This is more about my experience and why the BIC was incorporated? If you haven't already, please take some time to read about my experience after a traumatic brain injury (TBI).
My experience with a neurologist, two mental health doctors (outpatient psychologist and psychiatrist) and a lawyer after a traumatic brain injury (TBI) was horrible. It has affected my ability to trust the medical community.
Several years ago, I stalled knee surgury on a torn meniscus because of my dog, but the fact is I was very nervous about going under anesthesia with my medical provider.
Why was dealing with my doctors and a lawyer such a terrible experience after my brain injury?
I’ll start with my doctors. Shortly before I hit my head, I had decided to talk with a psychologist to help me deal with a very stressful situation at work.
Within a few hours after the second visit, I had a loss of consciousness over asphalt. I believe because I had two visits with a psychologist prior to my injury, the TBI I sustained when my head hit the asphalt was totally ignored. Not one of my outpatient doctors took in to consideration how an injury to the brain could affect my ability to cope with a pre-injury matter.
I would consider going to see a psychologist to get help to deal with an issue as healthy and intelligent. Unfortunately, in my case, I was dealing with doctors oblivious to brain injury and going to the doctors I saw was the biggest mistake of my life.
Drug companies have way too much influence on the medical community and the general public. Doctors seem to believe medication will “cure” many medical problems and there is no cure for brain injury.
After having been diagnosed with a possible seizure disorder, I learned about the Epilepsy Foundation while I was at a hair salon. To this day, I can’t believe I didn’t learn about that organization from my neurologist or a social worker.
I was never informed of any head/brain injury support groups until AFTER I lost my job. I didn’t learn about the Brain Injury Association of America (BIAA) until I attended my first brain injury support group after losing my job and over one year post-injury.
The only doctor I met through my medical provider who had some understanding of traumatic brain injury was an inpatient psychiatrist; he was the first doctor who told me I had two bleeds after hitting my head. Or, maybe he was the first doctor I recall telling me that. I have very few memories of the first two weeks after my TBI.
My inpatient psychiatrist was a kind, personable doctor with great people skills. I am forever grateful he recommended I get on the Internet. I strongly believe he was the only doctor who cared. The only mistake he made was to trust the judgment of someone who had a brain injury and thought that her problems would go away in time. Later he told me he learned a lot from my case.
The tragedy was I had to admit myself to inpatient psychiatry to get a competent doctor to order neuropsychological testing. Considering I had two brain bleeds, my employer told a doctor I hadn’t been the same since I hit my head and all of my outpatient doctors knew that, it’s totally unforgivable.
At some point, the inpatient psychiatrist thought I was leaning on him too much and it took me 14 years to meet another doctor within my medical provider who understands the long-term sequelae of brain injury.
I needed an attorney because I was trying not to lose my career. It was evident that I was having cognitive and anger issues after I hit my head. I was very irritable and impulsive. My brain injury was totally ignored and I was diagnosed with “major depression.”
My lawyer was worthless especially when I provided him with a copy of a chapter of a book titled something similar to “How to Win a Brain Injury Case” from a book about brain injury litigation titled, “Analysis, Understanding and Presentation” edited by Charles N. Simkins, Esquire. That book was sold through the Brain Injury Association of America at that time. It doesn't look like it's still in print.
According to the neuropsychologist who tested me the second time through my provider, I never should have been sent back to work. My lawyer didn’t subpoena that neuropsychologist, my inpatient psychiatrist, or the neuropsychologist who tested me initially. I believe their testimony would have made a difference in the outcome of my appeal through the Office of Personnel Management.
At the hearing, my attorney allowed someone at the agency I worked with to say something that wasn’t true without giving me an opportunity to explain why it wasn’t true. Need I say more about my attorney? He was lazy and cheap.
Every conversation I had with lawyers to appeal it further said that “there wasn’t enough money in it for them” or "it wasn’t worth going up against the federal government." Wouldn’t it have been nice if I were aware of Disability Rights Education and Defense Fund (DREDF) and Disability Rights Advocates (DRA)? Both are listed in the BIC Blue Book.
I wish I would known about the Veterans Administration (VA) Hospital in Palo Alto where they had a brain injury rehabilitation unit (BIRU). I am a non-combat veteran (1975 -1978, US Army). That BIRU is now one of four Polytrauma Units and now deals with veterans who have more than one physical injury or organ injured, including traumatic brain injury.
The US has thousands of troops coming home with traumatic brain injuries that are not being recognized. I am concerned about veterans coming home and going to doctors who don’t understand the cognitive or behavioral aspects of brain injury and then ending up being medically neglected like I was, and especially reserve and National Guard personnel.
It’s important to get anyone who has had an acquired brain injury (ABI) connected to specialists proficient in brain injury as soon as possible. After a traumatic brain injury (TBI) of any severity, it is imperative to receive neuropsychological testing and a proper and timely diagnosis; receive appropriate rehabilitation and be connected to appropriate specialists and resources like your national or international brain injury organization; the Job Accommodations Network (JAN), if you’re trying to go back to work; Epilepsy Foundation, if you’ve been diagnosed with a seizure disorder or are prescribed anticonvulsant medications; brain injury and/or epilepsy support groups, both online and offline, as soon as possible; and, if needed, referral to a lawyer proficient in brain injury or disability matters.
I strongly believe if I would have really understood I had sustained a traumatic brain injury in the beginning and I was connected to the applicable resources and specialists it would have made a difference in my recovery.
I want to add my neuropsychologists outside my medical provider were most helpful in my recovery but unfortunately, I wasn’t connected to them until AFTER I lost my job.
I still harbor anger towards the three doctors within my medical provider and the lawyer who totally ignored my brain injury. I've wanted to contact Dr. Fred Luskin of Stanford’s Forgiveness Project, if he's still at Stanford because that anger has the potential to affect my physical health.
Step 1 of 9 steps of learning to forgive identified in the Forgiveness Project is to know exactly how you feel about what happened and be able to articulate what about the situation is not OK. Then, tell a trusted couple of people about your experience.
I wrote a letter about my experience to the head of my medical provider and presented it to an attorney friend. He was concerned about the length and whether anyone would read it and he wasn't sure that I could be sued based on the fact I mentioned all of the doctors in the document and I was infocopying all of them. He also wanted me to forgive my doctors and I can't. I need the advice of someone who isn't my friend, but I haven't been able to get organized to follow through on that.
I feel betrayed by the medical and legal community. I was neglected medically. I’ve surpassed the suggested quota of "a couple people" by sharing my horrible experience on the Internet.
I like to think the BIC web site is one more way to reach out to those affected by an ABI so they can find resources so that what happened to me doesn’t happen to them.
NOTE: I do not mention my medical provider by name because a doctor I met 14 years after my TBI is doing everything he can to make a difference for those living with an ABI and their caregivers within my medical provider. I don’t want to jeopardize that relationship. I really feel blessed to have met him. He attended the BIC’s first brainstorming meeting and he personally heard the needs of the brain injury community. He listened and he has acted on what he heard. I'm still waiting for my provider to provide support groups to TBIers. They have support groups for multiple sclerosis and stroke patients, but NOTHING for people who've had a traumatic brain injury and experience similar symptoms.