Multiple sclerosis reorders priorities but doesn't have to be a life sentence of pain and helplessness
Sunday, February 15, 2004
San Francisco Chronicle
Two months before her 30th birthday, Amelia Davis could no longer dodge, deceive or outrun the disease that had been stalking her for years.
"I probably should have been diagnosed in my early 20s when I was in college," said the San Francisco photographer, now 35. "But the symptoms always went away as suddenly as they came. I kept thinking, 'I'm too young, this couldn't be happening to me.' "
But after two terrifying, temporary episodes -- blindness in one eye, numbness in both hands -- Davis woke up one morning in 1998 with no feeling in her entire body. She had no choice but to find out what the hell was wrong.
The diagnosis: relapsing-remitting multiple sclerosis. She thought her work -- and life -- were over.
"The first image that came to my mind was a wheelchair," she said. "I've since learned that's not always the case."
In creating her new book, "My Story: A Photographic Essay of Life With Multiple Sclerosis," Davis learned a lot more about MS and the people who have it. Thirty-one of them -- and many of their caregivers -- join her to trash stereotypes, confront fears, offer hope, tell the truth and put 32 human faces on a mysterious illness that is often misunderstood. (The book will be released March 12 by Demos Medical Publishing.)
"A lot of people confuse MS with muscular dystrophy or Parkinson's, which has some similar symptoms. The general public has no clue about these diseases, " she said. "And when it comes to chronic illness, society doesn't want to know. People don't want to look at reality. It's 'too depressing.' This book is my way of trying to get them to look."
A San Francisco native who graduated with a degree in studio art from UC Davis, Amelia Davis already has a history of making society look. Her superb photo book about breast cancer survivors, "The First Look," was published by the University of Illinois Press in 2000 and broke photographic, medical and social ground.
More than two dozen women who had surgery for breast cancer allowed Davis to photograph their scarred or reconstructed chests. Their ages ranged from 25 to 76. Pro that she is, Davis managed to capture the stunning reality of a mastectomy without robbing each woman of her innate beauty, feminity and human wholeness.
Davis' "day job" is to assist the notorious genius of rock and blues photography Jim Marshall, whom she terms "a great mentor." Auburn-haired and elfin-faced, she lives in a comfy, high-ceilinged apartment on a quiet street in the Castro with her partner of 13 years, Bonita Passarelli, the executive chef for Williams-Sonoma. Two cats, Koko and C.C., and a mobile little cartoon of a dog, Max, round out the household.
As in "My Story," Davis accompanied "The First Look" photos with her subjects' own words on battling and surviving their illness. Those observations took on new and deeper meaning in the days after she learned she had MS.
"When I was first diagnosed, I took the book ("The First Look") and read through everybody's statements. It really helped me deal with it," she said. "Even though it's not the same disease, the emotions are the same."
Kelly, a 31-year-old who was diagnosed with MS when she was 16, put it this way: "Disbelief and denial were my initial reactions, keeping my feelings hidden from even my best friend. My competitive spirit was gone and I was angry. A deep black hole of depression encompassed my soul."
Jackie, happily married and a mother of three when she learned she had the disease, was 39.
"I felt my entire world collapse around me," she writes. "Suddenly, I was immobile -- forced to rely on a motorized scooter to get around, and suffering from fatigue. I became withdrawn and depressed. I kept asking, 'Why me?' I thought perhaps I was being punished for having such a wonderful life - - a life filled with family activities, athletics and an active social life."
Richard, now 55, was diagnosed when he was 25 and "an ambitious television journalist."
"My constant companion in life is not my mate, nor my loyal dog," he says. "It is my illness, touching everything I do and defining who I am. ... I cannot get the damned disease out of the house. I have tangoed and tangled, doing battle with MS for my entire adult life."
Davis took care to include the negative feelings of her subjects as well as the grateful and triumphant assessments that ultimately dominate their accounts.
"I did very minimal editing of all the people because I wanted it to be their voice. Everybody's experience is different," she said.
So are their jobs, ages, relationships, levels of physical health, the medication they do or don't take, and their spiritual beliefs.
Many of Davis' fellow MS patients were highly athletic before their diagnosis; a surprising number still are.
Lisa, 37, and Maureen, 38, fought to regain their competitive bicycling status. Wendy, 49, has run the Boston Marathon and climbed Mount McKinley since her diagnosis five years ago. Liane, 25, has continued to dance and sing and compete in beauty pageants. Eric, 70, has become a master teacher of Iyengar yoga. Phil, 46, gave up water ski jumping for sport sailing. Dave, 38, went from a wheelchair and total paralysis to walking with a cane then skydiving.
Even the people in wheelchairs -- every new MS patient's admitted worst nightmare -- have tended to move forward, not backward, in their quest to keep control of their lives. Linda, 51, who went from a cane to a walker to a wheelchair, found a personal trainer to help her maximize every bit of strength and tone she possesses. One of Davis' photos of her is a sexy-tender shot in which Linda's husband, Kenny, carries her in his arms as the couple kiss.
Two actors are part of the book: the comedian Richard Pryor and David Lander, a theater veteran who played Squiggy on the TV show "Laverne and Shirley." Pryor's wife, Jennifer, contributed the foreword to "My Story."
Lander kept his MS a secret until 1999, then wrote eloquently and poignantly about the common fear of being found out in his book, "Fall Down Laughing: How Squiggy Caught Multiple Sclerosis and Didn't Tell Nobody." More than once, he encouraged colleagues to think his slurred speech and unsteady gait were because he was a drunk; it carried less of a stigma in Hollywood than a neuromuscular disease.
Davis counts herself among the fortunate to have avoided the MS closet. She credits her boss, Marshall, for understanding and accommodating her bouts with fatigue and short-term memory loss and for supporting her freelance book work.
So, too, she says she could not have made it without Passarelli, her primary caregiver.
"I know it was scary for her, but she has been great since I was first diagnosed," said Davis.
"That's why it was very important to me to include the voices of the caregivers in the book. MS is represented to the public by the people who have it, but the disease affects many more people. I really wanted to recognize them, publicly."
Befitting a starving artist, Davis produced "My Story" on a tiny $35,000 grant, most of which was spent on travel to photograph her subjects. The funds came not from one of the pharmaceutical companies who make life-enhancing drugs for MS patients but from all four major companies.
"I was very up-front about it with all of them and told them this was a book to educate people about MS and that we were not going to mention specific drugs," she said. "I didn't expect it -- they're competing with each other - - but they all gave me money."
The Northern California Chapter of the National Multiple Sclerosis Society helped, too. Terence Keane, a spokesman for the organization, said that Davis' book "does not blink when confronted with the difficult details of life with MS" but "always offers glimpses of love, laughter and tenacity, which prove that there is life after diagnosis. Amelia's camera is focused on MS, but the resulting images provide a larger picture of the human spirit."
Which, in the end, is the whole point of "My Story."
"MS is not, for me, something I said, 'Oh, great, I'm glad I got it, it's changed my life in wonderful ways,' " said Davis. "It has, but it's also been a bitch."
One of her favorite quotes from the book addresses that dual reality along with the wisdom of staying flexible for all of life's challenges. As Lisa, the mountain bike racer, says: "Some days success may mean winning the race. Yesterday, it just meant finishing it."
Multiple sclerosis is a chronic, progressive disease of the central nervous system. Its cause is unknown and there is no cure.
Nerve tissue in the brain or spinal cord becomes inflamed when the body's immune cells attack it. The myelin sheath (the covering of nerve cells) is destroyed, leaving scars -- "sclerosis" -- which interfere with the normal transmission of nerve impulses. Speech and muscular coordination can be affected, along with bladder function, eyesight, memory, hearing and skin sensitivity.
Although MS is not directly inherited, researchers believe there is a genetic link to susceptibility and that it is probably an autoimmune disorder. The northern United States and northern Europe, New Zealand and southern Australia have the highest incidence of MS. More women than men develop it. The disease occurs in about 1 in 1,000 people, usually at 20 to 50 years old.
For people with the most common form of the disease, relapsing-remitting MS, four drugs are available to mitigate its symptoms and slow its progress. In 1998, the National Multiple Sclerosis Society officially recommended their use as soon after diagnosis as possible. A fifth medication is available to people with more progressive forms.
For more information contact the Northern California Chapter of the
National Multiple Sclerosis Society at (800) 344-4867. Amelia Davis' "My
Story" can be ordered online, including through its publisher, www.demosmedpub.com.
Copyright © 2004, San Francisco Chronicle