The story of my health journey is a long and frustrating one. Frustrating may be an understatement.
At the age of fiftysomething, while working for a large engineering firm as a Project Manager, I began having headaches. The headaches were so severe that one day I passed out during a meeting with HR. At the time, no one knew the cause of this syncope episode, but my supervisors assumed that I had been drinking and sent me home once I regained consciousness. They did not follow the proper company guidelines to involve our on-site medical personnel, which later had huge consequences for both them and me.
Thus began my health issues and my search for answers. My primary care physician referred me to a neurologist, who thought I was having transient ischemic attacks. Due to my low blood pressure, the neurologist prescribed a medication to increase it, assuming this was the cause. This was not the right approach. Within two weeks the optic nerve in my right eye popped, causing some vision loss and a severe sensitivity to light, particularly white light. Something as simple as going outside required a hat and two pairs of dark sunglasses. I was referred to another specialist.
This specialist recommended blue tinted glasses to help calm my right eye. I wore these indoors and outdoors for eight solid years, and sometimes still require them.
Next, I started having absent seizures which caused fainting and facial disfigurement. It was decided that I was having diabetic seizures despite not being diabetic at that time. I was prescribed seizure medication, which I stayed on for about 18 months. This medication made me so sick that I could not do my job, forcing me to go on FMLA. Eventually, the corporation that I was working for let me go. Dodging long term disability, they claimed that I was laid off due to drinking issues (rumors which they had started), rather than diagnosed health issues. And so began my need for assistance with day-to-day tasks. Finally, I was tested for epilepsy, which turned out not to be the cause of my episodes.
After more episodes, I managed to get an appointment at John Hopkins in Baltimore. This is where I was finally diagnosed with hemiplegic migraines. Upon returning to Atlanta, I started seeing Dr. Kelman for my hemiplegic migraines. Unbeknownst to me, Dr. Kelman had been conducting an unscientific study on twenty of his patients, including myself. I was never informed that I was part of a study, nor had I given the informed consent necessary to participate in a legitimate study. Nonetheless I started receiving trigger point injections of an experimental medication he was using. He purposefully deceived me about what medication he was using.
As my migraines and their symptoms became increasingly disruptive, Dr. Kelman brushed off any new symptoms. Then I showed up at his office one day while having an extremely debilitating and painful migraine. In his frustration with his experimental drug not working, he hurriedly gave me a series of injections without proper protocol, aiming incorrectly in his rush, and causing me even more severe pain. He then abandoned me in the room, unable to speak. I fled the office as fast as I could gather myself, knowing that something was very very wrong.
My husband found me later. I’d made it home somehow, but my brain was fuzzy. My right side had been struck with palsy and I could not control my muscles. My right eye was far worse than usual. My husband immediately called Dr. Kelman, who promptly told him to find a new neurologist and hung up on him. This is how I went from suffering rare migraines to becoming a Traumatic Brain Injury survivor. It was a dark and difficult time for me.
I finally found the right doctor at the Shepherd Center in Atlanta. I credit Dr. Darryl Kaelin with saving my life. Despite the damage to both hemispheres of my brain, he led me through a rehabilitation process to teach my brain the neuroplasticity that I needed to become a functional person again. Dr. Kaelin became so instrumental in my care that I eventually moved to Louisville, KY after he moved there.
Since then, there have been ups and downs. I thought I was finally in the clear when I began having such severe pain on my right side that it required gamma knife radiation.
Despite all of this, I am optimistic about my future, thanks to the treatments that I receive at UofL’s Frazier Center with Dr. Kaelin, and at the Cleveland Clinic. I want others to benefit from all that I have learned, and hopefully avoid the road blocks I’ve encountered along the way. This is why I founded the Gemassist Brain Awareness Foundation.
Deborah Marie is available for additional media opportunities, including podcasts, written articles, speaking engagements, and video testimonials. Learn more about the the non-profit Foundation she started at www.Gemassist.org.
