How many have been compared to someone who have a visible injury? “Look how much someone can accomplish after they have lost limbs or have some other visible physical injuries.” Is the frustration with brain injury justifiable or is the brain injury minimized that it is not helpful to recovery? Many with brain and spinal cord injury have altered sensations throughout their entire body and nothing works the same. Just because they are attached, doesn’t mean they function well! Most everyone would rather have a well-functioning mind and body, than a good-looking mind and body!
What happens when the master computer of one’s entire body is damaged and continues to go haywire daily and their is no visible physical evidence? Is life predictability easier to deal with than daily unpredictability?
Below one will describe life from one person’s perspective after two accidents that caused a traumatic amputation of an extremity and later a brain injury. Here I will refer to a young woman at the age of 37 traveling to work but stopped to help another motorist stranded on icy roadways in the midst of winter January, 1990.
Her life changed in a fraction of a second, as everyone does when they have physical injury. There is NO secondary gain from physical injury! Who likes pain and suffering?
In 1990, a female nurse stopped to help another disabled vehicle on an interstate highway. While exiting her vehicle she was struck by another vehicle. She had a complete traumatic above-the-knee amputation of her left leg at the scene.
English: 2nd day post op after amputation of left leg due to liposarcoma (Photo credit: Wikipedia)
Her body was covered and no one thought to tourniquet the stump of her leg to stop bleeding. Apparently a gruesome scene! The weather was cold, roads were icy, and these factored into her survival story.
In addition, to a traumatic amputation of her lower extremity, she was diagnosed with anoxic encephalopathy. In her case, anoxic encephalopathy is the lack of oxygen to the brain due to significant blood loss. This is also considered a brain injury secondary to the traumatic amputation.
She survived an event that few do. She had a minute or unmeasurable amount of blood left in her body when transported to the trauma center. It was simply amazing that she survived! She reports that knowledge and struggle for survival was just beginning when she regained consciousness months later. In reality, her body was fighting for basic survival while she laid unconscious in the intensive care unit.
She recalls her rehabilitation focusing primarily on amputation and other physical injuries.
Treatment focused on:
- Self-esteem and loss of leg/limb
- Preparing for prosthesis
- Learning to walk again
- Physical therapy
- Occupational therapy
- Speech therapy
- Cognitive therapy
She has no recall about a brain injury. She stated “if she endured a brain injury she was not educated about it.” Her recall is simple: take care of the visible injury and one will be better. All her inpatient treatment focused on the loss of her lower extremity and other physical injuries. There was no mention of brain injury and no patient and family education for brain injury.
After a 5 month hospital stay, two years of healing from extensive physical injuries and fitting for her prosthesis she returned to work as an intensive care registered nurse. She found that most people and places accommodated her special needs.
The most difficult transition was carrying around a leg on a short stump weighing at least 50 pounds. Just this thought is exhausting! People complain about carrying around a 10 pound bag of potatoes with two hands. Imagine how difficult this would be!
Long-term lower extremity amputation
- Prosthesis fitting
- Returned to work as ICU nurse
- Accommodate special needs
- Difficulty with weight of prosthesis
- Skin problems, irritations and infections on stump
- Change in Sense of Self: Self-confidence, Self-esteem, and sometimes Selfishness!
A few years later she was in a minor car accident that she reports more devastating than all her physical injuries combined. We talk of all the injuries Veteran’s endure and wonder how they are treated. All injuries are different and significant! It’s the superficial society that is harsh!
She was able to drive without difficulty since the right leg and right foot is needed for braking and gas. This injury did not compromise her ability to drive. Her mild traumatic brain injury (mTBI) was life altering in a way no one expected and especially this nurse. Certainly, not in a way she expected! Nothing could have prepared her for this injury. Education after the injury would have been helpful.
If you could change one thing about treatment, rehabilitation process and an injury what would that be? Why?
Related articles
- Caregivers of U.S. veterans bear scars of war (cbsnews.com)
- Amputations | eLocal (elocallawyers.com)
- Study Links Single Occurrence of Traumatic Brain Injury to Alzheimer’s (prweb.com)
- An Amputee’s Hope, A Soldier’s Mission (ptsdandcombat.com)
- New Technology Helping To Treat Veteran Brain Injuries (pittsburgh.cbslocal.com)
braininjuryselfrehabilitation 
buckwheatsrisk
November 23, 2012 at 12:16 am
more support after for a longer haul. no one discussed the emotional side of having my bladder removed
brain injury self rehabilitation (BISR)
November 23, 2012 at 8:32 am
Bladder removal is a major surgical procedure with lasting consequences. What I’m finding is that once a procedure or injury is treated, there is no ongoing support. Ongoing support is important as life has many chapters and changes. It’s expected one knows everything and will know exactly what to do. It’s quite the opposite. I believe every health system should have support for all procedures and injuries on an ongoing basis…but that’s the ideal. Why do we settle for anything less when it comes to our life?
buckwheatsrisk
November 23, 2012 at 12:52 pm
yes i have never met another single person with my situation, i’ve met other’s with ostomies but not my type…it has robbed a good portion of my life this.
Tanveer Rauf
November 23, 2012 at 1:34 pm
Edie dear you are rendering great service to us all. thank you for sharing such valuable info
brain injury self rehabilitation (BISR)
November 24, 2012 at 8:51 pm
If there is a particular topic you are interested in please let me know. Thank you for your kind comments. Take care and stay safe.
Three Well Beings
November 25, 2012 at 12:19 am
I’m in awe that people keep going under so much loss of physical capability. There are no words!
brain injury self rehabilitation (BISR)
November 25, 2012 at 6:51 am
It happens far more than others realize!
brokenbrilliant
November 25, 2012 at 10:37 am
Wow, what an amazing story – what struck me was that her later “more minor” injury was more devastating than her more obviously traumatic ordeal. It really is amazing she is alive. At the same time, having your brain impacted — and having it impacted in a less-than-obvious way (just a little car accident) — makes things that much more difficult.
I think this is because with brain injuries we require more effort to get things done, but we
A) don’t realize it,
B) don’t believe it, even if we do realize it,
C) have a hard time judging by ourselves what it is we need to do, to adjust,
D) have a hard time getting support from others who cannot know exactly what is going on with us, and
E) are racing against some kind of “normalcy clock” that says we “should” be done with things at a certain time, in a certain way, ’cause we’re so smart and what’s the problem anyway?
I am a firm believer that level of effort is a huge factor in the quality of our recovery. I have had to really focus on increasing my own levels of effort – everybody loves to tell me that things are much easier for me, than they actually are. Only I can actually know if they’re easy or not, and even that gets turned around in my head at times.
It’s constant work, pretty much. The main thing with me is to make sure I leave myself enough time to get my act together, as well as have enough good food and rest to keep myself going. And show myself compassion when things just aren’t working the way I expect.
So – finally – in answer to your question, what one thing would I change? I think that ongoing support in the form of feedback and coaching would be helpful. Having early intervention/education, as well — teaching people what they can reasonably expect after a concussion or TBI. I don’t care what the experts say — even though every brain injury is different, the experiences we share are the same: feeling like we’ve lost part of ourselves, confusion, dread, struggling to get back to normal, not knowing how long it will take to get there, and just not knowing so much…
I really think we need to do a better job of educating people about that. And your blog is a great help!
So thank you.
brain injury self rehabilitation (BISR)
November 28, 2012 at 8:32 am
You have made excellent points here. It does take a lot of effort to recover. Without support, survivors of brain dysfunction don’t have direction or guidance and might not have the ability to “know-how” to keep the process working for them. Rehabilitation isn’t innate in everyone…and I wish it were! Of course, if we could make ongoing rehabilitation mandatory our system wouldn’t be drained by those who are struggling.
The financial burden would be far less, the emotional struggles would be lessened and supported, and finally our society would be full of successful people regardless of their life’s journey. Acceptance of differences is key to our successful society!
brokenbrilliant
November 29, 2012 at 7:43 am
So true. I wish there were a way to educate everyone about this issue and everything that goes with it. Half the battle is dealing with people who just don’t get it — I often wonder what might have happened with me, had I been surrounded by people who understood just the basics of brain injury and didn’t judge me and rush me. I have to say, the support I’ve gotten is phenomenal. I sometimes complain about my neuropsych, but honestly their help has been a life-saver. Few people are so lucky.
brain injury self rehabilitation (BISR)
December 1, 2012 at 10:20 pm
It’s the lack-of-support that keep us advocating for those who will be traveling this unexpected journey! Even though the struggles are so deep and painful, some of us have been exposed to a few people that have helped … but understanding is the key to success in TBI.
Madelyn Griffith-Haynie, MCC, SCAC
November 25, 2012 at 10:20 pm
If you could change one thing about treatment, rehabilitation process and an injury what would that be? Why?
ONE thing? I guess I would have to say expertise.
I am frequently *appalled* to discover how poorly educated supposed professionals are about the conditions they claim to treat.
* Sometimes they didn’t get the entire picture in school (sometimes because it wasn’t taught and sometimes because they didn’t “grok” it well enough to integrate it — which is sometimes, but not ALWAYS, because of the teacher).
* Sometimes their information-base is obsolete. Bad enough when they don’t keep up with the latest, so they end up doing things the “hard” way (or the slow way, etc). HOWEVER, particularly with cognitive disabilities, new info sometimes proves the old info is wrong or misleading, so failure to keep up on the practitioners part can add YEARS to the struggle for the patient (if the patient is fortunate enough to survive their ignorance – which, let’s face it – IS the right word for it — unless you want to go straight to malpractice).
Noted ADD advocate, author & therapist Kathleen Nadeau, Ph.D. (who specializes in women and girls, btw), has said that ADD is the only field where the patients are tasked with educating their professional caretakers – almost across the board. (I’d insert “supposedly professional” here)
I’m not sure if “only” applies, but it certainly points out the pervasiveness of the lack of expertise I’d like to see changed. ON A DIME!
——-
My suggestion for improving the quality of care would be to add another piece to the re-certification process (meaning, whatever you have to do to keep your license):
in ADDITION to whatever number of recert hours of training required, a yearly online “basic and latest info” muliple choice quiz that makes SURE they track the new stuff and don’t drop out any of the basics.
I’d add an education portion to each question, explaining what’s right or wrong with each of the choices – which comes up as a summary when you’re done – along with your score. Then you start over and do it *all* AGAIN. You can’t pass the quiz until you answer every single question correctly, and you can’t keep your license unless you pass the quiz.
Pain in the butt? You betcha’ – but at least its the butt of the person who is getting PAID for the service they say they provide vs the lives of those they treat!!!
THEN I’d add a “review the test” panel of experts that sign off on the test to KEEP it current every year, and mitigate the many potential problems with deciding what to test.
Madelyn Griffith-Haynie, CMC, SCAC, MCC
– ADD Coaching Field co-founder –
(blogs: ADDandSoMuchMore and ADDerWorld – dot com!)
“It takes a village to educate a world!”
brain injury self rehabilitation (BISR)
November 28, 2012 at 8:19 am
I agree with you totally! This is the best detailed plan I hope is implemented in the future. This would be a start, and we’ll figure out how we can do this! Change will happen, and we will help make it happen!
Madelyn Griffith-Haynie, MCC, SCAC
November 28, 2012 at 11:12 am
From your lips to God’s ears – but FIRST we need to jump down the throats of those who oppose change.
Are you aware of what Santorum is up to lately re: *opposing* UN initiatives on Disabilities treaty ratification? (focused on physical disabilities, primarily, but if the overt is not even “legitimized” in the eyes of this Ken doll of a man who CLEARLY has a missing empathy gene, it will be a cold day in you know where before we see change for those with “invisible” disabilities.)
OMG – the man’s a hot mess and , unfortunately, he is NOT alone there. Our supposed “leadership” seems to be sorely lacking in empathy, kindness and vision — ‘sup with that?
More to the point – are WE going to stand silently by or slap them back?
ANYWAY, he is ralleying the Senate, and already has something like 37 (? – dyscalulate here so numbers don’t stick) signatures of those who promise to oppose.
NOT to start a red/blue war, but these are Rupublican signatures, so anyone in the TBI/disabilities community in those senator’s states or affiliated with that party – get thee to your telephone and RING IN LOUDLY that this action is unacceptable. (It “counts” more in their myopic political brains if you have power at the polls in THEIR state/party, btw – so don’t drop this out, anyone reading!)
xx,
mgh