Originally appearing in The Union College Magazine: Spring 1999: Volume 91, Number 4
Rebecca Schwartz, a senior sociology major, didn't think much of her photography assignment at first. A self-described "lousy photographer," she thought the photos in her "love-hate" project were simply "pictures of me and my life with a disease."
But Professor of Photography Martin Benjamin saw something more, and he urged her to write some stream-of-consciousness narratives to go with each photo. In just of few minutes of writing, Schwartz's project became the perfect emotional outlet for all the feelings -- from anger to solace -- she has about her life with multiple sclerosis (MS).
"As Becca was showing me her work and started to talk about it, she was saying these really great things," Benjamin recalls. "She was saying all that she thought she couldn't say. It turned out to be very therapeutic for her."
The book of black-and-white self-portraits opens with a picture of Schwartz in sunglasses, writhing in agony. "When I first got sick, my eyes got real bad and I had to wear sunglasses everywhere," writes Schwartz, of Califon, N.J. "These are the same sunglasses that I wore; they are a reminder to me of my first 'meeting' with MS."
On another page with a photo of syringes, bottles of medication, and a copy of Harold Kushner's When Bad Things Happen to Good People, she writes, "Sometimes I feel like this is my life, all these pills ... when things get bad, I need to numb myself, and have plenty to do it with. It's like I'm being overtaken by this disease ... it's so much bigger than I am."
And on a page with a photo of Schwartz injecting herself with medication, "This one makes people cringe ... I do it once a week. The first few weeks I couldn't even look when I did it. I've gotten a little bit better."
Schwartz says that when people look at the book, they find it "disturbing and dark, but this is me when I'm sick or injecting myself. I didn't realize how powerful it was until people looked at it and told me. I guess that's because it's so 'normal' to me. My book also gives me something to show people, 'look, here is my MS book.' Maybe it will help them understand about illness better."
Schwartz's life with MS has transformed her education. Besides Becca's Little Multiple Sclerosis Book, she has made MS the theme of her senior thesis in sociology, called "Coping in College with MS: Constructing a Disease and Defining a Self. She has searched the World Wide Web and other resources to find other people her age with MS. "I have learned a lot more about the disease both medically and, more importantly, psychologically," she says. "Also, I have contacted other college-age people all over the world with MS, which is the best therapy possible, to e-mail people who actually understand what you are going through."
Much of her thesis will be on the psychological aspects of the disease, for which she will draw heavily on narratives returned in the surveys she is sending to her counterparts at other colleges.
Schwartz has avoided support groups because, she says, "it's scary for me to see people in wheel chairs." Instead, she has preferred to spend time on e-mail and in chat rooms with other college students living with MS, such as a recent University of Buffalo graduate who has become an e-mail pen pal and strong supporter during bouts with the disease. "The Web has been a huge source of support," she says. "My favorite thing to do is talk about it."
Multiple sclerosis is a chronic, often disabling disease of the central nervous system caused by lesions in the myelin sheath that coats nerve fibers. Its cause is unclear. Symptoms may be mild and recurring such as numbness in the limbs (as in Schwartz's case) or severe -- paralysis or loss of vision. Nationwide, there are an estimated 250,000 to 350,000 people with MS, according to the National Multiple Sclerosis Society.
Becca's involvement with MS began when she was seventeen, a student at Gill St. Bernard's School in Gladstone, N.J. A series of bouts with flu-like symptoms was mistakenly attributed to inner-ear infections. In her junior year at Union, she began to have trouble with her eyes. At one point, she began to find there wasn't enough light in the room to study. Then her eyes hurt and were highly sensitive to light. She tried eye drops, waiting to see if the pain would pass, wondering if she needed new glasses.
Finally, she saw a neurologist, who said she could have MS. "At the time, that meant nothing to me," she says. Her father came to Union the following weekend to accompany her for a battery of tests. Though the MRI didn't clearly show the signature lesions of MS, doctors could confirm the disease based on her several years of symptoms and her bout with optic neuritis.
After the diagnosis, the reactions varied. "My family was great, although I think they might have taken it harder than me, even now," she says. "Some friends were very supportive, while others withdrew and now I don't even speak to them. It was hard for me. I would want to talk about it and a lot of people, I could tell, didn't want to hear it."
There were the insensitive remarks. A relative of an ex-boyfriend said, "Perhaps it's for the best that they broke up. After all, she is sick." A fellow student once remarked, "They'll never find a cure."
Schwartz says that her friends now are great. "I've made some 'true' ones and they are there for me. They actually ask me questions! My new boyfriend is wonderful; it doesn't even faze him at all as he watches me do my injections."
Schwartz holds a work-study job in the Sociology Department, where professors seem to have adopted her. "My professors were wonderful and made it all so much easier for me," she says. "Their emotional support has helped me so much. One professor drove me to a doctor's appointment and waited there with me. Others would just sit down and talk with me. Every one was understanding and gave me all the extensions I needed, even though I never used them."
MS hasn't changed the course of Schwartz's plans. She is still interested in her longstanding goal of getting a master's degree in social work and then entering a career in either placing adopted children or working with ill or emotionally disturbed children. During college breaks, she works at a facility for emotionally disturbed girls, a job that she says has helped her better understand people from challenging backgrounds.
At Union, she is a member of the Sociology Club and co-editor of the club's newsletter. A dean's list student, she is also a member of Alpha Kappa Delta, the honor society in sociology.
"Now,
I am really comfortable telling people about my MS," Schwartz says. "I
have nothing to be embarrassed or nervous about. It's a part of me."
One of the last pages of Schwartz's photo book shows a man's hands wrapped around
hers. The caption reads: "This is my boyfriend holding my hands. Sometimes
they hurt, get weak and numb. I ask him to squeeze them for me. It doesn't help,
but it makes me feel better especially when he kisses them."
Sometimes, Schwartz says, she wonders if she has allowed MS to become too large
a part of her life. "At times, I think, 'Enough with MS!' But then I think
that maybe I can help somebody."