often without realizing to what extent I was having trouble), only to be told I was either lazy or stupid or I wasn’t trying hard enough. If only they knew!
Anyway, that’s all water under the bridge, and I now have access to some great support folks who help me with getting the right information. I’ve read a little bit about neurosarcoidosis, and it sounds like quite a trip. One seizure a month instead of four a day is a good thing.
By all means, do find out how the brain works. I picked up a copy of Netter’s Atlas of Human Anatomy and I have been studying it. I believe there is also a Netter’s Neurology, which I may get this holiday season, but I like to have a full view of the whole human body, so I went with the whole atlas. It’s fascinating.
Along my path, I have found a lot of folks — especially experts — who have discouraged me from digging too deeply into my own condition and the medical literature about it. I appreciate their wishes to protect me from confusing facts which I may or may not understand, but I have a keen and abiding need to know as much as I can learn, and to understand the things that directly impact my life, so their discouragements have been more annoyances than hurdles for me.
Knowledge is power, and the more you know about your own condition, the better you’ll be able to advocate for yourself. Good luck with your quest. It’s well worth it.
BB