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.
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.
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!
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.
Thanks Lurch! All the best to you and your blog! You’re doing very important work, and I wish you all the best!
Have a nice day !
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.
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
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:
Part 2:
Part 3:
Part 4:
Part 5:
All the best,
John
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.
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!
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!
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.
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
Dear Icebreaker in the North Pacific. It is tough getting to the arctic circle. Everybody Else wonders why you want to go there. Backing up and breaking through the ice again again again is hard on your bones and brain.
Hey. Somebody has to introduce frozen orange juice to the Eskimos. Don’t tell them you did it because it was there. Tell them you did it because it is in your heart. Infinitely more brilliant than your brain. Now you know. Hearts and brains can be broken and shine brilliantly.
That’s what light is for. Huh. Shine on brilliantly. Don’t watch too much TV video games. Studies show difficulty maintaining alpha and other indigenous rhythms with eyes locked and the brain running. Sheesh. How do you feel when you lock your keys in the car and leave it running.
Anyone who has ever had a pet endorphin knows how important they are. Inside ourselves we keep the secrets of healing. That’s what life is for. Who needs a miracle medical cure. If we all had the same cure we’d all be the same. Then there would be no way to see that broken brilliant light shine.
Thanks for being so bright. But don’t get too close. I might get blinded. I’m already deaf inside. I’d like to see your words in my brain a little longer.
Hi there!
I wanted to commend you on your courage, to step forward. I also am a corporate professional, who hides behind a mask. I just do not get it, a person who is a cancer survivor is a well accepted, mainstreem hero. Bob Woodruff is also looked upon as a hero of TBI. Professional atheletes and students who suffer ( concussions) which are actually aquired brain injuries are supported.
I am on the National Board of the Brain Injury of America, went back to school at Duke Medical U. to become an intergrative Health Coach Pratitioner, Brain Fitness Certified, Brain Rehabiltaiton Certified with high hopes to assist those like myself.
Yet, in order to do so, I must down play, gloss over and hide my MTBI challenges to be taken as a credable source. Especially around M.D.s. Therefore, I still have not opened a web portal or launched a radio talk show.
Why because of the fear of the labeling.
So I hide behind my day job in business development. Silently, wanting to assist and share knowledge.
Perhaps the medical name of MTBI needs to be changed?
I currently as a hobbie and give back to society: coach Vets, spouces of vets and those who want to learn about alternative safe treatments.
If you would like to collaborate and get any of the information on alternative medical modalities (CAM) as well as centralizing information platrofm. I would enjoy the conversation.
Many Blessings to you and all those on this site. Never Surrender!
P.S. I left my grammar and spelling errors to illistrate that we with MTBI are not perfect and have different challenges. I compensate by usually having a person read over all business corrispondance.
Thanks so much for writing – what an amazing service you’re providing.
I hear you about the labeling. It’s why I keep my identity concealed. In the professional world, I don’t have much hope of people understanding or extending themselves to help me out in those instances when I need it, so I keep all of this to myself. Even with family members, it is difficult. But we do what we can, I suppose…
The world needs more people like you. Please do stop by again and keep writing. And if you wish to share your story, that would be great.
Thanks again and God bless.
BB
This is craziness. thanks.
Hey there. I’m trying to come around a bit and “communicate.” I responded to you and also added you to my Blogroll–just so you know. *grin*
Also about the VNS…heh. Remarked about that over at my pad. Maybe we actually do have the non-invasive in Canada? I’m seeing my Neuro soon so he and I can have a chuckle about my wacky head and some surgery.
You and I should review (or you can read about it), what happened after my tonic-clonic. I became an epileptic rat. I pretty much found that was the only place they discovered it…not so much in humans? Thermoregulation issues. Unreal. I don’t even know if I have a hypothalamus anymore.
Take care,
PA
Hey -
I’ve added you to my blogroll, too.
Non-invasive VNS? Not sure there is such a thing, mechanically speaking. Believe the only official way of doing it is to implant something under your skin and then give you a magnet to wave in front of it, in case things start to …. turn. They’re recommending it for people who are depressed, as well.
Why have a $30,000 (US) operation, when you can breathe deeply and stimulate your vagus nerve? There’s not much money in deep, controlled breathing, I suppose.
I’m not sure what you’re talking about with the thermoregulation and “rat” reference? Couldn’t find it in your blog — probably looking in the wrong place. Refresh my memory, if you will…
Anyway, thanks for the link and good luck!
Don’t forget to breathe…
BB
Thanks for the reciprocity.
Perhaps an email is in order to try and “explain” things–for both the non-invasive VNS (which was vague in reference at best), and my Thermoregulation jazz.
My “Seizures” Category is really big and when I was writing about, I was post-ictal and sick and out of my mind for an entire month! Oh, dear!
You don’t forget to breathe, too. And not so much to hurt your muscles…
Email is probably a good idea — lemme know
Cheers BB
I just found my way to your website and so far I am delighted with what I have found. In a neurological nutshell, that part of my life includes a fractured back in a high school lacrosse game which would effect my neurological condition years later, two severe car accidents (one which briefly left me in a “coma like” state and the other with post concussive syndrome), a parietal lobe menigioma (a brain tumor) resection, a brainstem glioma discovered a year later (with a grim prognosis), a few years later a cerebro spinal fluid cyst developed in my brainstem and I needed the first of two shunt placements to slowly drain the fluid, but not stop the flow or another cyst would likely develop elsewhere, a few years ago I had an ischemic stoke and I lost my vision in one eye and the hearing in one ear.
All that said, with many details missing, I have not just been looking for a site about TBI and ABI (I am a member of both clubs) for quite some time. Just like a GPS system in your car, one that “recalculates” when it encounters a roadblock on the path it was originally taking, “Recalculating” is a concept that describes what I have been forced to do in cognitive terms so many times and it is one in which my friends can quickly grasp a nebulous concept and integrate it into a broader understanding of my “invisible disability”. Complaining about the deck of cards one has been handed gets so very old, quickly. “Recalculating” emotions, cognitive retraining, social interactions etc. seems a far more productive use of ones time here on earth. Finding your site so far seems to offer a plethora of “recalculating” information that I will be referencing for some time!
“Thanks much!”
Alex
Thanks Alex and welcome.
What a ‘ride’ you’ve been on — pretty amazing. I really appreciate what you say about “recalculating” — I’ve been thinking about my life in those terms a bit, lately, too, tho’ I haven’t got a GPS.
I tend to think of it like heading down a road in the jungle, and finding a tree has fallen across my path — a very large tree, one that my machete won’t cut through. So I have to take the long way ’round and blaze a new trail for myself.
Thanks again — I hope to hear more from you in the future.
BB
Thank you, thank you, thank you! You are so right in everything you say. I had a global brain injury over 3 years ago, and was given grim chances of much recovery. I was seriously mentally impaired., could barely talk (think drunken slur), and somewhat physically impaired. I could live independently, but just emptying the dishwasher was an accomplishment and made for a good day.
Western medicine was of absolutely NO help and had nothing to offer me. As my mental capabilities improved, I started doing my own research and deciding on my own therapy. Through the miracle of neuroplasticity and such practices as neurofeedback, hyperbaric oxygen therapy, acupuncture, cranial sacral massage, hypercapnia, visualization, meditation, cross lateral movement, bikram yoga, daily cardiovascular exercise and more, I have made a remarkable recovery and continue to improve. Much of it I have done on my own at home. You do not have to go to therapy. I still do brain training and manual dexterity exercises and cardiovascular exercise and my own speech and more daily. It is up to YOU not some medical staff.
Read more about my experience at my blog http://thebestbrainpossible.blogspot.com. Thank you for sharing your information and being an inspiration. Keep going and keep working at it every day. It only gets better.
Am I being stupid? I do not see how to subscribe or follow other than RSS feed. Can I have this blog sent to my email? I am sure I can somehow. Sorry….brain injury.
Nope, you’re not being stupid – I am
I just added a “subscribe to this blog” widget in the left column, so now you can click a button and subscribe.
Not sure why that never occurred to me before.
Sorry… as you said… brain injury
Thanks for writing
BB
Thanks for writing Debbie -
I am checking out your blog and finding it very encouraging. It really is a wonder, what we manage to come through.
Keep up the great work and keep talking about your amazing recovery.
Cheers
BB
HI BB! I had visited your blog before my computer issue days and lost the link to it! (just found it again today!) If you dont mind I will add you to my “hero list’ on my blog. I am a caregiver to 3 survivors… my son, my husband and dad.
My biggest struggle is with people who look at our family and dont get that there are still major daily struggles. And like genuinesunshine said ‘a person who is a cancer survivor is a well accepted, mainstreem hero. Bob Woodruff is also looked upon as a hero of TBI. Professional atheletes and students who suffer ( concussions) which are actually aquired brain injuries are supported.’ My son and hubby are severe survivors but most ppl dont understand what we go thru because they dont look “different” or have ‘publicly visible medical routines’ such as chemotherapy. There are no casserole brigades when we are having a hard day, there are no offers to help out with the rest of the family when my survivors are not on top of their game… It is hard to share with people the issues we deal with because no one can see them physically. There is no ‘medical timeline’ to follow or to prepare for…
Thank you for your writings!
Hi Jodi -
Thanks for your words, and I don’t mind at all if you add me to your ‘hero list’
It really is a challenge handling the day to day issues, without public support. The more I think about it, the more important it seems to me that we see our experiences acknowledged and mirrored by others. Hearing others talk about the same hidden difficulties you have, has a way of relieving a lot of pressure. It’s easy to feel like you’re losing your mind, when you aren’t feeling recognized, and people around you are constantly saying that “you look fine”. I think that people sometimes think that is supportive, but ignoring and minimizing the things we have to overcome just makes things harder, I think.
Good luck with all your work, and thank you for sticking by your 3 survivors. Hang in there!
Cheers
BB
The human body is mind boggling. Look at all of the components inside one body and try to figure out how it possibly all works. What’s even more cool is that we have nearly two of everything in case something shuts down. This being said, it is still vital to exercise and to eat right. Just because we have two of everything doesn’t mean we should abuse it!
Just wondering BB if you would mind me posting your blog on our FB page Canadians with Traumatic Brain Injuries. I think a lot of what you write may be of great interest to others!
I would post the link to your home page…
Thanks.
Sure Jodi – I would be honored for the mention. I’m glad I can be of help!
BB
Excellent site for traumatic brain injury. I suffered many TBI, and when given a proper history in our healthcare system I have been discriminated against. Actually, no one believed me. Hence I was not treated with a subarachnoid hemorrhage and many physical complications that go along with that…the one injury I did not recover from. Anything that happened after the subarachnoid hemorrhage was blamed on pre-existing conditions that were never there to begin with. I probably lived because I wasn’t treated! Who is to say that the treatment given is the correct treatment? If it weren’t for my strong sense of well being and healthy choices and exercise I would never have made it through this last event 20 years ago. But, nothing prior to this was debilitating, but then again they didn’t include subarachnoid hemorrhage brain and spinal cord injury either. I have a strong body…and a strong mind (I was just told). So being a healthcare professional I would not encourage individuals living with TBI to reveal everything in a health history. It’s the same as psychiatric conditions. No one understands the condition, so it’s a stigma. One needs to be treated and not labeled. The information is not used to help, as I once thought. It can be more harmful then helpful. Don’t get fooled into revealing too much. Trust yourself and protect yourself.
True, true, true. I have always felt it was a mistake to reveal too much about my past injuries. Unfortunately, I’ve had to “go on the record” to get help, because of insurance issues. And I’ve got an official diagnosis of late-effects from prior traumatic brain injury. At the time I had that diagnosis and “went on the record” I thought it would help, but you’re right — in some ways it has worked against me.
It is very difficult to know what to do. You need help, and you need to disclose some things to get help, but at the same time, the people who claim to help … often don’t. Or they can’t.
It can be pretty intimidating, dealing with everything. It’s just too bad that so many of us find out — much later — that we would have been better off relying on ourselves all along.
The best we can do, is spread the word that recovery is possible, and that things can get better.
I am working on a project for Traumatic Brain Injury Awareness month in March and we are asking people to share their stories in video form for our YouTube Channel as well as join us on Facebook for discussion. Would this be something you are willing to do? And could you pass the information along to your readers? If so, please email me!
Thank you,
Michele
Thanks Michele,
I probably will not be able to participate, however I’ll be happy to post info on this blog so others can learn about it and possibly participate. Will that be okay?
Thanks again
BB
BB- someone just sent me your blog, interesting. I work with TBI within the military and much of what you say is very on. There is a lot of support out there–if you are in the right place and have had the right people see you–as you have noted–it can be quite a path to get to where someone listens and acts other than just treating symptoms–the needs are more holistic than that. The wonderful thing about TBI these days is that there is so much more media focus on it with sports, and to some extent the military impact that people are taking it more seriously.
The invisibility of the afflection is what I believe is the hardest thing about it. It is like chronic pain, the only person that really knows what is going on is the person experiencing it. A couple things–mTBI is not used so much anymore–TBI is preferred. Also, the difference between a definition of concussion and TBI are very close. Take a peek at the CDC and Wikipedia–and that is why the people working with this in many cases use the terms interchangeably. Neither requires loss of consciousness. A tool called the “Glasgow Coma Score” is often used at time of the injury/insult to determine severity by looking at and measuring events after the insult/injury.
I don’t know if you have looked at the Brain Injury Association USA (www.biausa,org)–they have chapters in most states, or at http://www.DVBIC.org –a congressionally funded group that I feel is much like a wikipedia regarding TBI–has a lot of resources, addresses for support groups that address couple’s needs, reintegration into community/society and other beneficial information. They have a lot of downloadable information. Though mainly directed to the military–I think it is a very helpful site., a third is http://www.cdc.gov/traumatic brain injury.
Nice to see there is someone out there trying to reach others that suffer and have had to work their way through the carepathways to get appropriate health.
Hi Sue,
Thanks for writing, and thanks for the great resources, too. I am familiar with some of them — the BIAA, for instance — but others I have not heard of. I think we’ve gotten a lot better about finding/pointing people to resources. The internet certainly helps.
That’s interesting about “mTBI” not being used much. It does seem like an academic distinction — mild, moderate, severe — the initial is often a terrible predictor of the long-term effects, so getting rid of the “mild” makes sense to me.
Thanks again for the info and the tips.
BB
Hi bb, brilliant site, thanks so much. Re ‘mild,’ I liked a comment in a new York Times article” “there is no such thing as a mild brain injury.’ Also, for some people a mild brain injury can cause severe effects in ones life. the location of the injury is relevant. I agree with what you said at the top of this page re there being an information system problem. however, you are so right about trying tog et help and finding people dont or cant help you and sometimes screw you up even more! Ive found the neuropsychologists are the only ones who really know, but they dont do practical help for our daily lives. Watching the head of CNS rehablitation talking to gthe senate committee on brain injury recently, that gives quite a good overview. (I hope this link works http://republicans.energycommerce.house.gov/Media/file/Hearings/Health/20120319/HHRG-112-IF14-Wstate-AshelyM-20120319.pdf . Otherwise google Mark Ashley text speech senate committee brain injury, or something like that.)
Perhaps it is not always the lack of an information system, sometimes I am beginning to realise, they dont really know. and so we continue to learn, at the pace of a glacier, by trial and error, and we have our victories and we become more confident in what we know. Like you I have constantly worked hard to get educated on my deficits to help me understand and find ways around them, There is constantly discouragement, I suspect because so many of the people who help and ‘advise,’ in fact know very little themselves.
Hi Jen, sorry for not responding sooner – things have been pretty busy, but I’ll try to respond. Thanks for the link to the proceedings. It does work
I think you’re right about people just not knowing – the thing that seems to make it harder is that many times they also seem to think they DO know, so they do not make the effort to find out more or question what they believe is true.
It’s really unfortunate, but there it is.
This is an awesome blog! Since finding your blog several months ago, I have appreciated your insights and candid discussions about living with TBI. Just came across your Annotated Bibliography, Chapters, and Articles and have made a copy to include in my growing collection of TBI information. Saw that you had responded on the GiveBack LA (www.givebackla.com) website awhile back. Larry Schutz is doing some awesome work on behalf of TBI survivors. Providing free access to his wealth of knowledge as a neuropsychologist and rehabilitation expert is an awesome gift to the brain-injured community and their families, partners, and friends..
Thanks! And thanks for writing. Glad you’re finding the information useful. I haven’t checked in on GiveBack LA for a while – now that you mention it, I really should. It really is an amazing gift to everyone. GiveBack (Orlando) made a huge difference in my early recovery — just helping me see that I was not in an impossible situation, and others were/are dealing with this successfully each and every day… that made all the difference.
Have a great day and hope to see some more of your feedback.
I find that my redundant use of an adjective increases with my level of tiredness! : )
Have you written about your experiences at GiveBack Orlando on this site? I have read “Head Injury Rehabilitation in Real Life” in which Larry Schutz relates both successful and unsuccessful rehabilitation attempts, why it works for some and does not for others. Dr. Claudia Osborn’s personal account of brain injury and rehabilitation in “Over My Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out” helped me understand my own injuries post TBI. Sometimes our desires to return to what we were pre-injury are transformed into into opportunities post-injury that we may well have missed otherwise.
I was writing about reading them, when I first came across them. I have actually never been directly involved with them, but I was lucky enough to chance on their materials. I will need to check out “Head Injury Rehabilitation in Real Life” — anything from Larry Schutz appeals to me. Thanks for the tip!