"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?

National Epilepsy Awareness Month

November is National Epilepsy Awareness Month in the United States. The Epilepsy Foundation of America is encouraging people to take part in awareness and fundraising events. I've convinced my workplace to do a fundraiser, and I'm going to be tweeting and Facebooking facts about epilepsy throughout the month.

Epilepsy is one of the most widespread of the "invisible illnesses"; it affects nearly 3 million people in the US, and 50 million or more worldwide. Yet research on epilepsy is drastically and chronically underfunded. Please, if you are in the US and you get a chance, consider getting involved in one of the events sponsored by the local branch of the Epilepsy Foundation. We need you and we'll be glad to have you!

Pachygyria, Heterotopia, And Other Weirdness

Do you guys know what the brain looks like?

Not this one. Although I do ask, "Gee, Brain, what do you want to do tonight?"

 It looks like a big wrinkled blob of meat:

 

Yeah, kinda gross.

Still, everything has its place and function, and the brain is really really cool when it works right. Which, of course, means that when it doesn't, things can go really wrong. Including having seizures.

If you look at the sliced-up part of the brain there, you'll see that the brain has two kinds of tissue: the inside is called the white matter and the part around the edges is called gray matter (even though it looks pink to me; maybe someone was colorblind?) The bumpy parts on the outside are called gyri and the cracks in between are called sulci. Oh, and the two halves of the brain you can see? They're connected in a few places, the most important being the corpus callosum, near the bottom of the brain right in the middle.

I couldn't find an actual picture, but this is what it looks like on an MRI.

Bear with me guys; I know you probably weren't expecting an anatomy lesson but I promise this is relevant.

The brain gets sorted into gray matter outside and white matter inside during about the fourth month of pregnancy, and the gyri and sulci develop from about the fourth to sixth month. The corpus callosum starts developing about the fifth or sixth month and continues at least through birth.

Unless of course you're me. Then things go every which way.

For nearly twenty-five years, nobody could understand why I was having seizures. Then my neurologist finally (FINALLY) said, "Let's have a high resolution MRI and see if we can figure it out."

They stuff you in this for 45 minutes. It makes a ton of noise
and magically sees inside your skull.

When the report came back, I read it before the doctor did (I worked in the radiology clinic, so I could do that :-) ) There were all kinds of words I didn't know: pachygyria, dysgenesis, heterotopia. I was a bit scared.

Basically here's what happened: Before I was born, when my brain was developing, that gray matter didn't make it all the way out to the outside of my brain where it belongs. I have big lumps of gray matter on the inside - gray matter heterotopia. Because all that gray matter is on the inside, the stuff on the outside is thinner than it's supposed to be, and my gyri are spread out wider than they should be and the sulci are shallower - that's pachygyria. Finally, it looks like my corpus callosum did not develop correctly. Go back up and look at the picture. See the bulb at the back and the hook at the front? Not there on mine.

Now most people with these conditions, as severe as mine are, have seizures early in life: as early as age 3, and almost certainly by 9 years old. My seizures didn't start until I was 20. I'm lucky there. And very lucky indeed that I didn't experience the intellectual deficits and learning disabilities people with these conditions nearly always do. My neurologist, when he saw the report from the MRI, said, "Go home and thank your parents for your good genes!" The neuroradiologist looked at the pictures, then looked at me, and said "Are you sure this is you?"

So there are a lot of worse things that could have happened to me, and I am thankful every day that they didn't. I did thank my parents for what they had passed down to me, and I have a lot more respect than I did for my brain, which somehow finds a way to function well above normal when by all rights it shouldn't even be able to get to "normal". I feel better about myself, and about my epilepsy, than I did before I knew what was going on.

About 2 out of 3 epilepsy patients, though, don't know why they have epilepsy, and never will. For you guys, I look with awe at your bravery. I really do. And so should everyone. Something terrible has happened to you, for no apparent reason, with no apparent cure, and yet you find a way to slog along through life; even to be happy and smile. You're amazing, you know? Don't forget that.

And you guys without epilepsy? You're great too. But pay attention to those around you. They may be going through more than you know.

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I want to call out my friend Daisy Robson, a fellow epilepsy blogger. She's recently been in the ICU and is still recovering from having a hideous lot of seizures. She and her mom, in particular, have really gone through hell in the last week. If you could just keep them in mind; pray for them if you pray. They could use it. Thanks!

What Happens When Medication Doesn't Work?

So I told you about one of the first seizures I had alone. But I didn't give you the whole story.

About a year after I was first diagnosed with epilepsy, I switched medications and began taking Depakote, a drug with quite a few potential side effects—as always—but quite good seizure control. I was happy; my doctors were happy; life was good. Good enough that I was comfortable moving 2000 miles away to a new job.

After my job interview, work went quite well: I virtually forgot, and so did everyone else, that I had seizures or anything at all. I took my pill in the morning, and then I took my pill again at night, and I just went on with my life. That's how it's supposed to be, right?

And so life went on; I got through (as I remember) most of my first year just fine. Parent-teacher conferences went fine; my trip back home over Christmas went fine; and I was looking forward to finishing the school year.


Life went on nicely, then, until I had that nasty seizure I told you about. I immediately (well, as soon as I could think again) made an appointment with my neurologist. After all, if you're taking a drug, it's because it works, and you expect it to keep working.

A good medication is one that works, after all.

I didn't know why it wasn't, and it scared me. Was I going to have another seizure again? When? Where?  At work? Walking home from the grocery store? Falling down stairs?

Well, the doctor explained to me, in some cases the drug doesn't keep working the way it began. If your body develops tolerance, and gets used to the medication, the drug can just stop having any effect.

Drug tolerance just means that your body gets more used to a drug. With Depakote, one of the ways this can happen is that your brain can start getting overwhelmed with how much it's receiving, and actively push the drug away from where it most needs to be. This doesn't appear to happen very often, and if the drug is initially successful, it almost always continues to be.


But not in my case. My body was reacting just as if I hadn't taken anything in days. The neuro increased my dosage from 1200 mg a day to 1800, and I was fine—for another month, at least. Then another seizure, and another medication bump: to 2400 mg. This time the neuro looked concerned. I was already concerned.

One of the cautions with Depakote is that it can be toxic to your liver. At 2400 mg a day, my doctor explained, I was pushing up to a point where it wouldn't be safe for me to take much more.  "I think we need to try something else," he said.

Well, OK. But what are the guarantees that something else would work? Would I have to change again? Would I develop tolerance out of nowhere again and have unexpected seizures? All sorts of questions popped up. But anything was better than seizures at that point; what other option did I have?

So I moved on to Tegretol, which worked quite well for me for a long time, and that was that. I've never developed tolerance to anything else; but I've always been on the lookout.

I guess that's the lesson. I'm very aware of what I'm taking, and I've never again been complacent and willing to trust that a medication will "just work". At the same time, I'm happy that there are a lot of options, and I realize that what happened to me was very rare and probably just a fluke. If you take medication for any condition, check it. Know your side effects; know your alternatives. And if anything weird or unexpected happens, tell your doctors. They should be able and willing to help you to something better.

Knowing your meds is part of owning your epilepsy. You can do this!

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.

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.

Printable - What To Do For Tonic-Clonic Seizures

This is just a really quick, rough guide for what to do if you're around someone who has a tonic-clonic seizure. Print it out; share it around; put it up wherever you can. There are lots of others like this floating around the web; this gives enough to keep you and someone else safe and confident.

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