Purple

The brain is a highly complex thing and mine has been no exception.

Finally, after many months of feeling like crap and dialysis three times a week, I was actually in Toronto for my kidney transplant. My father was a match and everything was a go, all the blood tests were done and I had been admitted to Sick Kids Hospital. It was May and spring was in full swing. Perfect time to receive my new kidney and a new lease on life.
Most of my family were in Toronto with me, staying at Ronald McDonald House and excited for my father and myself.
I was just finishing up my final dialysis run and that was just fine with me. I wouldn’t miss it.
As my nurse disconnected me from the machine, for what I thought would be the last time, I stood up like usual for my blood pressure to be taken, to be weighed and to leave the unit with a wave and a smile. Although I felt nervous about the surgery, it was a good kind of nervousness.
It had seemed like an uneventful dialysis run, nothing out of the ordinary having happened. I rose and the next thing I new I was coming out of a daze, foggy and confused. I was lying on a stretcher, in a room with noise and hustle and bustle often found in hospital ICU’s.
“Did I have the transplant?” I asked my mom this question, confused as I was, but sure this could be the only explanation. Nothing was making any sense to me at all. I couldn’t pinpoint why else I would be waking up here.
“No,” my mom answered my question in a quiet concerned voice. “You are still in the dialysis unit. You had a seizure.”
This made no sense. I didn’t have those, had never had one in my life. Why now? I could barely form a coherent thought in that moment. Her information bounced off my brain and landed with a thud.
Within moments I was rushed off to the CT scanner. I slowly began to wake from the fog as I was slid under the machine.
Back in my room my family waited patiently for me to return from my final run. They were just as shocked when they heard what had happened.
My mom and the nurses had been shocked to see me stand up, attempt to walk to the scale, and then fall to the floor of the dialysis unit, shaking uncontrollably. My poor mother, seeing me flailing around like that in front of her very eyes.
I felt like I had been hit by a truck, as they brought me back to my hospital room. The sharpest memory that has stayed with me, my tongue had nasty sores all over where where I had bitten into it as the seizure took over my body.
The doctors were just as stumped as all of us. There was nothing catastrophic to see on the cat scan, no tumour to explain why or how this could happen, but why did it have to happen now?
I was hours away from an important surgery and freedom and a better future, but wait…halt…not so fast.
The transplant team got together and discussed my case. Finally, they came to the conclusion that they did not feel comfortable going forward with the transplant. As it stood, with nothing to explain why I had experienced a Grand Mal seizure moments after dialysis, it would be too risky to do anything.
My family and I were devastated. Sure, the doctors and nurses reassured us that if everything was fine, if I had no more seizures in the days and weeks to come, the transplant could and would be rescheduled.
As if this weren’t enough, a message from my sister back home informed us that she had come home from school to find our house had been broken into. This was almost too much to handle, all in the same day.
I was put on Dilantin for several weeks after that and nothing more happened. My transplant was quickly rescheduled for one month later and it all went perfectly. I have had my kidney for seventeen years and haven’t had a single seizure since that May day. Just one more medical mystery in my medical history. It was never determined why exactly I seized that day. dialysis can sometimes do strange things to the body and mine had been through a lot that year. I will likely never know.
Fifty million people are estimated to live with epilepsy around the world and fifty percent of those cases the cause is unknown. People wear the colour purple on this day to show their support for people who live with the condition. I can say, on this Epilepsy Awareness Day, that I know what it feels like, but I really don’t remember. My poor mother and other loved ones are often the people who witness the seizure in progress and they are the ones who are left to feel helpless and scared.
Of course I won’t claim I know what people with epilepsy go through every day and how the condition effects their lives. I only had a small taste of what it must feel like. It does do a number on the body.
I hope for more and better medications and treatments for those who suffer with epilepsy. I just wanted to share my isolated experience with seizures on this purple day.
Do you or someone you know suffer with epilepsy? How has it effected your life?