You may have noticed the new look on the blog. That’s my new purple layout in honour of March being Epilepsy Awareness Month in Canada.
Here is the first part of Jesse’s story, as told by his mother Léa. At the start of the narrative, she was living in Cambridge Bay and Jesse was still in Iqaluit. (If you’re not familiar with this part of northern Canada, I will tell you that both these communities Nunavut are fly-in only; it’s not easy to get around.)
So yes, I first heard about the “first” seizure when Letia called me in Cambridge Bay. It had happened when Jesse was with friends, and it scared them, but Jesse didn’t want to tell me. The reason I have put “first” into quotation marks is that I later wondered whether it really was the first. For several months previous to that, Jesse had been sleeping inordinate amounts of time — 12-14 hours a day if he could — and still seemed groggy. I was very concerned, and talked with people I knew who had teenage sons, and a few of them said their boys had also been extremely tired in their late teens, so I just put it down to “growing”.
He went on Valproate first. At first, it seemed to work fairly well; but the epilepsy increased in intensity over time and his dosage had to increase too. The effects on him were awful. He was puffy in the face and fuzzy in the mind. His speech, which had always been deliberate, was now painfully slow at times. His memory was affected, both short- and long-term. And his sleep continued to have to be extremely long. If he didn’t get at least 12 hours, he was guaranteed to seize. So here he was, a grown young man, trying to find and keep work and to have a life. And he lost job after job after job because he seized on site, until the only work he could keep for any length of time was dishwashing in restaurants (because they always need dishwashers). In these jobs, he was repeatedly treated badly. Partly this was because dishwashers seem to be the whipping boys of the kitchen; but it was also partly because Jesse was so smart and personable, and he was expected to be a mindless drone. He would take the abuse as long as he could, then finally have had enough and say something and get fired; or the number of seizures would get people to the point where they felt they couldn’t count on him and he would get fired. Over and over and over.
So for years he seized as many as 3-4 times a week. He seized in traffic while riding his bike; he seized on, and fell down, staircases; he seized in the shower; he seized anywhere and everywhere. His body was covered in scars, he lost two teeth, he suffered numerous concussions. When you are 6’5” tall, every fall is a big fall. And yet he was incredibly patient and brave through it all. I know that he worried about his future and what epilepsy might ultimately do to him, but he always tried to minimize that in front of those of us who loved him. During this time, he was also, I am convinced, clinically depressed. All he had time for was sleeping and working (if he even had a job). If he stayed up to visit with friends or go to a party, he seized the next day. And he was dirt poor and had to rely on me for financial help regularly. I was happy to help, but this was extremely hard on his self-esteem.
The other thing that happened periodically during this time was that Jesse would become non-compliant about taking his meds. He hated what they did to him, and had periods where he was running out and didn’t want to ask me to help pay for them, so he would cut back and seize repeatedly. This was so painful for me. He would be taken by ambulance to the hospital, where they would report that his blood levels of the meds were far too low. So I would talk with him and he would be unwilling to discuss the issue, and upset to have me trying to tell him what to do. This went on for a number of years. I took to going with him to the doctors, just so I would be clear on what was happening.
His neurologist was getting a little short-tempered with him because of the non-compliance, but another doctor who was training in neurology, Susan Rahey, saw aspects of her own son in Jesse, and loved him, and decided to make him her project. It was she who talked to the company who made Keppra and convinced them to give it to Jesse free of charge.
That was a little over 4 years ago, and the Keppra was like a miracle. Suddenly, once they got the dosage right, Jesse was having only 4-5 seizures a year and at predictable times of day. He wasn’t puffy and groggy — he could sleep 7-8 hours and be perfect. His speech returned to how it had been before the Valproate. The only things that didn’t return were his memories. He had “lost” much of his childhood, and his short-term memory was spotty; he could have a conversation with you one day and forget it by the next. But he realized that he could use his cell phone to make notes about things he wanted/needed to remember, and it became a crucial tool for him. When he was home for visits, or when we went out for dinner in the city, I would make a point of telling him, again and again, the stories of him as a little boy so that, even if he didn’t remember them firsthand any more, he might remember my telling of some of them. I know Jesse wrote to you that Keppra gave him his life back. It also gave me my son back, for a while . . .
Go to Part II of Jesse’s story.