"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

Looking For A Neurologist: What We Need From Our Doctors

"Hi! Glad to meet you! I'm Doctor Smith."

I was in the office of my latest neurologist. I've done a fair bit of moving in the last thirty years, and the very first thing I have to do when I move anywhere is set up my doctors. I have to have my medications, and so I need a local prescriber. Neurologists aren't common in all areas of the country (I haven't always lived near a big city), and it usually takes a while before you can get an appointment. Finding a neuro has usually been the second thing I do when I move anywhere, right after finding an apartment.

So there I was in Doctor Smith's office in northern Michigan. He certainly seemed interested, attentive, competent; everything I wanted my specialist to be. But I had seen three or four neurologists in the previous six years. I was used to them being good at what they did. At that moment, I just wanted to get my prescriptions and get out feeling reassured that somebody knew who I was, what was going on with me, and what should be done if there were a problem. There wasn't anyone else who fit that description for six hundred odd miles.

Home was here.

Family was way down here.

A brief introduction, then "I have epilepsy. It was diagnosed six years ago at the University of Chicago. I've been having a few seizures a year, on average."

"Oh? Well, let's see." So, he's going to see whether I have epilepsy? This should be interesting. The standard approach to deciding whether someone has epilepsy, short of documenting multiple seizures, is detecting "epileptiform activity" on an EEG.

This stuff.

But most individual-practice neurologists don't have an EEG in their office; they outsource it to a lab. Doctor Smith started in on what I'd come to think of as "the usual routine".

"Stand up. Close your eyes. Put your arms out in front of you. Touch your nose with your left hand. Now your right hand." And on. And On. And ON. Finally after an hour (an HOUR!!!):

"Well, I think we can say that you have epilepsy."

Oh really, Doctor? It took sixty minutes of testing, using a test that can't actually tell whether there's seizure activity in my brain, for you to agree with something that I already told you an hour ago?

Look, neurologists are good people. They're really important to us. I mean Really Important. Some of them are even epileptologists, specialists in epilepsy. (If you come across one of these guys, don't give them up. They're ACE.) But calling all neuros: I'm an adult. I know what's going on with my body. Can we at least start with the assumption that I know I have epilepsy? Don't look down on me. Work with me. I can help you help me. That'll do both of us good.

And that goes for all you guys too. I love you!