Saturday, May 15

My son Felix was 20 years old when he died. Better Awareness of Epilepsy Could Have Saved You | Death and dying


IIt is March 9, 2017. I am sitting in an ambulance, holding a plastic cup containing tea from a machine. They just told me that my son is dead. I’m in a kind of paralysis. I feel the cool, smooth vinyl of the cart I’m sitting on below me and idly glance at the equipment and posters around me. Watch your head. Sharps bin. No Smoking. Clinical waste.

I am alone, apart from a paramedic who is with me. At this particular moment, my world has been reduced to the inside of the ambulance. An alienating sense of shock and horror has washed over me, reducing me to a stiff, silent state. After a while, they helped me out of the vehicle and took me to a nearby Victorian building. I am led into a wood-paneled room where I sit on a sofa.

I wait here. It’s dark outside. My husband is more than 200 miles away and it is already 7pm. A friend is on the way and they told me that we also have to wait for the police. It is about the sudden and unexpected death of a young student who has not been seen for a few days. They will have to investigate.

Almost four years and I’m standing on top of a hill in Devon overlooking the River Dart estuary. It is low tide and the river is a silver dribble in the middle, with marshes on either side. I can see the sea in the distance and to my left is the dark outline of Dartmoor.

Rows of rectangular mounds are dotted over the hillside. This is Sharpham Meadow, where Felix rests. I feel lucky to have been able to bury him here. It is a place that has meaning for us. It connects, across the river, to our home upstream on Dartmoor and downstream to the sea, where we spent so much time as a family.

This cold winter day, my visit is short. The wind is howling like a gale as it usually does here and I don’t feel like lingering. There is a sole, very early, primrose in bloom on his grave, looking quite disheveled. I stand for a few minutes, looking out over the estuary and thinking of times past: swimming in Castle Cove in Dartmouth at the mouth of the river; walking along the cliffs across the mouth of the estuary, where Felix and his brother Lucian played inside the Daymark, an ancient stone tower built to guide sailors to port.

On warmer days, when the tide is high, I often go down to the river after visiting Felix and swim in the estuary from where I can look up and see “his” hill. Somehow, as I submerge myself in the water, I return to a kind of primordial and elemental essence, and I feel a deep connection with it. It is as if I become part of who he is now, a body on the ground. I think of that line from Genesis: “Dust you are and to dust you will return.”

Felix, was born in 1997, my first child. I never knew there was room for so much more love in my life. He was an adorable blob with thick dark hair. Motherhood was a bit of a shock, as I think it is for most people. She struggled to feed herself and, at just two weeks old, returned to the hospital after a diagnosis of “severe growth retardation.” He had to be force-fed through a tube, but he went through it and soon gained weight.

And so began a wonderfully normal childhood. The black hair she was born with fell out, to be replaced by thick blonde locks that fell in a pudding bowl style. He was a very funny kid. What he liked the most, when he was about three years old, was to sit down and “play” the piano. He struck the keys and sang, pausing every now and then to turn the page of music, as he had seen me do. Then he turned and looked at his audience, anticipating the inevitable applause. The usual stages followed. Kindergarten, elementary school, high school. Normal family life.

Then one night in 2010, Lucian ran into our room. Felix, then 13 years old, had fallen out of bed. We ran to his room to find him unconscious on the floor, shaking. We called an ambulance and when it arrived, the seizures had stopped. It was clear that he had had a seizure. We were told it might be something unique, but sadly it wasn’t and he started having seizures regularly, both while sleeping and awake.

During Felix’s adolescence we had many visits to the pediatrician and then to the neurologist, experimenting with medications, different doses, etc. His seizures were never adequately controlled. It was difficult for him and it affected his confidence, but throughout the process he never complained or asked, “Why me?” He found it more difficult to make friends as he got older and he became quite isolated, spending a lot of time in his room. I was very worried about him.

Despite his problems, Felix got a place at the University of Leicester. He got off to a false start studying law, then switched to film and art history. While spending time at home before starting again in Leicester with the new course, he joined a community theater group on Dartmoor and began to recover. They welcomed and nurtured him, and he gained confidence, confident enough to audition when he started college again.

Felix photographed with his mother Sophie as a child.  They are outdoors in winter coats, a river behind them.
“He had started writing scripts and loved being part of the college theater scene”: Sophie with her son Felix. Photograph: Karen Robinson / The Observer

I was so proud of him. Going through auditions and going on stage, when he could have a seizure at any moment, was quite an accomplishment. She also started writing scripts and loved being a part of the college theater scene, making friends, and belonging. It was brilliant. For my beautiful son, who had suffered so much, life was finally getting better.

We were unable to attend their first university theater performance, which was in Antony and cleopatra, set in a nightclub with a drag queen who plays Cleopatra. His godfather, Sean, had that particular honor. However, he was excited to go see his next production, which was the musical, The producers.

I had arranged to meet Felix a few hours before the show, but when I arrived, he was not there. I waited a bit, but he didn’t show up. I tried calling him. No response. I found the theater where I knew they were rehearsing and they told me they had been trying to locate him for a few days.

I started to feel an icy fear in my stomach, but I tried to stay calm. Surely there would be an explanation. We called his residence and they told us that someone would come check his room and call us. I waited, trying to suppress a growing sense of panic, and heard nothing. So I decided to drive there myself. Traffic was frustratingly slow. Finally I arrived and the first thing I saw was an ambulance. Feeling sick with fear, I jumped out of the car and ran to his building where there were several people, including a paramedic outside. They didn’t let me in and they didn’t tell me what had happened. I tried to push them, but the paramedic stepped forward and said, “It’s not very nice there, I wouldn’t.”

Then another paramedic came out of the building, hugged me and said, “I’m so sorry. Has died “.

They took me to the ambulance where they gave me a cup of tea and from that moment I began the new stage of my life. The phase without my precious and beautiful son.

A postmortem concluded that Felix’s death was due to SUDEP – Sudden Unexpected Death in Epilepsy. The charity SUDEP action defines it as when, “A person with epilepsy dies suddenly and prematurely and no reason for death is found.” The cause is not yet known. Researchers are investigating a variety of possibilities, such as the effect of seizures on breathing and the heart. Deaths often occur at night and without witnesses. Felix’s body was found slumped on the side of his bed. Three people with epilepsy die every day in the UK and it is one of the most common neurological conditions in the world. And yet few people have heard of SUDEP.

The risk of SUDEP was never mentioned by any of the doctors or nurses who treated Felix. And yet, it turned out that he was in a high-risk group, being a young adult who had seizures in his sleep. The main risk factors for SUDEP are the following: having generalized tonic-clonic seizures; have nocturnal seizures, be a young adult, develop epilepsy before age 16, and be a man. Felix was all of that.

Who knows if his death could have been prevented? Certainly, if his seizures had been better controlled, he would have been less at risk. Throughout her life, her care had been erratic at best, and perhaps if she had been more consistent, she might have had fewer seizures. Thousands of young lives are cut short each year around the world due to SUDEP. Many of those who die are, like Felix, students, away from home for the first time. SUDEP Action believes that these deaths could be reduced with better education. After all, if you don’t know the risks, there is nothing you can do to reduce them.

Dealing with the death of Felix has been the biggest challenge of my life. Shortly after his death, I found myself writing letters to him. He couldn’t accept that he had died. It was a way of keeping him alive, of perpetuating the fantasy that this hadn’t really happened. I told him what he meant to me, I told him how much I missed him, how angry I was at the injustice of his death. I told him about the banalities of my life and told him how the world was taking the news of his death. I told him in detail about his funeral. I shared my daily experiences with him, my walks on Dartmoor and the coast, and my baths in the Dart River that I found increasingly beneficial in coping with pain. I asked him many questions. Where was it now? Could I still feel things? How was death? I had pain? Did you know when he was dying?

My memory was clouded by pain, which I found deeply disturbing. My memories of Felix were all I had left, and yet I felt him fade away. It was as if I was in a boat, looking at it in the water. Little by little it was sinking, then drowning, being slowly consumed by the water and disappearing from sight.

Now, almost four years later, Felix’s physical absence tortures me less. I have learned that he is always part of me, deep inside me, like when he started as a small seed in my body. What matters is his presence in me. When I want a kind of physical and visceral experience from him, I go back to the river, where, somehow, in the water, I become a non-person, an absence, like him.

For more information about SUDEP, visit sudep.org.

Sophie Pierce’s memoir on the loss of Felix, The Green Hill: Letters to a Son, is being crowdfunded with Unbound. For more information visit unbound.com


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