After the Diagnosis:
Living with Multiple Sclerosis

(with deference to Joan Didion)

By Michele Patenaude

Two years ago, I was diagnosed with multiple sclerosis. My first reaction was relief. It was a beautiful, sunny October day in Vermont. I arrived in the parking lot of the neurologist's office, expecting little. This was just another in a long series of medical appointments I had shown up for over the previous four years.

None of my doctors had been able to explain my puzzling symptoms. The fingers in my right hand were tingly and numb. So was the bottom of my left foot. I had repeated bladder infections, bright flashes in my eyes, thumping noises in my ears, dizziness, sudden and incapacitating fatigue, foot pain, leg cramps, unrelenting constipation, depression. I was 52.

They'd tested me for many things, minor and major: Lyme disease, a spinal cord tumor, thyroid imbalance, carpel tunnel syndrome, herniated disc, prolapsed bladder, Achilles tendenitis.

When I started bumping into things and falling down, my physician recommended I see a physical therapist. The physical therapist taught me a regimen of balance exercises but also suggested I might want to see a neurologist.

The neurologist - an intense little blond man in a white coat who would eventually become "my" neurologist - ordered a magnetic resonance image, or MRI, of my brain. He used his pencil to point out the gauzy white patches on the images displayed on his computer screen. Images of my brain, slice upon slice, from bottom to top, revealed many scars.

"What does it mean?" I asked him. "You have multiple sclerosis," he said matter-of-factly. Additional tests of my spinal fluid and optic nerves later confirmed his diagnosis.

I knew nothing about MS. I only knew that it was a very serious disease. What would happen to me? Would I end up in a wheelchair? Would I die of it? After I left his office that sunny afternoon, I sat in my car, lay my head on the steering wheel, and cried. I was afraid.

But I also felt relieved - and vindicated. The diagnosis meant I wasn't crazy, or a hypochondriac. There really was something wrong with me.

Before and After

For me, as for most people with MS, the diagnosis is a dividing line between life before and after.

Before I was diagnosed with MS, I walked four or five miles at a stretch, two or three times a week. Now I can only walk one or two miles - on a good day, using two trekking poles to keep my balance. On a bad day, I can only walk one or two blocks. Sometimes I meander and stagger as if I am drunk.

Before my diagnosis, I ran up flights of stairs. Now I look for elevators. When none is available, I plod up the stairs with care and effort, and I always use the railing. Fear of falling is a constant companion.

Before, I hiked the Long Trail on weekends. My dream was to walk the whole length in stages. That dream is gone.

Multiple sclerosis is an incurable, progressive disease. "Multiple" because it affects more than one area in the brain or spinal cord. "Sclerosis" because it scars the central nervous system - the brain, spinal cord, and optic nerve. It is an autoimmune disease. My body's immune system is attacking the insulation (myelin) of my central nervous system. My doctor explained that the nervous system is like the wiring in a house, and the myelin is like the insulation on the wires. Put simply, I am shorting out.

MS symptoms are variable and unpredictable. Sometimes they are mild, sometimes they are severe. The disease takes several forms: primary progressive, secondary progressive, and relapsing-remitting are three of the more common types. The progressive forms are marked by a steady accumulation of disability. Progression may be slow or fast.

Relapsing-Remitting

I have relapsing-remitting MS - its most common form, affecting more than 85 percent of those diagnosed. It is characterized by attacks, or relapses, in which new or old symptoms flare up and, after a time, fade away or remit. In some people the attacks are few and far between, and the remissions complete or nearly so. In others, the attacks may be more frequent and the remissions only partial.

Most people with relapsing-remitting MS will eventually develop the secondary progressive form, in which disability steadily progresses with no more remissions. But it may take 25 years or more after the original diagnosis for relapsing-remitting to develop into secondary progressive.

I try not to think about that. The experts tell us that new disease-modifying drugs will stave off this progression, perhaps completely.

No one is sure what causes MS. The experts think there are at least three factors that must come together: a genetic predisposition, a viral infection that triggers the immune system to mistakenly attack the myelin, and some type of environmental factor or factors. Vitamin D, or the lack of it, has also been implicated.

Most people are diagnosed between the ages of 20 and 40, in the prime of their lives. Women are affected twice as often as men. People raised in northern latitudes have a higher incidence. In fact, the farther away from the equator you live, the more susceptible you are.

MS is a relatively rare disease. In the U.S., 400,000 people have MS. But in Vermont, more than 1600 people have it. In fact, Vermont has one of the highest per-capita rates of MS in the country, nearly twice the national average, according to the Vermont chapter of the National Multiple Sclerosis Society.

But You Look So Good

To most people, I look normal. I can walk without assistance, and I hold a full-time job. No cane or wheelchair announces my disability. Nevertheless, my symptoms affect my life in a hundred small ways. They are many and varied and unpredictable and annoying. Sometimes they are incapacitating.

Because so many of us look "fine," friends, family, and colleagues may find it difficult to realize that we are coping with a serious disability. One brochure issued by the National MS Society is appropriately titled "But You Look So Good." Our symptoms are not apparent: muscle weakness, debilitating fatigue, bowel and bladder issues, cognitive and memory problems, blurred vision, numbness and tingling, dizziness, heat sensitivity, pain. For this reason, MS is often called an invisible disability.

So far, my disabilities are mild: I am a 2.5 on the EDSS scale. The Expanded Disability Status Scale is the standard for measuring disability. Zero on the scale means "no disability"; 10 means "death."

In the nearly two years since I have been diagnosed, I have learned how to live with MS. I have learned how to adapt and adjust. I tell myself it could be worse and I know this is true. I know many people for whom it is worse. But I live a very good, full life.

I am no longer afraid of getting up in the morning and not being able to walk. Nevertheless, temporary or permanent paralysis, although uncommon, is always a possibility. Most of us with MS know someone this has happened to.

I am no longer afraid of going blind, although people with MS often go blind in one or both eyes. This is called optic neuritis and it is often the first MS symptom a person will have. Most of the time it is only temporary. Most of the time.

I am no longer afraid of dying of MS. Most people with MS have a normal or "nearly normal" lifespan, according to the literature and Web sites. However, people with MS sometimes die of it, or of complications from it.

The drug treatments, pioneered 10 years ago, should keep me out of a wheelchair for a long, long time. So I am told. That's why I keep taking the drugs even though the side effects can be excruciating.

Shooting up for $26K a Year

It's Friday evening, and I collect my drug paraphernalia - an alcohol swab, a cotton ball, a syringe pre-filled with 44 micrograms of interferon-beta. I swab my thigh and jab the needle into it and press down on the plunger. It stings. I perform this ritual three times a week: Monday, Wednesday, and Friday. I cynically refer to it as "shooting up."

Tomorrow I will have a wine-colored blotch at the spot that could last for a week or two. Tonight, body aches and sweats will wake me up. I get up and take two ibuprofen. I should have done that before I took my injection. "Pre-medicating," it's called, and it is strongly recommended by the interferon makers to deal with the flu-like symptoms that are a common side-effect of the drug.

About 10 years ago, the first disease-modifying drugs for MS were approved by the FDA. They have revolutionized the treatment of relapsing-remitting MS. The one I take is called Rebiff and it costs $26,000 a year. The drug's distributor metes it out to me by the month in boxes of 12 syringes delivered by UPS. Deliveries are preceded by phone calls from a drug company representative. One of the questions they always ask me is if there have been any changes to my health-care insurance.

All of my medical care providers want to see my medical insurance card before they treat me. My insurance card is my passport to medical care. If I did not have it, I am not sure what would become of me.

The interferon hinders my immune system T-cells from crossing the blood-brain barrier and attacking the myelin in my central nervous system. It will not make me better; it will only slow down the rate at which I get worse. It seems to be working. Last year's MRI showed no new lesions in my brain.

My Tribe

It is 6 a.m. on the first Wednesday of the month and I am walking into my MS support group. I am limping. Julie uses a cane. Bob uses a cane, too. Shirley uses a walker. I came to the support group when I was "newly diagnosed" because I needed to talk to other people with MS. I needed information and coping strategies. I needed to share my fears.

I also attend IDEAL (Individually Designed Exercises for Active Lifestyles) sessions twice a week. The program was pioneered by Dr. Susan Kasser, a professor in the Rehabilitation and Movement Science Program at the University of Vermont (UVM). Sessions are held in an exercise gym at UVM. Most of us who attend have MS; some have other neuromuscular and physical disabilities. We arrive in wheelchairs and scooters and on crutches and canes.

I am one of the few who walks in on my own. In the gym, we ride recumbent bikes, walk on treadmills, lift weights, bounce on big inflated exercise balls, and lift and swing smaller medicine balls. We perform floor exercises on the mats and use resistance bands. We talk and exchange notes on medicines and doctors and symptoms and how to manage them. We laugh and trade stories and advice. Sally brings chocolates.

The disease has no cure, but the IDEAL program helps me maintain my balance and keep my muscles strong. Like the support group, the people who attend provide me with inspiration, information, and support. I tell them they are members of my "tribe," the MS tribe. We are working to defend ourselves against the ravages the disease inflicts on our bodies.

The Silver Linings

Being diagnosed with MS has not been all bad. I would rather not have it, but it's changed my life in some good ways. It has made me re-examine my priorities. I've learned how to say no, to ask for help. I no longer live to work. I spend more time with family and friends and looking out the window. I am not a perfectionist any more; I have become a fan of "good enough."

MS has made me listen closely to my body. I take better care of it. I pace myself in all I do. I take naps. I go to bed early. I rest when my body tells me to. I eat better, exercise, practice yoga. I have bad days and good days and in-between days. I am grateful for the good days, and I no longer take them for granted. I have learned to appreciate my own mortality, and the increasing limitations that accompany aging.

I do not know what the future will bring, but who does? I have learned to take life one day at a time.

For more information visit the National Multiple Sclerosis Society Web site: www.nationalmssociety.org.

Michele Patenaude is a teacher and writer in Burlington. She was editor of Vermont Woman 1988-90.

Laughter is Still Some of the Best Medicine

Having been diagnosed with M.S. doesn't seem to have had a negative effect on Michele Patenaude's sense of humor. In fact, she's been working on honing it over the last year through participation in the "Laugh Attack Standup Comedy Workshops" led by Vermont "Comedy Diva" Josie Leavitt. Patenaude took Leavitt's 10-class workshop last fall, and integrated jokes about her experience with M.S. into her final project, a seven-minute stand-up routine presented to the class (and open to the public). In February, Patenaude was one of two graduates of the class who Leavitt invited to perform in her ongoing comedy series, "Stand Up, Sit Down, and Laugh" at Burlington's FlynnSpace. Patenaude is participating in the current round of workshops by Leavitt that will culminate in a July 22 public performance. For more information, www.flynncenter.org.

Patenaude kindly shared excerpts from her routine with Vermont Woman.

Last year, I was diagnosed with multiple sclerosis.
I was freaked out.
"How long do I have to live, Doc?" I asked.
"Oh, four, maybe five … decades," he said.
He went on, "Your nerves are like wiring in your house. And the insulation on your wiring is getting a little frayed. Basically, you're shorting out. But you'll live."
So, it's been a year of sparks, brown out and flickers, but the lights are still on.

Having MS is really not all that bad. In fact, the other day I wrote down a list, "Some of the Good Things About Having MS:"
Your friends no longer ask you to help them move.
When you come staggering back to work after a three-martini lunch, you can always say "Gee, my MS is kicking up today."
No more Downward Facing Dog at yoga.
Your friends stop bugging you to climb Camel's Hump.
The Number One good thing about having MS… Knowing your health care insurance company is losing money on you.

When I announced to my family and friends that I had MS, the most common response I got was -- "I'll pray for you."
So, what do I do with that? I'm an atheist. A Catholic atheist; but an atheist, nonetheless.
I've got MS … and they try to comfort me by praying to an all-powerful, non-existent, imaginary being - who they ask to cure me.
I felt like a bald man who'd been given a comb.

I got this new job recently-- and I work in a cubicle -
(Which, to me, is just more evidence that there is no God) -
and one day I'm clicking away at my computer and I sneeze. "Achoo!"
This woman, Mary, who works on the other side of the cardboard wall says, "God Bless you."
Well, I'd feel like a hypocrite if I said, "Thank you."
So what do I say?
"Please don't bless me. I'm an atheist."
So over the cubicle wall, Mary says back, "Well, the hell with you!"
Well, I can't let that pass, either. I assume she wants to keep up this discussion, so I say:
"Not only don't I believe in God, but I also don't believe in life after death -- heaven or hell."
So then she yells over, "F#*K YOU!"
(I pause and ponder)
"Well. Okay…, I suppose I can live with that."

So I'm not waiting for God to cure me.
That's why I am so glad for organizations like the Multiple Sclerosis Society for all that great fundraising they do to find a cure for MS.
So, I called them and said, "How can I help you raise money to find the cure?"
And the perky woman on the other end of the phone says, "You can participate in the MS --- WALK A THON!"
Walkathon? Walkathon? Who thought that up?!
Most of us with MS don't walk all that well -- if we walk at all.
We shuffle, we hobble, we stumble, we crutch, we cane, we wheel, we stagger, we meander, we totter, we teeter, we limp.
But WE DON'T WALK!
A walkathon to cure MS. Hmmph.
My co-worker Bill says, "Don't be so negative, Michele. I'll pledge you. How about I pledge $100 a mile on you?" -- he says as he's snickering to himself and elbowing the guy next to him. Okay, So I figure now I gotta do this walkathon, if only to show Bill.
So I am walking in this walkathon, and this pick-up truck careens around the corner and hits me and drags me for a whole two miles and drops me down right over the two-mile finish line.
Can you believe that? That really happened.
You should have seen the look on Bill's face.
Unfortunately, I was killed. Yeah, dead.
That really happened. Really.
So after I die, I wake up to find myself in front of the Pearly Gates with St. Peter smiling down at me, and I'm thinking, "Uh-oh, did I get this all wrong."
And St. Peter is smiling at me -- and behind him through the gates, I can see my Grandmother.
"Grandma, over here!" and I'm waving at her. And she's motioning at me to come in but wipe my feet first.
and there's Fluffy, my cat - the one who died when I was seven.
"Hey Fluffy, how are you?" I wave and smile. "I got hit by a car, too."
So I say to St. Peter, "So even though I didn't believe in any of this before I died, I get to go in, right? Cuz God is all loving and all forgiving and all that."
And St. Peter says, "Well, it doesn't work that way, Michele. If you want to get into heaven, you gotta believe - Before you die.
"Well, well, then what are you doing hauling me up here and talking to me if you aren't going to let me in?"
"Well, Michele," he says, "we got so many prayers for you that we felt we had give you a courtesy interview."