DJ Post Script Part One – Direct Contribution from Severe TBI Survivor

Editor’s Note:

TBI Voices is a undertaking to listen to the voice of the brain injury survivor.  This project has almost entirely consisted of stories written from the interviews I have conducted.  I have just finished the DJ story, in 20 parts. After 20 parts, one would think that we would have pretty thoroughly covered the subject, but DJ has been very interactive throughout this process, commenting nearly every day on the portions of his story as they went up. Thus, I thought it might be appropriate to ask DJ if he wanted to write a post script to his story, to fill in the aspects of his story that our interview had not covered.  DJ has always felt some bitterness about the treatment he got and has strong feelings about what could or should have been done better to improve his outcome.  Those kind of issues don’t fit well within my story format and we simply didn’t have time to discuss them when I did his interview. But because of all the effort that he has put into this project, I wanted to give him this chance to to heard on those issues.

Thus the next two blogs will be DJ’s chance to tell the “rest of his story.”

Gordon Johnson

My Appreciation and Thoughts about the TBI Voices Interview and How I Could Have Had a Better Recovery

By DJ. Aselin

Thank you for creating waiting.com.  Thank you for all that you do for “us”.  For me, this was a great experience for many reasons.  I have had these thoughts in my mind for almost six years.  Old high school mates really do not see anything wrong in pictures; Mr. Johnson really knows how to bring out the pain and suffering, cognition issues and what it’s like to just make a successful day happen.   He seems to feel the pain of the family in the hospital sitting in the waiting room not knowing if the last words they had before this coma, were the last ever to be spoken with each other.

I entered Cape Canaveral Hospital with the potential that I had a minor brain hemorrhage.  Cape Canaveral Hospital is near the second largest port in Florida, but does not have a neurosurgeon.   I have, as many know by now, done extensive research about why this might have happened.   Hospitals do not like brain bleeds to be transferred.  I cannot speak for the ambulance crew, can only wonder what happened on making the decision to abort driving straight up to Daytona, or Orlando to a trauma I center.

I cannot believe I was taken to a hospital that once a brain hemorrhage was found, could not even do anything about it in the first place.  Next, it was a bit baffling as to why near the second largest cruise ship and port in the Eastern Central part of Florida, no neurosurgeon was available.  I spent six hours getting Lortab, asked questions about how this happened,  even vomited in the CT scan at two am.  I had a physiatrist even ask me if I did vomit at anytime in the first few hours, Dr. Batas said “that’s good that it happened”.   I guess vomiting in the CT relieved pressure that could have paralyzed part of my brain, body.

Finally it was decided that without some sort of an attempt to transfer me, it was going to be a fatal night for me.   Thank goodness Daytona’s Halifax Hospital agreed to take me.  I could not be flown as I said earlier because there was bad weather in the area.  I have talked to mom and dad and it’s been relayed that I was only given a 40% chance to even make it up to Daytona.   The same hospital that pronounced Dale Earnhardt DOA, was now going to get a chance to save me.   Immediately upon arrival a burr hole was drilled, immediate draining if subdural blood started.  The pressure on my brain must have been like Brad Smith squeezing down on a tennis ball.

I spent sixteen days in a Glasgow five coma. I was diagnosed with subdural hematoma at Cape Canaveral Hospital.  This had become massive subarachnoid hemorrhage, severe hydrocephalus, effacement of the basilar cisterns, I fell into pneumonia and throw in pulmonary lung infiltrates.  A temporary shunt was put in, a permanent one about ten days later.   I woke up, unplugged everything and was found on the floor.   My mom said I wanted to talk to her, she said I told the nurses that I was “going for a run”.  It was  not unusual to do that before the injury, has not happened in six years since though.  Next, was HealthSouth, which gets about a C- for care.  This is where things already started to get goofy.  Just days after arriving at this place is where the nurse case manager shows up and creates what I call the biggest excuse for fraud I’ve ever seen in my life.  I could have gone home to my family and walked, slept, ate, used a gym, bike and tried to go back to running without all the dram I faced in the four years after I met this lady.

For ten months, six of them spent wasted sitting in front  of people that had no relationship to traumatic brain injury, mostly full blown alcoholics.  Paradigm rehab advisors came along, a nurse diagnosed me as a “dual diagnosis” condition, next thing I know I go from coma to a drug and alcohol program because this lady’s company needed the contract is all I can figure.   The very first meeting at CCS I told them not to fret, the use of alcohol would not be a problem –  I wanted my endurance, muscle tone and life back.  Forget that idea, it’s not possible to recover from TBI and sit somewhere else three days a week.   For three months I was stuck in assisted living getting all night occasional door openings and checks.  How would you like it if housekeeping showed up several times a night to see if your pillow is “comfy”?  The front desk called you eight times a day to see how you room is?  Coming from working for Marriott, I can guess it’s not a successful idea for a hotel to bother the customer that much.   The first night at CCS was a nightmare, the next ten months not much different.  A nice looking lady decided I needed to be watched, pulled a chair out of the room while I was sleeping and decided to sit outside of my room and literally stare at me while talking on the phone.

Seizures are not unusual with folks that have a fresh traumatic brain injury; I had ZERO seizures to that point.  The first morning I woke up at CCS Tampa was something to not forget either.  A Caribbean caregiver came in the room several times; to this point I doubt I had slept four hours.  He was cordial, a nice guy.  I told him of the staring person, the overall nervousness of being in this place and it had only been about 20 hours to that point.  He, of course apologized as many did over the years, went to hand me my morning group of meds, then pulled them back.  “oops, these are the wrong ones”…..oh boy!!  He said that “Bryan” my occupational therapist was “stuck in traffic”.  I met Bryan a short time later, it did not take more than a few more days to realize there really were not too many people very serious about doing things correctly at this place.

A few days later Bryan brought me to an alcohol program, why I still to this day I have no clue.  There was no alcohol involved in my injury and although some find it hard to believe there are laws pertaining to workers compensation, the Long shore Harbor Workers Compensation Act is pretty darned clear.  If alcohol would have been involved, contributory negligence would have been assumed, things would have been different.  That was not the case though, nobody ever said it was involved; this lady just needed a contract to self serve her personal interest.  So, we started this journey with a very sobering head injury and ended up around a bunch of people that had their own interest’s not mine.  Six weeks went by, not much in the way of using a gym, getting PT, OT, and Speech therapy happened.

Next disturbing thing I noticed was that Bryan the OT that can’t show up for work on any sort of schedule was seen to be at the bus stop when I was transferring busses were seen actually following the bus.   One of the funniest stories you are ever going to hear from me happened next.  This lead to me actually losing my bus pass for one month.   I saw one day that he was following me in his black Volkswagen.   He got stuck a bit behind the bus, was down below us on a hill.  I was a mile from the alcohol rehab, jumped off the bus and ran across the street and into the Burger King.  I turned around and looked for Bryan.  He went zooming by the Burger King; the meeting facility was a mile more down the road.  I bought three croissanwiches, one for him…ha-ha.

Bryan made a quick recovery, even before Burger King produced breakfast.  I grabbed the bag, ran out of the side door and went into blending into the scant strip mall crowd.   I walked quite a ways to the end of the mall, turned right, walked across the street and saw that Bryan had returned to park across the street.  He did not see me, thank you U.S. Army for showing me how to move and cover! Ha-ha.  I knocked on his window, he snapped around with utter surprise, I handed him a croissanwich as he opened his window.  He took me to the this alcohol program, then I was picked up after wards and brought back to CCS where I got the most incredible speech from my case manager and of course, Bryan.  My bus pass was taken away for an entire month.  That’s fine I thought.  I went and started researching bicycles.  For the next three months I finished up this stupid, worthless, waste of time alcohol education program.  My doctor remained the Healthsouth medical director, for that I can’t really explain, the reasoning behind that is unexplainable.

I learned exactly NOTHING, was followed all over the place and after a while the physicians assistant PA Cole took over seeing me.   My codman programmable shunt was MRI’d several times without the proper follow up, neck and spine shot up like a Libyan protest, but no real education as to what was causing all these issues was taught to me or family.  Treatment team meetings were a disgusting waste of time and money.  I did collect $746.66 every two weeks though and bought a nice bike in August of 06.  My case manager Dorothee had been wondering around this time why I had only been going to therapies on campus for “one hour” a week?   You know the answer to that question; they were on a wild goose chase.

Coming Tomorrow in Postscript Part Two – Rehab at Communicare