"The Face of MS" 

      by Cindy McManus, aka Quanite



You say you want to learn more about MS, who gets it and what it is like to live with it daily? Rather than just trying to tell you, I would like to introduce you to some of the people here so you can see for yourself. See if you can tell who has MS, and who is a friend, relative or caretaker of someone with MS. It may not be as easy as you think.

First, I’d like you to meet Anna. She’s the young lady serving refreshments. Anna works at the restaurant down the street, and she also goes to school full-time. In her spare time, she sings in a small chorus group that does charity shows and does volunteer work with a local youth center. She is usually very well-organized and almost always has a smile for everybody.

Next, I’d like you to meet Allen. He’s the elderly man half dozing in the corner by the door. Allen retired from his job as an electrical engineer about five years ago, and now spends most of his time sleeping, gardening, reading or giving advice to anyone who will listen. He may not always give great advice, but he knows a lot and is willing to share most of it.

Next, I’d like you to meet Betty. She’s thought of around here as everybody’s grandmother. Betty raised a large family and loves to cook – a real asset at every get-together we have. She is always willing to lend an ear if you have a problem, but may tell or ask you the same things several times before realizing it’s already been said. She says it’s one of the most annoying things about getting old.

Next, I’d like you to meet Ben. He’s the impatient young man over by the window. Ben works here, and will be responsible for almost all the cleaning when we finish. He usually spends most of his time pacing the floor, looking out the window and looking his watch, but he will sometimes join in when Gordy gets started with his jokes.

The two racing toward the bathrooms are Cora and Chuck. Chuck is really proud of his racing scooter, and never misses a chance to show it off. He’s a pediatrician at the clinic down the street. Cora just got her new chair, and she’s bound and determined to beat him in a race at least once with it. Cora is the pharmacist at the pharmacy by the clinic.

Next, I’d like you to meet Erin. She’s the one sitting at that front table yawning. Erin has three young children at home, and is always exhausted from trying to take care of them and keep up the house. She did recently hire a girl to help her with cleaning, and is hoping it will help her keep up and still have a little energy left for herself once in a while.

Next, I’d like you to meet Eddie. He’s the one laughing uncontrollably because Irene’s aim was off and she knocked her coffee over. If you ever want a good audience for your jokes, he’s your man. Eddie will laugh at anything; in fact, many times he just laughs for the sake of laughing.

Next, I’d like you to meet Fran. She’s sometimes called the “anti-Eddie.” She doesn’t have much of a sense of humor, and is more likely to fly off the handle or just break down crying if you make a joke she thinks is in any way at her expense. Of course, she’s just as likely to do it if she drops her pencil, doesn’t get the chair she wanted, is interrupted, or for no apparent reason at all.

Next, I’d like you to meet Fred. He’s the one over there rattling the table with his constantly tapping foot. You’d never guess to look at him that he has the patience of a saint. Fred will sit for an hour waiting for you to get your shoe tied, and never show any signs of annoyance.

Next, I’d like you to meet Gretchen. Gretchen doesn’t make it as often as she used to, but does her best. She’s a very spiritual person, but is really feeling tested these days. She continues to keep hope that she will adjust to all the changes in her body this last year.

Next, I’d like you to meet Gordy. It’s never hard to spot him; just look to the place where you hear the most laughing. Gordy is our resident clown. He owned the auto shop out on the highway until his eyesight and tremors got so bad he had to give it up. In spite of that, he is almost always upbeat and full of jokes. He’s probably not the one you’d go to if you were just looking for quiet reassurance, but he’s probably the first one you’d go to if you needed cheering up.

Next, I’d like you to meet Helen. She’s the woman over there massaging her forehead. Helen has been a fourth grade teacher for eight years now. She spends all day trying to keep 30 kids in line and then wonders why she has constant headaches and muscle spasms! She has always been a favorite of the students, but is considering giving it up because it’s hard to focus on the lessons, or take them on field trips, when she has to deal with pain.

Next, I’d like you to meet Hank. He’s the one wiping the spilled coffee from the table over there. Hank doesn’t usually try to talk, but he does still communicate rather well. When he does say anything, it may be hard to figure out what it is. If he does manage to get words out, they don’t always make much sense. Luckily, he is a whiz on a computer, and has been able to continue doing his programming and communicating through text.

Next, I’d like you to meet Irene. She’s the one who is all flustered and crying about being so clumsy. Irene is very easily disoriented around crowds. She doesn’t do well in conversation when there is a lot of distraction, but she is a fun and interesting person when you talk to her in quiet settings. She’s always loved people, and she keeps coming and hoping that she’ll be able to do a little socializing before she gets too anxious or depressed and has to leave.

Next, I’d like you to meet Ivan. Nobody is really sure why he comes, but he’s here every time we get together. Ivan isn’t very sociable; he will respond if you talk to him, but he seems to have no real interest in interacting with others. He seldom smiles, frowns, talks or participates in events, and he has never shown any sign of feeling or any kind of emotion. People used to try to figure out if he hides his feelings but we’ve all learned to just accept him as he is.

I’d like to introduce everyone, but there really isn’t time, so I’ll tell you about myself. I am a student, mother, business owner and a pest. I do volunteer work at the animal shelter in town, and as part of a group that does community improvement, raise funds for various charities, library books, college scholarships, and other services. I do use this cane most of the time, but I can walk without it if I have to. It helps me keep on a straight path, and being the klutz I am, keeps me on my feet when I trip over something I don’t see.

OK, ready for the test? Which of these people has MS, and which don’t? At first glance, it might seem obvious, but it may be a bit more difficult to tell. We have here four people who use wheelchairs, three using scooters, six using walkers, 13 using canes or walking sticks, and 14 walking without any assistance. The youngest person here is 15, and the oldest is 78. At this time, 14 work full-time, 11 work part-time, four are in school rather than working, three are stay-at-home parents and eight are either retired or on some form of disability. Think you have it figured out? Are you ready for the answer?

Some of us are also friends, relatives and caretakers of others, but everybody here has MS. That is what makes MS so hard to understand and to live with; MS doesn’t have a face of its own. It doesn’t discriminate between young and old, smart and not-so-smart, happy and melancholy or anyone else. When a person is diagnosed with Multiple Sclerosis, there is no way to know which course it will take. That is one of the most difficult facets of living with MS - the unknown.

Although MS may affect each of us differently, we do have some basic things in common. We will never be free of the disease until a cure is found, we are more likely to get worse than to get better, we live every day with the threat of future disabilities hanging over our heads and we all need something positive to hold on to. Next time you want to know what the face of MS looks like, go look in your mirror. It looks like everybody, and it looks like nobody; it just is.

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