My name is Laverne Calvert. I am 55 years old, I taught typing, shorthand and bookkeeping to the teenagers of Charleston County for twenty-six years, and I have had multiple sclerosis since 1979. I have had Charleston summers since 1966, which is longer, and some years I'm not sure which one is worse.

I'm putting this page up because when I was first told, there was nobody to ask. The doctor gave me a pamphlet with a sad lady in a wheelchair on the front and sent me home. I'd like the next woman to get something better than that. So here is what MS is, as plain as I can make it, what's happened to me, what's helped, and every trick I know for staying cool in a town where the air feels like a wet bath towel from May till October.

One thing first. I am a retired business teacher, not a doctor. I've read everything I could get my hands on and I've had twenty years of good and bad neurologists, but what I know is what happened to me. Talk to your own doctor before you change anything.

Your brain and your spinal cord send messages down your nerves all day long. Those nerves are wrapped in a coating called myelin, the way the wire in a lamp cord is wrapped in plastic. In multiple sclerosis, the body's own immune system, which is supposed to be fighting off germs, turns around and attacks that coating in the brain and spinal cord. Where it's damaged, scar tissue forms. That's the "sclerosis" part, and "multiple" because it happens in more than one place. The messages slow down, get scrambled, or don't get through at all.

Nobody knows yet exactly why it happens. Here's what they do know:

• The symptoms are different for everybody, because it depends on where the damage is. Blurred or double vision, numbness or tingling, weak legs, bad balance, stiffness, trouble thinking straight on a tired day, and fatigue. The fatigue is the big one, and it is not the same as being sleepy. It's like somebody pulled the plug.
• Most people find out between twenty and fifty, and women get it about twice as often as men.
• It isn't catching. You can hug me. Please do.
• It goes different ways. Most people start out relapsing-remitting: you have an attack (doctors say a relapse or an exacerbation), then you get better, partway or all the way, and you may go months or years before the next one. For some people it later turns secondary progressive, getting slowly worse with fewer clear attacks. A smaller number have primary progressive MS, which goes slowly downhill from the start without the ups and downs. Your neurologist can tell you which one he thinks you have, but he may not know for a while.
• Most people with MS never need a wheelchair. I want you to read that twice, because nobody told me. Some of us use a cane, and some of us use a scooter for long distances, like me. Most of us keep on walking.
• Heat can make symptoms worse for a while. A hot day, a hot bath, a fever, even a hard workout can bring back old symptoms or make the current ones louder. When you cool down, it goes back to where it was. The heat doesn't do new damage. It just turns up the static on the line. That's why this page is blue.

I came to Charleston in 1966, twenty-two years old, with a business degree, one suitcase and a job teaching typing. Married Wilson Calvert in 1968. He worked at the Navy Yard, I worked at the high school, we had two boys, and that was life.

1979. I woke up one morning in March and my right eye was like looking through wax paper. It hurt when I moved it. The eye doctor called it optic neuritis, gave me some steroids, and in about six weeks it cleared up. Nobody said the words "multiple sclerosis." I don't know if they thought it and didn't say it, or didn't think it at all.

1980 to 1985. Little things. My feet would go numb, like they'd been asleep, and then they'd wake up a few weeks later. I'd get so tired by fifth period I'd teach sitting on the corner of the desk. I dropped a coffee cup or two. Every summer was worse than every winter, and I figured that was just Charleston. One doctor told me it was nerves. Another one told me it was the change coming early. I was forty.

1986. My legs got so heavy I couldn't do the stairs at school. My family doctor, bless him, sent me to a neurologist, and the neurologist sent me for an MRI, which was still a new thing then. I lay in that tube for an hour and a half listening to it knock. The pictures showed the spots, and there it was. Seven years after my eye. I went home and sat on the back steps and cried, and then I got up and made supper, because the boys still had to eat.

1986 to 1996. Relapsing-remitting, just like the book says. A bad spell every year or so, then better. Some of the bad spells I got a few days of steroids by IV to cut them short. In 1993 I took early retirement. I could still teach, but I couldn't teach and do anything else, and I wanted some of me left over for my family. Wilson retired from the Navy Yard the same year, three years before they shut it down.

1996 to now. I started on Avonex that fall (more about it below). I've had two relapses in three years, and neither one was bad. Before, I was having one or two a year. I walk with a cane, a nice black one with a silver top that my younger boy picked out because he said if Mama's going to have a cane it ought to have some style. For distances, the State Fair, the Market downtown, the airport, I ride a scooter. It's red. People get out of my way.

The weekly shot. For most of my life there was nothing they could give you to change the course of MS itself. Then in 1993 came Betaseron, and in 1996 came two more, Avonex and Copaxone. They are not cures. They are meant to cut down how often relapsing MS flares up and maybe slow it down. Betaseron and Copaxone are shots just under the skin, every other day for Betaseron and every day for Copaxone. Avonex is one shot into the muscle, once a week.

I've been on Avonex since 1996. I give it to myself every Friday night in my thigh. The first few months I felt like I had the flu the next day, achy and chilled, but my neurologist had me take Tylenol before and after, and now it's mostly a sore leg and a lazy Saturday. I do it Friday so I can be puny on the weekend in peace. Is it the shot that slowed me down, or would I have slowed down anyway? I can't prove it. But I know what my calendar looked like before, and I know what it looks like now.

Which one is right for you, or whether any of them is, is between you and your neurologist. They're expensive, so call your insurance early, and ask your neurologist's office who can help with the paperwork. Somebody there has done it a hundred times.

Pacing. I get so much in a day, and that's all I get. I do the hard thing first, in the morning. I sit down to cook. I quit ironing in 1994 and the world did not end. If I'm going to a wedding on Saturday, I don't go to the grocery store on Friday.

A good neurologist. Dr. Adorno is my third, and she's the one I'll keep. She looks at me when I talk, she calls me back, and when I asked about the Avonex she sat down and drew the immune system on the back of my paper gown. If yours makes you feel like a nuisance, find another one. You'll be seeing this person for a long time.

The National Multiple Sclerosis Society. Our local chapter sent me a big envelope of real information the week I called, the kind I wish I'd had in 1979. They can point you to a support group and to programs for the newly diagnosed, and what they send you about research is straight talk, not hype. Look them up in your phone book under National Multiple Sclerosis Society.

Wilson. Thirty-one years. He does the yard, he carries the groceries, he fills the cooler for my vest every morning without being asked, and he has never once told me I don't look sick. (People who say that mean well. I say, "Thank you. I've worked at it.")

My Thursday group. See the bottom of the page.

Print these out, write your answers in the margins, and take somebody with you. You will not remember half of what's said, and that's not the MS talking. Nobody does.

1. How sure are you that it's MS? What else did you rule out, and how?
2. What do my MRI pictures show? Can you show me?
3. Which kind do you think I have, relapsing-remitting or progressive? How will we know?
4. Should I be on one of the three shots? Which one, and why that one for me?
5. What side effects should I expect, and what do I do about them?
6. How often will you want to see me, and how often will I need another MRI?
7. If I get a new symptom on a Saturday night, who do I call?
8. How do I tell a real relapse from a hot day or a bad week?
9. Is there a nurse in your office I can call with questions between visits?
10. Can you send me to a physical therapist or an occupational therapist?
11. Will you write me a prescription for a cooling vest, in case my insurance will pay for it?
12. How many people with MS do you see? (Ask this one nicely. But ask.)

Laverne's heat tricks

More than thirty Charleston summers, and twenty of them with MS. Here's what works for me. Your mileage may vary, as Wilson says about everything.

One important thing: if your symptoms get better when you cool off, it was most likely the heat. If they don't, or something brand new shows up and stays more than a day or so, call your neurologist. Don't sit on it thinking it's just the weather.

Second and fourth Thursdays, ten in the morning, in the fellowship hall of a church just off Highway 17. They keep the air conditioner on high for us and nobody complains. There are usually eight or ten of us. Coffee, a table of whatever somebody brought, and the best two hours of the month.

Some of the regulars said I could tell you about them:

• Theresa is thirty-five, a nurse, diagnosed two years ago, and the first day she came she sat by the door like she was ready to run. Now she runs the phone tree.
• Willie did thirty years in the Navy, mostly on ships, and says MS is the only thing that ever made him seasick on dry land. He brings boiled peanuts.
• Jean has primary progressive MS and uses a wheelchair, and she is the funniest person I know. She'll tell you herself she isn't brave, she's just busy.
• Mitchell is thirty and the baby of the group. He was diagnosed last spring and he came in with a notebook full of questions from the library. He's teaching the rest of us how to get on the Internet. That's how this page got here.

If you're in the Charleston area and you'd like to come, write me and I'll tell you where. If you're somewhere else, call the MS Society chapter for your state and ask what's near you. Go once. You can sit by the door.

And if you are one of the newly diagnosed, scared to death and reading this at two in the morning: I've been where you are. It is a long road, and it is not the road in that pamphlet. Most of us keep working, keep loving, keep walking, and keep complaining about the heat. You will too.