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Seeing Asia with invisible MS.

Are you all right?" The noise on this Cathay Pacific flight from San Francisco to Hong Kong at first drowns out the flight attendant's question. We're flying with the entire U.S. soccer team, their beer bust is drowning out the movie. All she needs is me, this crazy passenger who's walking up and down the aisles, then bending in a runner's stretch.

Flying to Asia is boot camp for jet lag, 17 hours of light and sound. Sleep elusive no matter how much they dim the lights. By hour 6 you've fallen in love with the flight attendants; by hour 9 you hate them all, including the pilot and his cheerful updates: "We're over the Kamchatka Peninsula now ..." By hour 11 you adore them again, and you're begging for your 6th meal in a kind of demented Stockholm Syndrome. None of it is helped by the insomnia produced by Lariam, the newest anti-malarial medication, whose package insert includes the warning, "Don't drive a car if you're hallucinating."

The flight attendant asks again: "Miss, do you need something?" I look up and smile. "I'm fine, I just need to do this. I have multiple sclerosis, and if I don't work my leg muscles they forget what they're supposed to do."

"Oh, I'd never have known." Then her next question: "Are you sure traveling to Asia by yourself is a good idea?"

If I had a dollar for every time someone said, "I'd never have known," I'd likely have another plane ticket. I certainly would if I could get a buck for all the silent symptoms that never leave me, even when I'm not in a full-fledged exacerbation: the fatigue, the vertigo, the strained muscles when trying to climb stairs, the slow bladder slowed further by stress. I don't mean to complain, exactly. I'm extraordinarily lucky.

Sixteen years after diagnosis, I'm somewhere between relapsing-remitting and secondary-progressive. I certainly have times when I can't walk or write or hold a cup of coffee, and I've never been totally without symptoms, but I can run, and dance, and travel, with the help of exercise and assorted medications. I'm driven by a sense that I have to do everything now, in case the next flare-up leaves me permanently unable to walk. So when the opportunity came up to go to Asia to research a book I was writing, I took a deep breath and bought the tickets.

I haven't often thought about how much MS affected my journey, but there it is in my travel journals: "The air conditioning has my fingers numb." "If this bus doesn't stop I won't be able to write anymore." "Lying down to rest after an exhausting couple of days." Two phrases occur to me: motion sickness and missed opportunities.

My MS causes vertigo, so the most routine bus ride, even with meclizine, can be exhausting and deeply uncomfortable. Trains are easier for me, which meant that India was much easier than Vietnam, since India's train system puts Amtrak to shame. The reserved trains, air conditioned to excess, arrive with your name on a list taped to the door; overnight trains provide blankets to all!

Indians are some of the most generous and hospitable people in the world, and whenever I seemed the least unsteady, with my huge backpack, I had more help than I could use. I felt like the Blanche Dubois of India. At every turn, kind strangers fed me, guided me, and were more than tolerant when I said, "I need to lie down for a little while." Instead of air conditioning I learned to opt for "air cooling"--a fan over a pan of water that didn't turn the room too frigid for me.

Vietnam, without such trains, was another story. On my 3-day tour of the Mekong Delta, I rode in a van through My Tho, Long Xuyen, Can Tho, and back to Saigon. I kept my eyes on the scenery while trying to ignore dizziness and nausea. When we got off for a temple or a mountain view, I had to breathe and try to regain my equilibrium. The slow boats going down the Mekong's canals were much easier. The Mekong itself, by the way, is a mighty river that can easily hold a candle to the Ganges or the Nile. And the Delta sunsets spread watermelon color across the sky.

By the time I got to Phnom Penh, Cambodia, I was thoroughly exhausted and spent most of a day hiding under mosquito netting with a book. Taking the speedboat to Siem Reap, home of Cambodia's magnificent Angkor Wat, was out of the question. That's what I mean by missed opportunities.

Then there was the night on the town in Bangkok--it's 2 a.m., and I'm invited to go dancing, something I love. I have to say no. In India, a sweet older man invites me to tea with his wife, but I have to go rest. And in Vietnam, a last-minute opportunity to see the country's mangroves farther south--but no. Six more hours of buses may kill me.

So MS did cut down on my ability to be spontaneous. I needed to know I could rest soon and listen to my body's demands before they got out of control. I knew I had to take an hour to exercise and stretch every morning. I was hardly the most carefree traveler. For all that, my passport is itching as I write this story. MS is a vexing traveling companion, but it hasn't left me sitting on the tarmac yet.

I think it's helpful, when you're struggling with an illness like this, to go somewhere that challenges your whole self. Go to India, sit in a cycle-rickshaw, and watch the monkeys wander New Delhi's wide boulevards. Go to Saigon and practice the Zen art of crossing streets without traffic lights, trusting the mopeds and bicycles that dominate to veer around you. Go walk the beaches at Varanasi and see the women wash saris under the blazing Ganges sunlight. You won't forget that you have MS, but it won't feel relevant. And please say hello, world, for me!

Chris Lombardi, a novelist and freelance journalist, grew up in New York City, to which she has just returned after 10 years in San Francisco. Currently, she's a correspondent for Women's E-News <> and other publications.
COPYRIGHT 2001 National Multiple Sclerosis Society
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Title Annotation:multiple sclerosis
Author:Lombardi, Chris
Publication:Inside MS
Date:Jun 22, 2001
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