Category: TBI Survivor's Stories Written by Survivor
Summary - the cause - the injury - today's quality of life?
4/18/73: I was 21 years old, working my way through college rebuilding a warehouse shell (from a fire). It was 2 stories plus a basement: 28 feet from the cement floor to the roof line. We had just finished lunch and I was told I picked up two 4'x8' sheets of plywood and carried them to the edge of the roof we were rebuilding.
I hear I took an extra step and went over the edge. I landed on my heels, breaking my hip and sustaining a compression fracture of 3 thoracic vertebrates. Then I fell back on my elbows (breaking 5 of the 6 bones) and then hit the back left of my head, resulting in a subdural hematoma, which was evacuated. I was in coma for 2 weeks and in the hospital for 2 months (6 weeks, including the two in coma, of which I don't remember). After 15 years, I felt that I finally was "back", cognitively. Since then I have improved considerably. Now I'm happily married, with a stepdaughter and 2 granddaughters. I'm now receiving SSDI and I consider myself somewhat of an expert on TBI. I'm now affiliated with "HOPE Beyond Trauma", a company starting to offer teleconferences and group counseling over the phone.
Please share your experience at the time you became aware of the injury?
It was about 10-12 years before I finally discovered that TBI was my problem: I thought it was repercussions of the pain from Range of Motion exercises that were administered by my nurse at home every waking hour. I don't really know exactly when I "discovered" TBI, but I started going to TBI support groups in the later 1980's. After that, I read everything I could about TBI, started attending and then leading TBI support groups. I've worked in a number of TBI agencies, including nearly 5 years as a TBI Case Manager and over 5 years with the Dept. of Rehabilitation with a substantial TBI caseload.
Tell about the experience immediately after the injury. Surgery? Coma?
This is all second-hand from my family and the medical reports (I have a rather thick file). I had the hematoma evacuated the day of the accident (as there were no CAT or PET scans, they had to wait until my eyes became 'fixed and dilated'. I was in coma for 2 weeks, as I said. They also set my hip and operated on my elbows while I was in post traumatic amnesia. I went back some weeks after my discharge for a "forced manipulation" of my elbows (leading to the exercises mentioned previously).
Tell us about the hospital stay after the survivor was no longer in a coma
One month of the six weeks you're asking about were in post traumatic amnesia, so I can't respond too well. I've heard that my FIRST WORDS were a joke: I called for my mom "Edith Bunker" and everyone laughed. I had several visitors: friends (who visited me before I pulled out of the amnesia, so I don't remember any of their visits) and one woman who said: "You don't know me, but I was in an accident similar to yours and I'm here to tell you it does get better." I keep those words with me still: they saved me from an even deeper depression than I experienced.
Tell us about the time in rehabilitation?
I had physical, speech and I believe some occupational therapy in the hospital, and I had a bit after I returned home, but very little.
Tell us about coming home!
My last meal at the hospital was a feast. They were so happy that I had survived (a similar patient had recently died) that they allowed me to mark off as much as I wanted: I checked some items 3 times! I returned to my parents' home, which was fine except for those aforementioned elbow exercises: a few times I felt myself starting to pass out from the pain (I was at my physical limit)
"Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma"
suicidal, depressed, labile, fragile, frustrated, angry, confused, self-absorbed, worried, slow, clumsy, unbalanced, weak, dysarthric.
Tell us about life today?
Life is good now. I'm making the best of my life by working with people with TBI so that they don't have to go through as much emotional pain. I finished college in 1975; studied Rehabilitation Counseling (Masters program) graduating in 1980; and earned a Masters in Counseling Psychology in 1989. The Counseling Psychology program was at USC and at that time they were focused on "Humanistic Existentialism": this turned out to be PERFECT for me to cope with my TBI. I've learned that we all have a 'calling' and the mark of our worth is how we work on our calling.
What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?
Work at it! Write things down! Organize your life! Make it simple: don't depend on your memory, at least not without a backup if the task is important. I use the Planning and Execution Assistant and Trainer (PEAT), which has allowed me to keep up with my very busy life. Check it out at www.brainaid.com: it's awesome! I found, by looking back over my Week-At-A-Glance books over the years, that when I was depressed (from not improving: plateauing), it was when I wasn't in school and had no job or a 'mindless' job; when I was working an stimulating job or studying, tmy improvement picked up considerably. I will never 'slack off': it's critical to keep our minds working. We also need lots of sleep. Just lately I heard how important this is for folks with TBI, and now I try to average 9 hours of sleep a night (I probably could use more). The reason for this is that our minds are running at nearly full speed all day long, just trying to keep up, and so we need more sleep than we did before our TBI. Most people run on, say, 50% of their "mental capacity": if they get sick, or lose sleep, or are distracted, this percentage will rise, but it hardly ever takes ALL one's mental energy. With a TBI, we're "running hotter": it's more like 80-90% all the time. If we lose sleep, our mental performance suffers. This is the reason that we need to organize ourselves so that we don't have to use our memories for everything. If I organize, which I'm always trying to do, I find I have more 'mental energy' to use on the things I need to, not 'spending' it all on the routine things of life.