"It Could Be Worse"

When anyone is going through a hard time, it can be hard to know what to tell them. Someone gets a diagnosis of cancer, or hears that a loved one has been injured or killed in an accident - what can you say to comfort them? "I'm sorry"? "It'll be all right"? "You'll come through it"? "They're in a better place now"? What could possibly recognize the shock and the pain someone is going through, the horrible situation they've been cast into?

As an epileptic, probably the least useful such phrase I've encountered is "It could be worse." You tell someone, maybe someone close, about something that's perhaps destroying your life, or maybe only providing a series of unwanted obstacles. Their response? "Well, it could be worse".

"I had a seizure, I can't drive for the next six months."

"Oh! Well, at least you're not in the ICU. It could be worse."

Well maybe this could be worse. (Photo copyright US Navy?)

Well no, it couldn't. It COULDN'T BE WORSE DAMMIT. Thirty years ago I was in college, healthy, feeling like I could do pretty much whatever I wanted and looking forward to a life of staying that way. I was not looking forward to taking six pills a day, getting blood sucked out of my arms two or three or four times a year before mandatory doctor appointments, spending thousands of dollars a year on medication required for me just to function pseudo-normally - and let's not get into the side effects, we've done that already.

I mean, sure. I don't have the brain tumor the doctors initially feared. I'm not going into the emergency room or the intensive care unit once or twice (or more!) a year. I'm not taking four or five medications, I don't need a bed rail when I sleep, I can even drive in reasonable safety. There are loads of other people I know who are worse off than I am.

But "it could be worse"? What does that do for me? I'm not always as badly off as I think I am, but I'm not always as well as I could be either. I don't need to be babied. I don't want to be babied. But my epilepsy is real, and it has real effects on me, and I need you to get that.

Look, I get that you might not know what to say. And yes, saying something is better than saying nothing. Saying nothing at all is just cold. But you want to know what to say? Try these:

"That's rough. Need anything?"
"I hear you. Can I help?"

Just something to let me know that you sympathize, that you're listening, and that you're willing (sincerely) to be there and help out as much as you can if needed.

Life's not usually hard for me. (Like it can be for my friends Daisy and Nichole.) But it can be, and your recognition of that fact is a very basic way to help me, a way to affirm that what I'm going through isn't insignificant and harmless. Could you at least give me that much?

Baby I Can't Drive My Car

With apologies to the Beatles, at least for those of you who are old enough to remember them :-)

I've told you before about one of my first seizures while living alone. But it wasn't my very first one. That was much scarier.

When I moved out of my parents' house in 1993, I had a gray 1983 Chevy Cavalier that I was really proud of.

Like this one, only the hood actually closed.

It drove my brother and me from St. Louis to the Seattle area, and drove me back and forth to work a lot. A good car. The kind that you'd expect someone to name; but I never actually thought of doing that. (I probably would have named it Henry. Or Lucius.)

So my dad, the dentist, had recommended a dentist friend of his to look after my teeth, and after a while I decided I'd better go see him. The drive down wasn't bad. Parking in downtown Seattle was unnerving—I wasn't used to all those hills. (St. Louis isn't completely flat. Only mostly.) The dental appointment itself was what you'd expect; funny smells and uncomfortable things in your mouth. But I was used to that. It was the drive back that I didn't like.

Everett, where I was living, is about 25 miles north of Seattle, and you'd expect that the quickest way there would be I-5, which passed about a mile from my apartment and went straight through downtown. But having experienced traffic there, I decided to stay away from it and use State Highway 99, which was quieter. Man was that a good choice.

I must have been about halfway home when all of a sudden I felt the familiar tingling and numbness in my left arm and shoulder. I knew I was going to have a seizure, it was going to be the full-on tonic-clonic, and I couldn't do anything to stop it. And me driving fifty miles an hour down a major state highway.

Why, yes. Yes we are.

The last thing I remember even vaguely was slamming on the brake. I could still do that even though I couldn't move my arms anymore. I didn't have any idea of whether that would help, or what it would do, or even if I was actually just imagining it and not really doing anything. I just knew I needed to try and slow down. And then twitch, jerk, convulse, darkness.

Next thing I knew, I was in Group Health Lynnwood Medical Center. I don't remember much about it. I was fine. Not even a Band-aid. Someone had managed (apparently) to get to my car, stop it, call an ambulance, extricate my wallet and see my medical ID, and get me AND MY CAR NO LESS to the hospital. And I was fine. I couldn't have asked for a more amazing miracle. Or could I?

Once I began feeling better (I guess), I was worried about Henry. Or Lucius. Or whoever. After all, last I remembered I was flying down the highway and then jamming on the brakes. Surely something had happened.

But they said my car was in the parking garage. They even walked me out to it. Henry Lucius The car was completely fine. There was no scratch, no dent, no nothing. I was overjoyed! So who had done this for me? The people had left, they said. They had checked to make sure I'd be all right, and then they had left. I drove home, thankful, thoughtful, tired, scared, relieved.

I don't remember a whole lot of details after that. I knew I couldn't legally drive for a year. (That's a long time, in case you feel inclined to try it.) I checked out bus routes, called my insurance company to let them know the car was being parked for the rest of the year, resolved that walking would do me good. Then relaxed and felt thankful that I wasn't one of the 40 thousand or so who died that year of epilepsy and epilepsy-related accidents.

Most people don't get a miracle. Not like that anyway. I was sad that I didn't get to thank whoever it was that did this for me. I sometimes wonder about them. Who were they? Where were they going? Did they mind rescuing me? Do they ever say, "Hey, remember that guy we pulled out of the car?" I'll probably never get a chance to thank them, but it's not unlikely that I wouldn't be here without them. That's humbling.

Tomorrow is Thanksgiving in the US; I'll be leaving work and going home shortly to enjoy the holiday. As I do, I'll be remembering those of you who have stood by me in my epilepsy the last twenty-eight years, whether I know you or not. Whoever you are, whatever your reason—thank you. Thank you for everything.

Matt

Epilepsy And Discrimination

Have you ever had someone keep you from something you knew you could do, for no reason you could see?

People with epilepsy are often in this situation. Usually we are perfectly fine to do anything needed for an office position; we're not likely to have medical emergencies; and potential employers are required in the US, UK, and Canada to make reasonable accommodations to allow us to work.

In the US, the law covering this is the Americans with Disabilities Act. In the UK, it's the Disability Discrimination Act 1995 (in Northern Ireland) and the Equality Act 2010 (everywhere else). In Canada, each province has its own laws, as well as the federal government. Which law applies depends on whether the federal government has oversight of your industry or not.

And yet. In one of my first successful job interviews, I might have just narrowly missed experiencing just this kind of discrimination. I felt uncomfortable mentioning my epilepsy; I was afraid of what a potential boss might say or think. After I'd been told I got the job, I took a deep breath. "There's something you ought to know..."

Once I got the story out, my boss gave me a look. "I wish you had told me before I hired you." What was that supposed to mean? Would I have been hired if Mary had known about it? What kinds of issues did she have with my condition? I didn't have the boldness to ask her. Perhaps I should have; but at 25 years old, having just got my first real job, I didn't want to risk it.

I'm sure I'm not the only one in the same situation. Recently, Amtrak settled a lawsuit with a job applicant who had been turned down because of his epilepsy, even though he had been cleared for work by his neurologist.

Others, like Karen Martin, have felt the need to hide their epilepsy, and have suffered discrimination once their condition is made known to their employer or co-workers.

Why does this happen?

Partly, at least, it seems to be that most people don't know a lot about epilepsy, and don't know what to do for people with epilepsy. A survey done in 2013 for  the UK's Epilepsy Society revealed that nearly 60% of adults in the UK don't feel they understand epilepsy and its effects. I can't find similar results for North America, but I wouldn't be at all surprised if the numbers are similar.

The great thing about this problem is that it's something we can handle. If the problem is mainly one of awareness, who better to spread awareness than the patients themselves? But we have to own it; we can't be afraid of our own epilepsy.

It took me almost 25 years to come to that conclusion—I'll tell you the story about that next time :-) But it's OK to have epilepsy; it really is. And the more we talk about it, the more people know and the more comfortable they'll be.

Own your epilepsy, guys. It's the best thing we can do for everyone.

So I'm Scared

I tell myself it's OK to be scared, epilepsy is a scary condition. That doesn't make it any better.

I went to my neurologist yesterday morning. I'm having side effects from my current medication, Trileptal. More so, it seems, since I've lost weight. I was definitely overweight, I needed those 20 pounds gone; but the less weight, the more I'm affected by the amount of drugs I'm taking. My last set of blood tests showed my Trileptal levels normal, but on the very high end of normal even before taking my morning meds. Usually, a reading like that indicates that there's a good reason to decrease medication levels.

At the same time, I'm still having a few breakthrough partial seizures a year. Not many - but three or four a year is way more than I'd rather have. And way more than people close to me feel happy about.

So, after discussing all the issues, the neuro and I decided to change my medication. Vimpat is a new drug on the market for partial-onset seizures like mine. I'm going to gradually move from the Trileptal to the Vimpat over the course of the next several weeks, first raising my dose of Vimpat gradually, and then (only then) decreasing or maybe even eliminating the Trileptal.

That's a frightening thought. What if I get so over-medicated I can't think straight? What if I don't respond to the Vimpat and start seizing again? What if I can't drive for six months? Or a year? I haven't had a generalized seizure in over 11 years; I don't want to break that streak. And I'm petrified. I've told you guys what having a seizure feels like. DO NOT WANT. WOULD NOT ORDER AGAIN.

Rationally, I can tell myself, "It's OK. I've done this before." I've switched from Dilantin, to Depakote, to Tegretol, to Keppra and Lamictal, to Trileptal. Each time without any noticeable problem. I even have an appointment with my neuro in 5 weeks to check on how things are going. So there's no reason to believe this time will be any different.

Unfortunately, my mind doesn't need a reason to believe anything. I walked out of the doctor's office this morning, head high, totally happy at what I'd chosen to do. Then it hit me. What was I walking into? I'm not the only one affected by my health; and even if I were, maybe this isn't something to be taken as lightly as I tend to take things.

I'm scared. I'm sure my wife is scared. She's only seen me switch medications once before. I haven't done it for over a decade. What could happen? Anything, right? Too much medication, too little medication, seizures, side effects; all irrational fears perhaps, but all very real.

You know what, though? This is part of owning my epilepsy. If I'm going to be the one in charge, I have to accept how it can make me feel. It's OK for epilepsy to scare me, it really is.

Cause I'll scare it right back.

What If Somebody's Watching? What If Nobody's Watching?

There are two seizures I remember having in my first year away from home: one partial, one generalized. (Here's a quick explanation of what that means.) Both were scary, for opposite reasons; both depressing.

I don't remember any more which one came first. Probably the bigger one. It was first semester parent-teacher conference-time, mid-October. I had a whole series of appointments during weekday evenings, and I was ready to spend 30 minutes with each of the parents, talking about how their kids were doing. Did the parents know I had epilepsy? You know, I don't even remember now. My boss knew—though that's another story. So I'm not sure whether the mom and dad I was with actually knew what was going on or not. I don't remember their names any more, but I know they were nice people. Friendly, and their son (I remember it was their son I was evaluating) was doing well.

We had just started talking when all of a sudden I couldn't any more. I knew what was coming, but I couldn't do anything about it. Couldn't say anything. I felt myself slipping out of the chair, under the table; I felt my left arm jerking. And that was all.

I don't really remember afterwards. I think some of the other parish staff were there, making sure I could get up, getting me home. All I could think about was how embarrassed I was, how I had been so weak in front of the parents, how I had experienced something I never wanted to experience again in front of the people I least wanted to appear vulnerable near.

The other seizure was a partial seizure. This must have happened later, actually; after I had that seizure I couldn't drive for a year. So I was walking home from Fred Meyer with a bag of groceries when all of a sudden I got That Feeling. I stopped. A quarter mile from home. Nobody to call. Was I going to go full-on generalized seizure on the sidewalk there? Hit my head against the concrete. Roll down the slope into the chain link fence? Or maybe out into the road, into traffic. DAMN was I scared. I knew if I was going to generalize I probably had five minutes to get home; of course, home was probably 8 minutes away. I did my best, pushing myself along as fast as I thought I could trust my legs to go.

Finally I got home and popped a double dose of my Depakote. I had another partial seizure a minute or two later, not as bad. And that was it; the medication helped my brain stay in control over its rogue neurons.

Sometimes I feel my life revolves around pills

Both of these were really scary. With the first, I was scared of having people around, because they might misunderstand. They might look down on me. They could, I don't know, think I was as broken and malformed as I thought I was. But then again. A seizure, even the partial one, with no one around removed any possibility that anybody might be able to understand, or help, or sympathize. I didn't know which was worse.

I don't see myself, anymore, as broken and malformed. I don't feel so embarrassed and upset at the possibility of having a seizure in public. I want people to know, to be able to care; because when it comes down to it, I need people.

None of us, and certainly none of us with epilepsy, can get through this life alone. But with understanding, we can support each other. We all have a part to play in owning epilepsy.

Seizures: Being Alone

Six years after being diagnosed with epilepsy I finally moved out on my own. I was on my second medication by then—Depakote. It did well for me (except for the required quarterly liver function tests, part of the territory). I was really really excited about being permanently an adult: a bit nervous, especially at being two thousand miles away from family, but really happy at the same time.

And then one day.

You know, I don't really remember what I was doing that day. I do remember I was walking through the living room, and all of a sudden I fell over. My glasses fell off, but I couldn't tell where they were. My neck was curled up against my shoulder—I knew I was biting my tongue but I couldn't feel it. My arm was jerking behind my back in some kind of spastic disco move. My legs were probably twitching and kicking; I don't remember. I do remember praying that I'd lose consciousness. Then it went dark.

I don't know how long I was awake before realizing I was. My first thought was "Is it today?" A bit incoherent, but I knew I didn't even realize what day it was or how long I'd been lying there. After maybe ten minutes I gathered enough strength to turn my head to find my glasses. They were right there beside me, but I couldn't move my arm to reach them. That took another five minutes or so. Eventually I managed to get up, stagger to bed, and fall asleep.

Being alone can be a great experience, liberating and fun, when you're healthy. When you're chronically ill? Not so much. Fortunately it's easier to find support now (online, for example) than it was twenty-plus years ago; still, having a seizure alone is one of the most harrowing experiences I've ever had.

If you know someone has epilepsy, say hi. Ask how they're doing; be friends. It means a lot to us, it really does. And if you have epilepsy yourself? Don't be afraid to talk about it. Don't let it control you. People are good; life is good. Let it be good to you.

Facing Epilepsy: In the Beginning

A Saturday, I think, at the end of March 1988. I was a junior in college, at a movie with my girlfriend when we noticed my left arm twitching every few seconds. I was concerned, but when it stopped after a few minutes I just made a note to go to the Student Health Center the next day. We went home, and I fell asleep.

The next thing I remember was my girlfriend putting my coat on. Tying my shoes. Crying. Leading me to a waiting university security squad car. After a few minutes, we were here:

University of Chicago Medical Center

For those of you without epilepsy, I'm not sure you can imagine what it's like to have your body start doing things without your realizing, or wanting it to. To feel like you might be about to totally lose control, at any moment and without warning. And losing consciousness? I'm never quite sure, when things go dark, that they'll come back again. Scary stuff.

Probably the worst thing for me, at the beginning, was not knowing why. They did a CT, and an MRI (which was new back then; they were still "NMRs"). They did a spinal tap. But no definite results, at least not that they told me. I'm sure that was frustrating to my parents. Me? I was just terrified, at least when I wasn't feeling woozy from whatever anti-seizure drugs I was on.

I got better, as they say. No, the seizures haven't stopped. But they've stopped scaring me as much. (I guess practice makes perfect? I've had a fair number by now.) And I know more than I did back then. If knowledge is power, welcome to the epilepsy power zone.

Welcome to me, facing epilepsy.

I want this blog to be a resource for everyone: a source of strength and friendship for those with epilepsy, of support for family and caregivers, of knowledge for everyone. Through my experiences i hope we can see that no one is alone in their struggle with epilepsy, and that everyone has the power to help