Just live

Today marks the 23rd anniversary of my brother Eric’s death. With that in mind, I am sharing the following piece, which I wrote in August 2003 for graduate school. (Since then, I have made only minor adjustments.) If death scares you, there’s no need to shy away from reading on. This piece is not about my brother’s death; instead, it is celebrating his life. I hope you get something out of it.

My brother’s life wasn’t fair. He was unable to enjoy many of the experiences that most of us take for granted. But instead of complaining about what he couldn’t do, he treasured what he had.

I started thinking about this recently after a conversation with a close friend. We were talking about my older brother Eric, who died in 1988 at the age of 21. As I said the words, “He always seemed happy,” it struck me: What in the world did he have to be happy about?

Eric had looked like a healthy, broad-shouldered man at 6 feet tall and 190 pounds, with a thick mass of dark curly hair, deep brown eyes, and a generous smile. Nothing looked wrong. But something was—dreadfully wrong. Eric had epilepsy.

Most of the time, Eric’s body functioned perfectly, except for little spells that occurred, sometimes once every few days, sometimes once every few minutes. During these “absence” seizures, Eric would go blank and lose awareness of his surroundings for a few seconds. Usually, nothing drastic happened. He might tip his breakfast spoon and get milk and Cheerios on the kitchen table—nothing a dishcloth couldn’t handle. Our family quickly learned how to stop a conversation in mid-sentence, to pick it up again when he was “back.”

And so the everyday routine continued—until a real seizure hit. A “grand mal” seizure. Actors try to recreate these on television: stiffened body parts jerking uncontrollably, mouth foaming; inevitably, someone tries to stick a spoon in the person’s mouth. The portrayals are pretty accurate, as far as they go. Sometimes my brother also lost control of his bladder. And he usually slept for seven or eight hours afterward, exhausted.

The seizures always hit without warning. To try to control them, the doctors started Eric on medication when he was just nine months old. Back then, it was one tablet, which my mother had to hide in his food to keep him from spitting it out. By the time I was old enough to be aware of the situation, Eric was taking as many as 12 pills a day. That number is according to my mother: all I remember is him popping a handful of multicolored capsules. But Eric was one of those epileptics whose seizures weren’t controlled by the drugs. Usually a grand mal seizure hit every one to two weeks; sometimes, two in one week.

As Eric’s younger sister by six years, I was usually at home with him. On edge, I listened for the crash of a fall… waiting for a seizure to hit, so I could try to jump to the rescue. Any situation was potentially dangerous, but especially those where he was operating machinery or holding something sharp, like a kitchen knife. Even when he sang in the high school chorus, I was all nerves. There he was, standing on the top riser. All he had to do was have a spell and lose his balance. But he just kept singing.

The medications had side effects. One drug made his gums swell around his teeth, so that he had to have his gums trimmed. The drugs also made him drowsy, so even though he was intelligent, he struggled with school. He did, however, manage to graduate, and he celebrated along with the rest of his class.

After graduation, Eric got a job at the local auction house, where he brought the items out for display and carried them to the highest bidders. That job didn’t last long though, after a couple of seizures and broken items. So Eric went to the Carroll County Association for Retarded Citizens (now The Arc of Carroll County), where he did menial assembly-line work, like counting 10 washers to a bag. As a 12-year-old, I found this insulting. My brother wasn’t retarded, and yet he was spending his days with people in wheelchairs who couldn’t feed themselves, people who couldn’t even talk right. It wasn’t fair! But Eric loved it. He made new friends, and he made a little money.

The association eventually found a job for Eric. And what a job it was! He worked in the kitchen at Western Maryland College (now McDaniel), washing dishes for two years. I despised riding along with my mother to pick him up after work: he reeked of the kitchen’s greasy smoke and garbage. But he didn’t complain about the smell or about the skin peeling from his hands because of the hot water and sanitizers. He was making his own money, out of the house for several hours at a time.

What did Eric have to be happy about? He didn’t own much or have a career, but he had a high school ring and a job. He couldn’t get his driver’s license, but he loved riding the lawn mower around our yard. He never had a real girlfriend, but he had a family and a church congregation who loved him.

Although epilepsy finally caused my brother’s death, it never claimed his life. While I was so angry about how unfair it was, my brother just lived. And he seemed to enjoy every minute of it.

As an update, I’d like to add that several years after I wrote this, my family found a short letter my brother had written to God, asking God to take away his epilepsy, should that be acceptable in God’s big plan. So my brother did indeed struggle with the circumstances he was given. But I don’t remember seeing that frustration very often at all. He seemed to understand that life wasn’t always fair, and he made the most of his life. And I think that’s a lesson we can all put into action.

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