Surviving Traumatic Brain Injury

Your comment of “I wish I knew I had a TBI when I was growing up. It could’ve saved me a lot of difficulties with school, work, life, etc.,” seems hopeful, but I’d like to let you know that it wouldn’t have made much of a difference. The world was so far behind on TBI knowledge back then and little to no accommodations were provided unless there was someone in the faculty who had personal brain injury experience.

I am only 37, and had 2 TBI’s at age 17 and the third TBI at age 35. Back in 1994 when I had the first two TBI’s, my public high school in Fond du Lac, WI was made aware of my condition, yet they miserably FAILED at providing me with any adequate provisions. They told my parents, “We’ve never had a student with Traumatic Brain Injuries before.” They failed to offer me an Individualized Education Plan or anything to help me finish the 2 elective courses I needed to graduate. (I was a genius and graduating early from high school when I had my first TBI in a car accident and 2nd TBI falling out of bed in the hospital when I came out of the coma from the car accident).

Today, neurologists know that the brain needs sleep and time to heal. The brain requires a calm, peaceful and nurturing environment to neuroplasticity to occur. Without a proper environment, a survivor will be stuck in the constant fight or flight response and not recover. The neurologist I had in Fond du Lac, WI had recommended I go directly back into high school from the hospital with no rehabilitation programs or anything. This landed me in a constant state of anxiety for the next decade of my life.

In that high school, I was on crutches and didn’t even receive an elevator key to access my locker. To this day I have a repetitive nightmare that I am in a high school situation and cannot remember where my locker is or what the combination is. As a senior who spent the first half of the school year in the hospital, I never had the option of purchasing a year book. For some strange reason, I became sentimental and wanted a year book to remember my “friends” from school. I asked at the office if one of the teachers would spare their own personal yearbook so I could purchase it from then, and was shot down. I was so overwhelmed with dismay at the attitudes and lack of love displayed by the public school teachers that I left the school for good. This is about the same time that all my former friends did nothing to maintain their relationship with me. My best girlfriends went on a planned trip to Colorado and didn’t include me. They never called anymore and acted very distant since I couldn’t jump in my car and drive their hippy dippy butts all over the state looking for parties.

Thankfully I had near perfect ACT scores the year before my car accident, so I was accepted into the Catholic college in my town without a high school degree. The school knew that I had 2 TBI’s, and had it’s own special learning department. Yet they didn’t quite understand what it’s like for a newly brain-injured student to try to wake up early in Winter and get her butt to a world religions class taught from a Catholic perspective. Not a piece of cake! I ended up dropping out of college when I figured how much more money it costed than a state university that offered an even better education. It just wasn’t worth eating Ramen Noodles for years- in other words, I couldn’t afford college at the slow pace I was working at while trying to hold a job and finish high school in a book form for the couple credits. I had no vehicle either, so I was stuck on campus and that was not fun at the small school with nothing nearby.

In the meantime, my friend figured out a way for me to receive free Hyperbaric Oxygenation Therapy while being a nanny for her daughter in Pompano, FL. The better weather of FL in the Winter combined with the HBOT did wonders for my brain. My creativity and art skills returned and I started seeing a real future for myself in health care.

I got on the waiting list to attend technical college and be an Occupational Therapy Assistant, like the one I admired from volunteering at the health care center in my home town. At that point, my life started (again) and I met my (future) husband and we moved near my college. I was able to graduate from college on-time and ended up working LTE at the state mental institution. I got married and had 2 sons with whom I decided to stay home with after doing a clinical rotation at the local daycares.

Unfortunately, I will never get to work again due to the intense chronic pain I suffer from daily. It started after the birth of my second son, who was an improperly medicated emergency C-section. My baby boy turned breach the day before my induction and the doctor never bothered to put his hands on my belly. (I am very pleased that insurances now cover midwives to assist women with their birth experience, unlike just a decade ago. Almost makes me want to have another one- lol).

My point is that I’ve been around the block as both a patient and a medical provider and have the inside track of knowledge of health care. I know that it is driven by pharmaceuticals and it’s a rare occasions to find a provider who really has in mind your best interests and not ultimately their own financial interests.

I really thing that TBI is not a big money earner for the medical field, like cancer, and will never get the attention that it deserves. Therefore the general population does not accommodate or know how to accommodate survivors. So knowing years ago what you were struggling with would have helped you personally deal with your life, but it would’ve probably made little difference in how you were treated by the majority of people.

I would like to add, however, that with more of us survivors advocating for ourselves as a whole, we are drawing more attention to the need for education of the general public about brain injury. I wish that football would adopt TBI, instead of breast cancer, but that would obviously cause them negative publicity. In the meantime of finding someone huge to support traumatic brain injury, us survivors can wave our flags and use medical journal citings and laws that prove our point.

There are quite a few books and books into movies out there which somewhat provide a slightly skewed view of brain injury, but point to the severity of the injuries. I love the movie 50 First Dates, though it could’ve used a real survivor writing the details of the brain injury that comedy revolves. And the book, The Vow, which was beautifully and poignantly written by the Christian lady who suffered a TBI shortly after marriage, was made into the worldly movie that forgot the point of the book. Her faith and love for God with priorities as a Christian wife are a good part of what helped Krickett Carpenter succeed (not the steamy sex scenes or skewed plot, which resonated more with viewers than the actual truth of living as a Christian with TBI). I just highly recommend that a person reads Krickett’s book before they see the movie, if they even bother to see it. The book is great and the movie was a poor Hollywood equivalent at best.

I know most major cities have brain injury support groups and more of us are reaching out to other survivors in friendship groups. I was a part of Mayo Clinic’s Advocacy Program which opened my eyes to advocacy beyond the medical perspective. I reach out to fellow survivors on a daily basis on Facebook and choose to maintain friendships with other survivors- though it may be difficult with limited mobility and funds. I someday hope to facilitate a local, non-medical support group. Right now I am in the early planning stages of figuring out how to avoid paying the government fees to run a group and collect donations from friends and local businesses to keep the group afloat financially and not go broke making copies and providing refreshments and speakers.

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