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Living In Fear

Illustration for article titled Living In Fear

Seven years ago, my little brother was diagnosed with epilepsy. He had been having seizures for a while before the official diagnosis came (for those who do not know, epilepsy is a seizure disorder with no discernible cause or underlying issue), and we suspect he’d been having them in his sleep before we even noticed them. He immediately started going through tests. He had full blood work done; any high tech machine the hospital had on hand was used to scan every bit of him. Multiple MRIs, some CT scans, everything. During this time, we learned some interesting things about his physiology.

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Now, my brother has always been smart. He is very artistic – been composing his own music and writing/drawing comics since forever. When he was just a toddler, my parents noticed that he needed a lot of help with things. He just did not learn quite as fast as the other kids did, and he certainly needed a lot more attention than I did. They got him into speech therapy as soon as they could, and we were lucky enough to find a couple therapists over the course of his childhood who were just fantastic. Eventually, he caught up. Reading was one of his favorite activities, and he seemed just like any other kid. Sometimes, especially in High School, he would complain that I was better than him at everything, and I think there was some resentment on his part. Things came easily to me, especially academics, and he really had to work hard. However, work hard he did!

What all the testing discovered, however, is that he is missing a sizeable chunk of his brain. It is just gone – he was born without it. The doctors said that if they had discovered this when he was a baby, they would have just told my parents that he would never live a normal life, because people just do not recover from something like that. My brother did. He has essentially rewired his entire brain. Granted, there are still things he struggles with, but part of that is also attributable to his medications.

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Once the doctors discovered this, they said “Well, we suspect it’s due to his brain condition (no SHIT, Sherlock), but we can’t be 100% sure, so he has epilepsy and we’ll start him on anti-seizure meds.” This cocktail, while it has been changed and tweaked over the years, has always been strong. It slows him down, mentally and sometimes physically. Nevertheless, the seizures are still not fully under control. For a while, we thought he would grow out of it, but he will be turning 23 this year and still cannot get his driving learners permit, because you have to go 6 months without a seizure in order to start learning to drive again. The longest he has gone is 5 months.

While the seizures are rare, they are still scary. They have gotten worse over the years – he went from having absent seizures to seizures that are close to Grand Mal. Sometimes he gets some warning, and can sit down. Sometimes they happen and next thing he knows he is on the floor of the subway station with a stranger and a bunch of EMTs. That really did happen, we think he’s got a guardian angel because the woman who saw what was happening was epileptic herself, knew what was going on, called 911, and stayed with him until he was given the all-clear. This happened when he was visiting me, while I was at work, with no access to my cell phone, and he had two others a couple of nights later. I am not sure I have ever been so scared in my life, until now.

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Two nights ago he fainted (my parents were talking about tick bites, he is the most squeamish person on the planet, not sure what they expected), came to, and then had a seizure. This is typical for him, and is usually not cause to panic –it is just our life. This time, however, he stopped breathing. Epilepsy does not directly kill people, but what happens during a seizure definitely can. Ceasing to breathe is, as I am sure you all know, a big fucking deal. Fortunately, he recovered quickly and is now doing well. He is even frustrated that my parents insist on lining up a babysitter for when he has home alone next week. He gets it, he will tolerate it, but he is 23 – of course, he is going to complain.

The worst part? There is nothing I can do. So I spend my days worrying, wondering whether the next phone call I get is my parents telling me the worst has happened. There is no cure; there are only meds and treatment. I call him frequently – he is my best friend. He is the bravest person I know, living with this awful condition, and still pushing on. Now he is in college, and while it is taking him longer than the average student, he will graduate. This summer he got an internship learning video editing (which he is already really good at) from a professional. Someday, he might get a good job (and won’t be denied insurance due to a preexisting condition, thanks Obama!), and be able to live on his own somewhere with good public transit, and decent hospitals nearby. We joke about him moving to NYC and completely freaking my very protective mother out. He worries that he will never get a girlfriend, and definitely drops hints that he would not be averse to having a dog that is trained to detect seizures. Not for the help, but because he wants a dog! Life, for him, is as normal as it can be.

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Except for the fear. The fear means life, for all of us, is never ‘normal.’

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