Personal Perspective:
The Silver Lining

The 4th of July 1980 - Independence Day, ironically enough. A group of white coated medicos had gathered around my hospital bed to deliver the results of two weeks of exhaustive tests.

"We're sorry," began the head physician in a slow, deliberate voice. "as far as we can conclude, you have multiple sclerosis."

Twenty years on, I don't remember the finer details of how those two words made me feel - only that they slapped me with a tremendous shock, that I wept inevitable tears and felt so grateful for the security of my husband's arms around me.

Just five weeks earlier, I'd visited my GP suspecting that treatment for a verruca had triggered the numbness and "pins and needles" sensation in my left foot.

"No connection," declared the doctor as he prodded the troubled foot. "You probably have a virus." "We'll have to watch it though," he muttered quietly as he finished the examination. "Sometimes MS starts this way."

Prophetic words. Over the next three weeks the numbness spread to the other foot, crept up my thighs and over my stomach. I began to stumble, bang into things and feel generally unwell, but told myself I was too busy to see the doctor again.

Crunch-time came when one of my colleagues at the center for visually impaired children where I worked as a teacher noticed me slurring my speech. "See a neurologist today," he insisted.

Panicking, I hurried back to my GP. He hastily made arrangements to have me admitted to hospital that same evening, while telling me that although a virus could still be the culprit, he feared I might have what he called "the big stuff" - meaning MS or a cerebral tumour.

Twenty years ago, tests for MS weren't as straightforward or definitive as they are today. Reaching a diagnosis meant enduring a two-week-long round of brain checks, eye tests, X-rays and blood tests. In fact, a seemingly endless series of pin pricks. I'd joke that if I drank a glass of water, chances were I might start leaking like a garden hose through the pin-prick holes.

Throughout it all, I was desperately tired, even though I obeyed doctor's orders not to budge from my bed. In those two weeks of nerve-wracking uncertainty, I think I lived on the love and laughter of my husband, family and friends.

In the days that followed the diagnosis, I felt the shock subside. In its place a determination to find out everything I could about MS emerged. I figured I could face the future with a degree of confidence if I armed myself with knowledge. At the same time, I found myself giving into an odd sense of euphoria which made me feel as if I was topped up with champagne. Later on, I found out that "high" was a transient characteristic of MS.

Today's Multiple Sclerosis Society has a wealth of resources, but back then it had few, besides one very supportive field officer and a couple of slim information booklets. So I joined a band of people with MS and together we ploughed through books on the subject at the local library.

We learned much. Firstly, that MS is an auto-immune disease of the central nervous system. Somehow the body's immune system starts to wage war on the fatty myelin sheaths which not only protect the ends of the nerves, but also help transmit messages to and from the brain. As the brain and spinal cord's myelin is destroyed, it is replaced with patches of scar tissue called sclerosis which impede the flow of messages around the body.

Knowing that MS was once called "creeping paralysis" scared me - would I end up dependent and bed-ridden? Yet no two cases of the disease are the same, I discovered. Some doctors now think MS is in fact several different diseases that result in the same damage: sclerosis. Even an individual's unique set of symptoms may lurch from relapse to remission and back to relapse again

Common symptoms of MS include partial or complete paralysis, numbness, blurred vision, poor co-ordination and dizzying mood swings.

MS affects more women than men, and usually strikes between the ages of 15 and 40.

Oddly enough, it mostly afflicts populations who live in the higher latitudes, between 40 and 60 degrees. I felt particularly peeved on both counts since, when diagnosed, I was 39 and lived in Wellington, which, at 41 degrees latitude, barely scrapes in. Yet I discovered that the incidence of MS is twice as high back on my home turf, Southland, than further North. No one knows for sure why.

Cross to the Northern Hemisphere and you find that MS thrives in northernmost regions, Scotland has the highest incidence in the world. Some people think there is a link between the higher rate of MS in Southland and its Scottish colonization last century.

Enter the realms of theories on MS. According to one notion, the disease originated in Scandinavia and was spread by the Vikings. Populations the Scandinavians invaded in the North and West of Europe now experience cases of MS - whereas those peoples they didn't infiltrate have largely remained free of the disease.

Others believe MS stems from a virus, picked up by genetically susceptible people before the age of 15, which lies dormant for years before manifesting itself after trauma or periods of prolonged stress.

Once I'd done my homework on the disease and settled into the gluten-free diet and vitamin supplement regime recommended by a naturopath, my post-diagnosis high suddenly dissolved into rock-bottom depression. I had returned to work after a brief two-week convalescence, but couldn't even manage a smile for months. In truth, my physical and mental energies took two years to recover from that first attack. Without my nearest and dearest's positive perspectives on life I couldn't have survived. I still remember my stoic mother saying, "I'm so sorry you have MS. But there it is. We must get on with life as best we can." And can hear my husband say how fortunate I was that I could continue my teaching career. "If you were a ballet dancer, it would have been a different story," he said. And I'm grateful to the friend who pointed out that the quality of her life improved after she developed arthritis.

Quality of life. That's what we're all seeking, no matter what our circumstances, isn't it?

I can truly say that my quality of life is better than it was before I contracted MS. No other trauma made me stop, re-evaluate my life and discard all the unnecessary rubbish. I live every moment to the fullest now. Since the fateful year of 1980 I've achieved more than I could ever have imagined, with or without MS.

Years of combining teaching with part-time study were rewarded with a BA and two Masters degrees, one in education, one in applied linguistics. I became principal of a school for physically disabled children, studied conductive education and tutored British post-graduate teachers studying to become conductors at the famous Peto Institute in Budapest. Earned a Braille's transcriber's certificate. When helped, put together and published the cookbook Nuffin but Muffins and the book of children's writing, Kiwi Kids Care. I now work as a correspondence school teacher.

In the past two decades, I've walked all the major wilderness tracks - the Milford, the Heaphy, the Queen Charlotte walkway - to name a few. Should there come a time when I've no further use for my hiking boots, I'll have the memories of those trips to sustain me.

(I have a leg that throws a "spastic" wobbly at times, but my everpatient husband keeps a long pole at the ready which he holds out for me to grip onto and steady myself when we're out tramping. He pulls me up the steep sections even though, at 78, he's 20 years older than I am.)

But I can't deny that living with MS is like walking a tightrope. A couple of years ago, I pushed myself too hard. My daily routine consisted of a 5.30 am start, an hour's exercise, followed by a full day's work, and late-night study. Two years into that regime, I began to experience severe MS symptoms in the form of tingling and numbness, which felt like a vibrator working through my body. I began falling over regularly and would suddenly find myself sprawled in an undignified fashion in all sorts of places: on pavements, down a bank in our garden and, once, under a car. Fortunately it was stationary at the time! On one occasion when my balance deserted me, I had to crawl alongside the wall of a university building, leaning against it for stability.

Whenever I felt myself fall, all sorts of thoughts flashed through my mind: would I be able to buy removable seat covers for a wheelchair, should I end up in one, to colour co-ordinate with my clothes? Would I get more money on a sickness benefit than on the dole?

The most my GP could prescribe to help was a short course of steroids, which relieved the numbness and tingling only temporarily. Frustrated, I felt certain there had to be something that would radically improve my situation.

Fortunately there was. I chanced upon Ayurvedic medicine, the ancient system of Indian naturopathy popularized in the West by Deepak Chopra. Believing I had nothing to lose by giving it a try, I visited an Ayurvedic practitioner. He prescribed a special, mostly vegan diet, along with herbs and a daily fresh jucie mixture of carrots, beetroot and celery, assuring me that, if I adhered to Ayurvedic principles, my severe symptoms would eventually almost disappear.

He was right. I visited him every two to three months over the next year and a half, during which time he modified my treatment programme. Within six to nine months I had stopped falling over and no longer experienced that vibrating sensation. I felt myself gaining strength and energy.

Today, my MS symptoms are minimal: minor numbness and tingling in the extremities if I overexert myself, urinary frequency and occasional spasms in my right leg. I can live with all these problems comfortably and I feel confident that if I abide by Ayurvedic principles, they won't worsen.

I'm not saying Ayurveda offers a cure, but it helped me. After 20 years of MS I feel as if "my cup runneth over." Besides my teaching job, I work as a volunteer tutoring refugees and new migrants in English. Next year, I hope to travel with my husband to his native Hungary to teach English.

With the help of a clever personal trainer who designs my thrice-weekly personal exercise regime, I've doubled my energy and stamina levels. A couple of days a week I take a 40 minute walk home through the restorative surrounds of the Botanical Gardens. It's so important to take care of the soul, too.

I consider myself most fortunate. I'm emotionally stronger as a result of living with MS. I now know that spring always follows winter - and that summer is on the way!

Other Personal Perspectives

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Personal Perspective: The Silver Lining

Personal Perspective:
The Silver Lining