My life changed in a split second-

On February 13, 1982, I was a nineteen-year-old college student until my life changed in a split second.  I fell off my ten-speed bike, hit the right side of my head, and was not wearing a bicycle helmet at the time. I blacked out for a few seconds but a few students had seen me fall and helped me get to the college’s nursing office.   My father was called from the nurse’s office at the college and took me to the emergency room at the local hospital.  The ER doctor determined that I had suffered a concussion from the X-rays they did of my skull that day.

While I was at the emergency room, I kept complaining about not being able to hear out of my right ear.  I already wore a small hearing aid in my left ear so I was very concerned.  The doctor did not seem to be concerned about this, and he discharged me to go home with my Dad.  I was sent home with instructions to take it easy for a day or two.  Once I got home I went straight to bed.

The Hospital – Shouting Into Silence-

That night I began to vomit, had vertigo and fell a number of times. My Dad rushed me back to the hospital and from the ER department I was admitted for observation.  We left so quickly that my hearing aid was left behind.  Without my small hearing aid, I could not hear at all.  No one listened to what I had to say about the fact I could not hear them.  I felt like I was shouting in silence.

Scrambled Brain – Unsuccessful Breakout-

After the nurse settled me in my room and my parents left promising to come back the next morning, I tried to sleep, but I was still very dizzy and disoriented.  I then made up my mind that I would go home because no one was listening to me.  I left my bed and managed to get down to the fifth-floor main area of the hospital.  In my convoluted thinking, I felt if I could make it to the first floor of the hospital near the morgue I would be able to leave and go home to my bed.

A hospital security guard saw me and he stopped me in the lobby.  Of course with a hospital id band, pajamas, robe and slippers I was very conspicuous and when he asked me what I was doing I said, “I am heading home, NOW! Don’t try and stop me!”  I was extremely confused and began to cry because I was angry.  Somehow the guard managed to notify the charge nurse of the floor that I had “escaped from” and she came down to the lobby to escort me back to my room.  When I refused, the nurse called my parents at 2 a.m. and they returned to the hospital.  They convinced me to stay until morning. I finally gave in and went back to my room and I was given a sleeping pill.

I woke up the next day at around 8 a.m. and was examined by a neurologist, given a series of tests and then released to go home.  My parents were told to make a follow-up appointment with my ear, nose and throat doctor to address the hearing loss and the loud ringing I heard in my right ear.

Hellish Months – Post-Traumatic Concussion Syndrome

The months following my bicycle accident were hellish.  I had to learn to live with tinnitus in my right ear, get fitted with a special type of hearing aid called a CROSS hearing aid.  I wore a receiver in my left ear, and a wire attached to a microphone transferred all the sound from the right ear to my good left ear.  I was told as soon as my hearing stabilized I would be fit for something different. One year after the accident I was fitted with two hearing aids and have worn them ever since.

In addition to the hearing loss after the accident, I was still suffering from vertigo and had difficulty keeping my balance.   These symptoms went on for months.  I also had mood swings from extreme elation to depression, developed strange obsessions, and had dark, nasty, angry rages that no one including my boyfriend, parents, sister, and friends could cope with at the time.  In hindsight now I realize I was suffering from post-concussion syndrome.

Search for a diagnosis – Yale New Haven Hospital-

During these first few months I felt something was very, very wrong with me.  I saw many ear, nose and throat doctors and received the same diagnosis of sensory-neural hearing loss as the result of the concussion. I was frustrated and upset about it and at one point I had even gone to the health services library at the hospital, thumbed through some medical books on the topic of neurology and found something that correlated with all of the symptoms I had been dealing with since February.

I convinced my parents that I needed to go to a teaching hospital to try and confirm what I had found in the medical book.  My mother arranged for me to be seen at Yale-New Haven Hospital in the ear, nose and throat clinic.  At the appointment, I told the specialist my symptoms and what I had found might be wrong with me based on what I had read.  Dr. Yanikowsa ordered some special tests including a PET scan and when the results were compiled my parents, and I went back for a follow-up appointment.  The diagnosis I had made for myself from reading the medical textbook proved to be accurate.

I had experienced a fracture of my right temporal lobe’s petrous bone that was otic capsule disrupting (OCD) and as a result damaged my cochlea and I was left with sensory neural hearing loss in my right ear and due to the fracture my left temporal lobe was damaged.   Dr. Yanikowsa said I was lucky because not only did this type of head fracture frequently cause permanent hearing loss but I could have had facial paralysis that may or may not have resolved itself over time . 

Dropping Out of College-

I made the difficult decision to leave college two semesters after my accident.  I found I could not keep up with the school work, and I was so scattered it made sense just to move forward with my life.  I got married, attended secretarial school with an emphasis on data entry and after two years I found employment at the Department of Transportation State of Connecticut District 4 Office as a data entry operator.  What started as a simple data entry position grew into a job where I became a trainer for construction inspectors on a mainframe on-line computer system.

I processed payment estimates each month for the contractors and kept track of them.  I even became a liaison between the data center and the main office of the DOT.  Being a liaison required me to learn many of the nuts and bolts of highway construction projects terminology and basic data processing to interface between the data center’s programs and the engineers that I worked with on a daily basis.

Adjustment and Acceptance

Learning to adjust to my new “normal” took many years and during that time I began to accept the person I had now become; warts and all.   I never viewed myself as having had a traumatic brain injury, I always identified with being a hearing person with a sensory neural hearing loss in both ears in the moderate-severe range which was correctable with hearing aids.   I never thought twice about a head injury at all because no one else did.  I always attributed my lack of impulse control, faulty memory, inability to concentrate, poor organizational skills and mood swings to normal female problems (PMS) and stress.  All of my co-workers dealt well with my quirky personality and were patient with me when I had my periodic meltdowns. In spite of my deficits, I was able to do my job and do it well.

Adaptations-

I adapted to situations where my memory seemed to fluctuate by making sure I was always ahead of the game in regards to keeping myself educated and up to date on whatever was necessary to perform a job.  An example of this was when I worked for the Department of Transportation State of Connecticut for nineteen years as a computer trainer.  I always made sure that if computer upgrades were coming up in the next year or new software was to be purchased that I equipped and educated myself well before the technology appeared in the district office.

I would purchase comparable computer equipment/software to use at home and take the time to train myself, which typically took months.  However, by the time the new office systems were in place, I had brought myself up to speed and was able to do my job.  I realize now that this was very much me unconsciously knowing there was a problem, but I found a way to work around it, which served me well for many years.  There was one area that I could not find a workaround for, however.

Major Life Impact-

For me to advance my career with the DOT, I needed to be able to pass engineering math tests, and I never seemed to be able to do it.  The linear thinking required for mathematics was something that was beyond me.  Now, in hindsight, it was the result of my traumatic brain injury.  My gut told me I could eventually do it, but it would take a lot of extra time, tutoring and patience to accomplish this goal.  Due to time constraints I was unable to apply myself.

My father passed away in April of 2000, and his loss was devastating, and the start of my unraveling on all levels in my life.  It is in these moments of unbelievable stress that my TBI and my deficits in cognition began to impact me and cause me to make impulsive decisions that I would not normally have made. I divorced my first husband and jumped into a second marriage with someone that I normally would not have even been interested in.

Moving to Massachusetts –

I moved to Massachusetts in 2004 with my second husband.  I had already left state service because I knew my time there was done.  Due to my inability to pass the engineering math tests, I lost my position as a computer trainer because my job title as Engineer in Training III was not sufficient for me to keep my job.  Management felt the duties should be performed by someone with a higher job classification.  I found myself floundering at the DOT and made the decision to make a new start for myself somewhere else.

Massachusetts Rehabilitation Commission –

I sought the help of the Massachusetts Vocational Rehabilitation Commission to try and reinvent myself in some capacity and start a new career after my move to Massachusetts.  Because my second husband made too much money, I did not qualify for services through Mass Rehab.  To be considered eligible for services they did pay for testing to be done and this is where a major epiphany occurred. John Keegan, my MRC counselor at the time, strongly suggested that I undergo neuropsychological testing with a neuropsychologist to see if the concussion caused more than just the hearing loss 35 years ago.

Neuropsychological Report –

Surprisingly the findings of the test showed deficits in some areas for someone of my age and life experience.   The test results also noted that because of the TBI what I had thought was simple female PMS was not that at all.  It was the result of the type of brain injury I received in the bike crash.  My thinking about what happened to me 35 years ago changed because of these findings.  I realized that my cognitive and behavioral problems existed side by side with my hearing impairment. My hearing impairment had always been the most obvious result of the injury, and it was the only one that was addressed by the medical community 35 years previously.

A Picture Put Together-

It was because my vocational rehabilitation counselor was familiar with brain injury that the complete picture was finally put together.  After the neuro-psych testing, I went to see a neurologist who was a specialist in TBI, and she referred me to cognitive rehabilitation that I attended for eight weeks as an outpatient in 2010 (Deibert. 2010. P 7).  Being in rehab even 35 years after the fact helped me a great deal.  It was in rehab that I first heard the term “neuroplasticity”, and that was an eye-opener for me as I began to research and learn more about it and have come to appreciate my own brain’s ability to heal.

 

My Own Journey with TBI –

The traumatic brain injury I had experienced caused damage to my left temporal lobe in addition to the hearing loss. These problems present themselves in the difficult time I have when I try to think logically and solve problems independently of any knowledge I may have acquired previously this is a type of reasoning is known as fluid reasoning. When I am presented with too much information or stimuli, I tend to shut down and become overwhelmed.

Focus Focus Focus-

I also have trouble focusing (similar to someone with ADHD), problems with my working memory, and behavioral issues related to my impulsivity/disinhibition (I don’t stay on task).  I am capable of learning complex subjects including mathematics, but I have to slow down and be methodical this can increase my brain fatigue that is already challenged due to the amount of attention I have put out to understand people around me because of the hearing loss.

Setting Up Myself for Success-

To set myself up for success and reaching my goal of obtaining my degree I have had to work with my strengths that are verbal comprehension and my processing of visual material quickly which aid me in understanding the subject material more quickly and give me time to think things critically through which essential for higher learning.  My work with the Learning Disability office at UMASS helps me make my professors aware of my ADA accommodations that call for additional time to complete assignments, closed captioning for video lectures, note takers, one-on-one tutoring and extra time to complete tests.

I carry a light academic load of two courses per semester to prevent fatigue and husband my resources and perform at my best.  Finally to improve my ability to focus and stay on task I take a medication called Adderall (which is typically used for ADHD) but can also be used for the same type of problem in brain injury survivors.

Workarounds for Brain Injury Deficits-

I have come up with workarounds for my short-term memory problem(s) which include the use of flash cards and cue cards for math and linguistics, and I have a variety of on-line tools, dry erase boards and IPad applications to assist me with general organization, daily living schedules, and school subject matter. Daily I do a brain workout with the on-line Lumosity program that has specific on-line games that address neuroplastic processes. I also use neuroplasticity processes during my learning process.

Building Math Skills-

Testing I had in 2013 indicated that I was at a fifth-grade math level.  To bring myself up to speed, I have enrolled in Berkshire Community College’s (Pittsfield, MA) self-paced math modules.  With the assistance of my professor and tutoring per week over the last year, I have started the beginning elementary algebra modules this semester.  I needed to do this to take and pass UMass’s Elementary Algebra course that I need to graduate and is still very much a work in progress.

To retain what I am learning in math, I spend a lot of time going over the homework problems, working with my flashcards, Khan Academy and with my tutor two times per week.  These strategies are examples of the use it or lose it and the repetition/intensity neuroplastic principles being applied to my learning.

Specificity Applied –

I use specificity frequently while I am learning by taking math out of the classroom and applying it to situations in my daily life.  Being able to figure out if a food item is a buy or hype at the supermarket tickles me.  Telling someone how much paint they would need to paint the interior of their home based on the room’s square footage helped me help someone else.  In my crafting I find I am using simple geometry and formulas to save money on craft supplies because I am using exact amounts and nothing is wasted.   This list goes on and on.

Salience Applied –

Salience is the neuroplastic principle that keeps me motivated as I continue learning and building my math skills.   I need to pass the elementary algebra at UMass to obtain my degree, but I also want to prove to myself that I could have eventually passed an engineering math test and moved up through the ranks in the engineering career path if I had stayed at DOT. It didn’t happen and maybe it wasn’t supposed too at that time.  I hope and pray that the time is now and after passing elementary algebra and graduating from UMASS I can begin a career where I can help other brain injury survivors.