CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

To me, John was a kind, loving, funny, talented, and cool older brother. But as I reflect back on his life, I realize what a profound impact he had on me and how I was never able to thank him for all the wonderful roles he played in my life.

As a little kid, whether I was being physically assaulted by neighborhood bullies or mentally terrorized by mean girls, he always tried to protect me. As a teenage girl, he taught me to respect myself and demand respect from the young Remembering Johnmen around me. As a young woman in my twenties, he taught me to appreciate different cultures, forms of art, music genres, and films that would ultimately shape the way I now see the world. And lastly, as an adult, he gave me the gift of perspective. As long as John was doing all right, everything else was manageable.

John was a self-taught artist. At the age of twelve, he learned to mix and discovered a love that would last an entire lifetime. When I picture him, he’s in front of his turntables, his mind in a distant place, dissecting music and recreating masterpieces. My Mom and I joke that he is now in his own personal heaven, the Amoeba Records in the sky. We truly believe that his love of music kept him alive throughout so many tough years.

His musical style combined elements from Hip Hop, Rare Groove, Electronica, House, World, Rock, and Jazz from multiple eras. He had an abstract vision and had amassed a mammoth musical collection of over 4,000 vinyl records and hundreds of music mix compilations. His massive body of work covered multiple eras and genres of music and film, including “Turnstyles,” a vinyl mix series from 1997-2007 with over forty five of John’s DJ mixes and over forty eight hours of music; a full length film titled “Cycles”; and “What It Is,” a track created with Jeremy Sole on Om Record’s “Deeper Concentration,” a compilation of DJs including the Beat Junkies and Mix Master Mike of the Beastie Boys.

Like many great artists of our time, John’s unique artistic talents were also fueled and plagued by his epilepsy. His mind traveled to the darkest depths to create amazingly beautiful works of musical art. He could take any record and recite the musical influences or samples used to make each song. I often thought of how amazing it would be to hear music through his ears. He was able to pick up on things that most people didn’t understand or recognize. He was a multi-media conductor manipulating speeds and elements into new works of art.

Neither John nor my family would want you to read this story and feel sorry for him. Despite all the hardship he faced with epilepsy, he never wanted anyone’s pity and I can never remember him once complaining. He had a never-ending sense of curiosity for the world and a contagious sense of humor. He had many friends throughout the artist community and a huge family that adored him all throughout his life. In many ways, John was truly blessed.

The Final Straw

A few weeks ago, John had another grand mal seizure. He vomited, passed out, and aspirated vomit. Since John had no memory of what happened to him during a seizure, he had no idea that this had happened and that the liquid in his lungs would ultimately develop into pneumonia. The fluids in his chest became infected and expanded to the point that one of his lungs collapsed. Ultimately, the chest pain, pressure, and stress were too much for him and he had a heart attack. Fortunately, my Mom noticed that something was wrong and had him admitted to the hospital just in time. He wasJohn hospitalized for a week and began to heal. Chest tube surgery allowed the fluids to drain and he was released. We thought that this would be just another tragic chapter in John's life but it turned out to be the beginning of the last one.

Insomnia was another unfortunate side effect of his epilepsy medicine. He would take a long hot bath to relax his body and mind. Though this scared us terribly, we knew that it was one of the only things he could do to fall asleep. We think that this was the case that terrible day. Unfortunately, he was so weak at this point from his last hospitalization and when he had a seizure in the bath; he wasn't strong enough to survive.

We Need Your Help

Epilepsy is a silent serial killer. It affects as many people as breast cancer and takes as many lives... but so far, little research has been done to find a cure.

It slowly stole John’s life from him. With each violent attack it damages parts of the brain that store short and long term memory, allow for cognitive functions, and regulate emotion. Since John had no memory of each seizure, it was hard to know how often he was having them. He didn't want pity from anyone and typically did not share the reality of his disease with friends. He also tried to save my family from the pain he knew we felt to see him so sick.

Research to find a cure for epilepsy is severely underfunded and the disease is misunderstood by the general public. Most people have no idea how devastating this disease is and assume that drugs can manage the symptoms. For some people, this is the case, but for many it is not and the drug side-effects are so miserable that often we questioned which was worse—the drugs or the disease.

When John developed epilepsy in his late teens, we immediately set out to figure out how to fix the problem. It was disillusioning to find a severe shortage of epilepsy research, funding, and hope.

John would walk and talk during seizures. He often awoke to find himself in unfamiliar surroundings like the sidewalk outside his apartment building or the couch of a stranger’s apartment who accidentally left their door unlocked. Those are only a few of about a thousand episodes that happened to him when he had seizures. Can you imagine waking up and having no memory of what just happened to you for the last three minutes or three hours?

The other countless victims of this disease are the families that watch the people they love suffer from this devastating disease. My family lived in constant fear that something would happen to John. Each week was considered a success if we didn’t get a call from the hospital or his landlord. I can’t tell you how many hours my parents and I have spent in hospital waiting rooms. My Mom, a saint, amazing mother, and role model, was his biggest champion. She never gave up trying to get him help, garnering support, finding the best doctors, or researching new technological advances. But in the end, even the most unrelenting love couldn’t save him.

Thank You

Thank you for reading and remembering John. Mom, Dad and I hate to think that he would only be remembered for how things were during these last years. He had so many wonderful friends that he truly loved. Epilepsy unfortunately tarnished many of those friendships and memories of who John really was.

John’s story needs to be told. People should know the extent of what he lived with and how truly brave he was. It's our hope that sharing his story might help other families going through the same thing to know that they are not alone. Reading about him and raising money to end epilepsy allows John’s memory to live on.

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Katie, John's sister

 

 

CURE CURE is a non-profit organization founded by mothers of children with epilepsy who joined forces to spearhead the search for a cure.

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