Jesse was a high school friend. We lost touch after he left town at the end of Grade 12. Years later, we reconnected through Facebook, and I learned that he had developed epilepsy shortly after we had lost touch. Jesse died this past November. This is Part II of Jesse’s story, as told by his mother, Léa. For the introduction, click here, and to read Part I, click here.
Soon after starting Keppra, Jesse found a dishwashing job that turned into bussing and waiting tables, in a restaurant called The Great Wall. The owner there, Patrick, took a real shine to Jesse, in spite of – or perhaps because of? – his epilepsy. Some people there didn’t have the time of day for Jesse, but Patrick stood up for him again and again, and Jesse worked there for almost two years, a record for him! During this time, Jesse and I would often talk about the fact that the better control of his seizures might mean he could have more options for his life. He had felt hopeless for so long, and was so down on himself, that at first he couldn’t even think of what he might like to do as a career; and he was afraid of debt. Then my younger sister, Carla, contacted him through me and said that she would help him financially if he had a dream he wanted to follow. This was an amazing moment, and jolted him out of his lethargy. He did a lot of thinking and decided to turn his deep love of trees and wood into a career in heritage carpentry. With Carla’s help, he began to live his dream, taking the heritage Carpentry program at the Nova Scotia Community College.
The next two years were wonderful to see. He remembered how smart he was, gained people’s respect, and began to feel as if he had a real future. He aced his courses, and became a real part of the towns where he lived, especially in Lunenburg (his second year of school). There he worked for people on their heritage homes and made true friends. He continued to seize 4-5 times a year, but this usually happened early in the morning and he could sometimes tell they were imminent, so the injuries were less serious than they had been before Keppra.
In the early winter of 2009, during Jesse’s year at the Lunenburg campus, we learned that his sister Caitilin and her boyfriend Matt were expecting a baby in the summer. Jesse had always been wonderful with young children. He would often volunteer to babysit friends’ children when the parents and his other friends were going out for an evening. I think he found real peace around little ones. He had talked with me, over the years, about how much he would love to be a father, but how he was sure it would never happen for him. Caitilin’s pregnancy was incredibly exciting for him. Friends have told me that at that point in time, his persona on Facebook changed, becoming softer and more emotional.
This past spring, after completing his courses with Dean’s List status, he moved to Halifax and within weeks had found work with a boss who understood his condition and supported him really well. He was on a crew with a foreman who really respected his work, and he started to grow lean and muscular. Even his walk was different – so confident and easy. He would come home for a visit and show his newfound muscles, and talk happily about the details of his work and his workmates. After years of walking on eggshells, I began to believe that everything would be okay – better than okay.
During this time, we had a great talk in which he told me that it was time for me to pull back in terms of watching his every move and worrying so much about him. I explained to him how difficult the past years had been for me: watching him seize so many times, hearing about serious injuries after they had happened, being insecure for so long about his compliance. But I also said that I knew things were different now, and that he needed to be his own person. I agreed to keep more distance, to ask fewer questions, not to “check up” so much. And I told him that if I “forgot” myself, he should remind me. It was a terribly hard promise to make, and I had to talk to myself all the time about it; I still worried about him constantly, but had to keep it to myself more. Once in awhile I would overstep, and Jesse would look at me with this smile and shake his head and say, “Mom . . . ” and I’d stop and apologize, and we’d laugh.
On Caitilin’s own birthday, our beautiful Jesse Moss was born. Jesse was the first person I called after the birth, and I could hear tears in his voice – he was overcome with happiness. The next Friday, Jesse rushed out to visit and we went immediately to the hospital. It was love at first sight. Jesse was almost afraid to hold Moss in case he might have a twitch and drop him. I told him not to worry, that I’d stay close by, and he relaxed a bit after that. We got dozens of photos of him holding the baby. That night he posted the following on Facebook: “Born @ 7:51pm — my 1st nephew, Jesse Moss. ♥ We use his middle name to avoid possible confusions, but the choice of his first name has me *speechless*. ♥ Tiny and lovely in every way, I see him so clearly in my mind. So these pics are for you, my friends, to share in my joy.”
In response to the photos he had posted, one friend said that Moss was “just beautiful”. Jesse replied, “The word “just” does not apply here, Dee. Nor simply. Moss is beautiful… and more. ♥” After that visit, Jesse came out every chance he had, and I have never seen him so totally happy and at peace. We were living in “the valley of love and delight”. Life seemed perfect . . . .
Go to Part III of Jesse’s story.