DIANE BASTY: My Epilepsy Journey
In her own words
In 2012 I was diagnosed as an adult with Epilepsy. Looking back, there were warning signs indicating I had some form(s) of Epilepsy throughout my formative and early adulthood years. Verbal repetition, short term memory loss, odd eye and body movements, loss of consciousness, sensitivity to sensory input,nausea, auras and balance issues, etc…
Everything came to a head when I was driving to work early one weekday morning. (I was a full-time school-based speech and language pathologist). I remained conscious as my forearms and fingers curled up and my toes began to lose sensation. I had to drive with my elbows and upper arms to reach the parking lot of the nearby fire station, hoping someone was there. I thought I may be having a stroke due to my age. I flashed back to times this had happened, having attributed it to being tired/stressed. I could recall decades earlier as a matter-of-fact. Now, I am wondering is there more to this? Unfortunately, I had to continue driving. Noises from cars, me going in and out of various stages of consciousness are a blur. I knew time was of essence for my survival. By the grace of God, I made it to my High School via a 4-lane highway and twisty back road entrance. My last conscious thought was to aim my car to the parking lot. The last thing I remembered was someone shouting ‘turn off the car’. I awoke in the back of an ambulance totally confused yet coherent. The school nurse had injected my leg with an Epipen making matters worse. I came to consciousness again in the hospital ER only to discover I was laying on a bedpan. Apparently, I lost bladder control in my vehicle. The morning route to the high school I had driven with my elbows and upper arms. I was told the first question I asked in the hospital was whether or not I hurt anyone. No! Not even a scratch to my car. I was asked to retell the story numerous times in my 9-day stay in the hospital. DO you believe in angels now?
Let’s talk about my hospital stay. My first night was spent listening to a screaming woman in a nearby room. I was tethered to a bed that would sound a buzzer if I moved. A pronounced sign was hung stating I was a fall hazard. As both of my daughters arrived from long distance, I could read the concern on their faces. I learned I was put in the psychiatric ward and I was having uncontrolled seizures. Very early that first morning I was wired up for an EEG. I was given feedback that having a seizure in front of the technician followed by an EEG was the best possible scenario to get a good read on what was happening. I was diagnosed with right temporal lobe complex-partial Epilepsy. My seizures had escalated and crossed over the midline of the brain. My stay was 9 days in the hospital until my seizures were under control with medication. My daughters had me placed on an appropriate floor for my recovery.
My daughters took turns staying with me and sleeping with me for about a month because I lived alone. I wore a heart monitor because of interrupted and dangerously low function at night. I remember being woken up several times a night when my heart rate went below 30. The new medications left me a fumbling, bumbling mess. I had to take medical leave from a job I loved. Sad times.
From then to now I have gained knowledge and strength on how to deal with this chronic neurological condition. The ins and outs of medications and related side effects, record keeping, self-care, and educating those around me. My husband left me because he couldn’t deal with it. I was able to return to my job for one year following a battle with my school district as to my rights to continue to work. Three friends provided my transportation for four months until the time my driver’s license was restored. I established involvement with my local epilepsy organization, Epilepsy Association of Western and Central Pennsylvania, which includes teaching adults with active Epilepsy as a Peer Educator through a University Grant.
I would not be here as healthy as I am without my local Epilepsy Association. I am thankful for having my own strength and the love of family and friends. I am grateful every day.
Epilepsy Association of Western and Central PA is a founding member organization of Epilepsy Alliance America