BIANCA TORREZ
bdtr_93@yahoo.com
LIVING WITH MS
Michelle's Story
Multiple Sclerosis (MS) is an unpredictable and often disabling disease. Michelle is just one of many people who suffer from the effects of MS. Over 350 thousand people have MS in the United States alone. According to the National MS Society, MS involves an abnormal response of the body’s immune system and is directed against the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. This is why people living with MS can potentially become blind and even handicapped. For more information on this disease please visit the National Multiple Sclerosis Society.
Michelle’s story starts when her symptoms first surfaced. She noticed her leg wasn’t responding like normal and her vision became blurred. She went to the doctor and was misdiagnosed for almost 20 years until she was correctly diagnosed with MS after a spinal tap procedure. Living in New York for Michelle was great, but came with more than a few setbacks when she lost motor functions. New York is an older city with at the time of her diagnosis had no means for easy accessibility. Losing mobility cost Michelle more than a few trips around town; it cost her, her ability to visit family, friends and local venues. When the attacks to the World Trade Center struck the nation on September 11, 2001, Michelle knew her daily struggle would be more of a challenge. The city was in chaos and Michelle was unable to get around without difficulty. The challenge became too great and Michelle made the decision to move to Colorado.
Photos from March-April 2016
Michelle was diagnosed with MS when she was 37-years-old. She says, "Always remember, a diagnosis is not a cure. It only points in a direction."
Eyes aren't always 20/20 and as time progresses it gets harder for Michelle to see. MS attacks all parts of the body and vision is no different. She keeps a pair of glasses with her at all times just in case she needs to put them on.
MS can cause chronic pain and discomfort. she says, "The drugs are there to control the many diverse symptoms that I experience."
Michelle's computer is her lifeline. She uses an electronic calendar to keep her appointments organized.
Listening and being able to communicate effectively are important for Michelle. The best way for her to do this is through email. Since her eyes are progressively getting worse and her hand movement is limited she relies on her computer microphone to type for her. In addition there is a zoom on her computer screen to help her see what she normally cannot.
As MS slowly takes over her body her hands began to tense up. She is unable to open and close her hand with ease and must finger pick at the keyboard when her microphone is not working.
Michelle has two birds: Cinnamon (mini) and Pepper. She calls them her "Spice Girls."
Michelle spends most of her time inside. Her furniture and fixtures are placed perfectly so she can maneuver from room to room. Michelle has to make sure the doorways are clear so that she has a pathway to get through.
Because Michelle has optic nerve damage from MS, she listens to most of her books. She has an audio book machine that she acquired from the Library of Congress. She says. "I don't do much other than talk and listen to all my books." Marcel Proust, is among one of her favorite authors to listen to.
Taking a shower can be a big deal without the proper help. Since Michelle is unable to move around with ease, she depends on this shower set up to maintain her personal hygiene.
The equipment Michelle depends on for basic bodily functions are not cheap. Special renovations and adjustments had to be made to her overall restroom area.
This device is important to make sure Michelle is comfortable. This machine is used to help her in and out of her bed.
Sometimes the hardest thing for handicapped people is the financial burden it places on a household. Not only did Michelle have to pay for personal necessary equipment, she had to make mandatory renovations to her household. Since Michelle is wheelchair-bound she must have a ramp to get in and out of her home. She is unable to go to many places due to lack of accessibility because most homes have 1 or 2 steps to enter or exit.
Michelle requires a lot of help to get through her day to day routine. Roger has been by her side for over 30 years to help her when needed. Roger must prepare all of Michelle’s meals. Here, Roger prepares dinner by first peeling and rinsing off a potato. Since Michelle cannot help him in the process she always keeps him company.
Michelle patiently awaits for dinner to be served and mentions that while she lived in New York there were so many great places to eat. However, Fort Collins has more wheelchair accessible options for her to dine at. After the terrorist attacks on 9/11 it was hard for her to get around, "I was the only wheelchair out and about. It was hard to get around." This is what helped prompt Roger and Michelle to move to Colorado.
Since Michelle is slowly losing her ability to use her hand she struggles to pick up certain dishes and cups. She uses the mug with the straw in it most frequently because it is light and easier for her to manage. Though Michelle loves beer, she doesn’t drink it from a straw. These beer glasses are light enough for her to pick up so she likes being able to have the option to do so.
Michelle waits for Roger to serve himself a plate so he can help her eat. Plate presentation is important to Roger because he has to mash up her food so she can begin eating.
Roger grabs a fork to begin mashing up the food to make sure Michelle can eat it with a spoon. Michelle can feed herself with a spoon but is unable to use a knife and fork to portion out her bites herself.
Though Michelle is able to lift the beer glass it isn’t long before her arm tires out and she depends on Roger to help her drink her beer. “Sometimes when the glass is too full, it’s heavy and I can’t lift it,” she says.
Michelle says that when people stare at her in her wheelchair, she pretends she is a movie star and she waves at them in greeting. "Being stared at is very awkward," and she wonders, "why anyone would want to be a movie star? Except for the money of course."