"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?

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!

Facing Epilepsy: Parents, Doctors, and Caregivers

You might not all know this, but for the past several years I've been working in the healthcare field, in the IT specialty known as medical informatics. About a year and a half ago, I discovered The Health Care Blog, an interesting source of diverse views on health care, health care reform, and the part that IT plays in both.

Fear not though! This will not be a post about health care, or IT. I wanted to share with you one of the first posts I read on the blog: a short story by emergency physician and author Philip Allen Green, titled "Status Epilepticus".

The story made a really deep impression on me when I first read it last year, and I've gone back to it many times since. It really tells the story, I think, of what parents can go through when they have a child with epilepsy, and what a doctor might go through when they're unable to cure, or perhaps even to help, someone with a seizure.

Please read the story. I hope it will give you the same sort of insight it gave me.

To all of my doctors, and to my parents especially: I can't thank you enough for how much you've wanted and tried to help me. I love you all, I really do.