Seizure Diaries: The Day We Buried My Dad

Seizure Diaries: The Day We Buried My Dad

The seizures took over my senses for the third time that day and I was a foggy mess for the rest of the trip back to York, PA. My dear wife, Stephanie, drove us back to our house. What a day it had been. We buried my dad.

Dad was an enigmatic figure in my life, full of anger and sarcasm, and opinions. Other times he was tender, understanding and loving. You just never knew which dad would show up. He gave all of us embarrassing nick-names and would make fun of us for minor infractions of the family “rules.” The rules I remember the best had to do with table manners. One of the inviolate rules was NO ELBOWS on the table. If we were within reach, he would grab our forearms and slam our elbows on the kitchen table. It made the China and silverware rattle and it hurt, our pride was more damaged than anything. It didn’t take us long to get with the program. Other times he wanted to hear explicit details about our day, making us feel important for that air time in our big family.

I have become a prolific photographer in the past few years and I got that bug from Dad. He always had his Leica camera handy for a color photo of flowers, birds, vistas, or the kids. I would love for my photos to compare favorably to his. My brothers and sisters think I take bird pictures better than Dad, because I am more patient, which is true.

Over the years there have been a few sides of Dad that few others in the family knew or saw. One night, when I was a teenager, Dad heard noises and came into my room. He found me on the floor shaking violently and lay me on my side, my head on a pillow. He dragged my body away from the bed and side-table. A roommate of his at Kent School in Connecticut had been an epileptic and Dad had been instructed on how to handle things to protect his roommates from injury during a seizure. I never knew he had those important soft skills.

The next day he made an appointment for me with a neurologist at Johns Hopkins Hospital.

After a brief admission office interview, the nurses took me to a clinic where I got a complete MRI, (Magnetic Resonance Imaging), and EEG, (Electroencephalogram). When the results were reviewed by the medical staff, it was like a convention of doctors surrounding my MRI and EEG! They were debating what to do. What they had noticed was that I had what they believed was a congenital arachnoid cyst in my brain. The cyst was located on the frontal lobe of the left hemisphere of my brain. They also discovered an agenesis of the corpus callosum on my right hemisphere.

The doctors were not sure what to do. After a vigorous consultation among the medical team, my neurologist came over to my dad and me. He said that he believed I was having “nocturnal episodes,” perhaps triggered by emotional trauma.

Over the next nine years, I was prescribed various anti-seizure concoctions, none of which worked very well. My mom died and the episodes started again in increasing frequency. I was able to work and drive and lived a near normal day-time life. The nights, however, remained either calm or torturous.

Taking matters into my own hands

Finally at the age of 31, I made an appointment to see another neurologist. I wanted to consult with someone who specialized in epilepsy. After the new doctor gathered data for a baseline, we had a follow-up meeting. The doctor next took me off my seizure medications and scheduled for me to have a week-long stay in the hospital! For seven days I had wires and tape all over my head and body. I was under constant observation, night and day. My brain was having a V-EEG, (video EEG). During the nights I had a series of petit-mal seizures and several gran-mals. With each seizure I was asked to ring the bell for the nurse on duty.

The nursing records pointed the doctor to the specific parts of the V-EEG where I felt the most impactful seizures. The doctor looked closely at the recordings during these severe episodes.  At the end of my hospital stay, the neurologist officially reclassified my nocturnal episodes as “Epilepsy.”

Twice more in next few years the doctors put me through the V-EEG. The next time was to determine if I were eligible for surgery. The neurosurgeons wanted to see if the could safely remove the portion of my brain that was causing the seizures. After weighing the options the doctors decided that the position of the arachnoid cyst was too close to a knot of blood vessels, the resulting brain trauma from surgery might do more harm than good. The other V-EEG testing was scheduled to provide more data. My seizures were increasing in frequency and severity and none of the medicines were working. I wanted to know why.

Over the last 30 years, I have had numerous MRI’s. These periodic tests were to detect any changes to my cyst. From the baseline test, not much has changed. Lots of “IF’s” come to mind for me. If I had had episodes at a younger age, the doctors might have used the MRI sooner. And if the MRI were more acceptable in my youth, it seems possible that I could have had a shunt in my brain, draining it of harmful fluids. Without the cyst impeding its growth, my brain could have formed normally.  However, I was 22 at the time of my first MRI. In my case it was too late for anything to be done.  My cyst had grown to the point where blood vessels and my brain had formed around it. It was more dangerous to operate than to leave the cyst alone.

I was treated poorly by my dad those early years. He really did want to accept a child who was less than exceptional. I felt unwanted. All things considered, though, I am proud of my relative success in school and in life.

When Dad came with me to Johns Hopkins to talk with the doctors, they showed him the MRI images and the depression below my skull. They noted the extraordinary size of the cyst in my brain. He was shocked and ashamed of his former behavior. I will never forget the look of sadness and remorse in his face. It were as if he wanted to take back all of those nick-names he had conjured, and all of those insults he had hurled, and whippings he had forced upon me over the years. Now he had a deeper unawareness of my condition. He seemed to slowly understanding what I had been going through. I wasn’t a bad kid, I just needed help.

Forgiving him for his bad treatment of me was not easy, but I knew I had to make the first move. With the black and white images in front of him, his heart seemed to reach out and touch mine.

Right then and there I forgave Dad and things have been so much better ever since.

I made it down to Florida to see him in January, 2016 and what a blessing it was for both of us. He was in the hospital with another bad turn with congestive heart failure and I wanted to see him one last time. When I came into his hospital room, Dad’s eyes squinted in pleasure and joy as we hugged. He was truly glad to see me, as I was to see him. We had a good few days together, with the help of my sister, Nancy and nephew, Joe Caplan.

I was seizure free for the most part and that was a blessing. I even had the courage to speak up to him and scold him for some anger he showed to his wife. An aunt of ours had died and we had elected to keep the news from Dad, while he was in the hospital.

My dad’s ashes were split into two piles: one for his widow and one for his grave in Baltimore. At his celebration of life ceremony, many of us had stories — most of them complimentary of Dad’s accomplishments. It was a long hard day for me; one I’ve been thinking about for the past few years. I am glad I saw him a month before he died. It made the final goodbye on my terms.

My Short Speech at Dad’s Funeral

As most of us did, I had the typical father/son relationship growing up. But he taught me so many valuable lessons. That has stuck with me throughout my life. I always cherished every chance we got to have those father and son times together. Our relationship blossomed shortly after Mom died. Oddly enough, that is when I began having seizures. He came into my room one night, while having a seizure and he performed CPR on me. He later told me that he was familiar with this type of CPR from a former roommate, who had epilepsy at Kent School. Shortly thereafter, went to Johns Hopkins Hospital so I could be examined by their Neurologist. After my examination, a number of Neurologists talked with both of us about the results of what they found. Not only was I shocked by the images they showed us, but when  I looked over at Dad, I could see from the expression on his face that he was upset and hurt. From that very moment on, our relationship truly bonded as a father and son should. He finally understood my struggles and from then on he was always my “Rock.” His words of encouragement gave me the strength to keep going.

After Steph and I got married, Dad said that I married ‘wonder women’ and how proud he was of us. Steph, told me a couple of times that Dad always made her feel like one of his daughters, instead of being just an In-Law! He had that ability with every family member. But, just seeing when they spoke with each other, via phone or in person how he made Steph feel, I know he had changed for the better.

When Nancy, Joey and I went to be with him in Sarasota this past January, I walked into room and saw that big surprised smile on his face. It truly meant the world to me. Due to my disability, it had been over two years since I last visited him. Most of my brothers and sisters feel the same way I do: through it all I am blessed to have had him as my dad.