My Experience After a Traumatic Brain Injury - My Experience with the Medical Community

 

MY EXPERIENCE WITH THE MEDICAL COMMUNITY

After losing my job, the psychologist who diagnosed me with major depression provided me with information from Family Caregiver Alliance (FCA) about brain injury support groups.  A little too late to save my careers or moreover my reputation -- I believe.  I contacted the person who founded the East Bay Brain Injury (EBBI) Support Group and my journey to recovery began. Learning that I wasn't alone and receiving some validation about the realities of having a brain injury was very helpful to me in coming to terms with my disability.

The neurologist I saw after my brain injury failed me in several areas.  When I complained of fatigue, he ordered a sleep apnea test, which was negative.  Although an EEG done at the time of my hospitalization revealed a possible seizure disorder, I was never referred to the Epilepsy Foundation or any other agency for assistance in understanding this disability.  The neurologist never asked me if I had ever hit my head before.  (I had been in an auto accident at the age of 21 and I hit my head on the windshield.)  The neurologist frequently compared his forgetfulness to my memory issues.  He waited until after my inpatient psychiatric admission to pursue neuropsychological testing.

When I asked him why he had waited, he told me "I just wanted to see how much you could take.”  To this day, I still can't believe a neurologist who specializes in the nervous system said that to me.  The brain is often referred to as the central processing unit of the nervous system and controls every function of the body.  I never went back to see that doctor again.  I immediately went off the seizure medications he had me on too.  I believe he had me on them for his protection only and not for my best interest.

A neuropsychologist that I started seeing later outside my medical provider told me after hearing my story:  “You were neglected medically.”

I realize now that there were many symptoms of brain injury that my doctors, especially my neurologist missed.  My employer and coworkers noted significant signs of difficulty with executive and cognitive functioning and a change in my personality, but I had to admit myself into an inpatient psychiatric unit to receive neuropsychological testing.

Manageable depression turned into major depression after the brain injury and my doctors’ lack of a proper diagnosis exacerbated the condition.

I lost both of my careers (civilian and military) but most of all I lost my self-respect.  My careers were my life; my losses were profound.  I graduated with a BS in Business Administration with emphasis in Transportation.  In September of 1989 my dream to become a transportation management specialist for the Department of Defense was realized.

I began an internship at Military Traffic Management Command at Oakland Army Base and graduated from the program two years later.  After graduation, I was hired as a permanent employee.  After the brain injury I lost my civilian job because my employer and I were never informed I had a TBI and there were changes in my personality and my cognitive function.  My inability to deal with a pre-injury issue due to the deficits of the TBI made me appear extremely angry and I was perceived by my employer to be dangerous.  To this day, I still don’t know what I said or did but I do know my lawyer nor my medical provider did anything to help me.

I was also a reservist in the 319th Transportation Brigade at Oakland Army Base.  I can't imagine the liability I would have been to this country had I been mobilized with a brain injury.   Shortly after losing my civilian job I put myself in the Individual Ready Reserve (IRR) hoping that things would get better but a few years later, I resigned my commission.  Resigning my commission was very painful, but the best thing I could do for my country.  If mobilized in the event of a war, I could not afford to forget to order food or bullets for the troops, get lost in a convoy or walk away from my weapon.   My memory is faultier than the average person and since the brain injury stress really exacerbates my cognitive deficits.

This experience has affected my ability to trust doctors.  Doctors need to recognize symptoms of brain injury and make appropriate referrals to specialists and agencies for continued support.  Doctors need to learn how a brain injury can affect a person's ability to cope with a preexisting condition.  Doctors also need to communicate with each other and their patients.