I flatter myself that the wedding ring on my finger does not stop the opposite sex from finding me attractive and noticing me. On good days, I am able to appear to be just as attractive and “normal” as everyone else does, if you do not look too closely. My apparent normalcy does however hinder and frustrate me at times, much as I strive for it.
At the grocery store, the elderly woman in front of me is granted patience and helped to her car with her bags. If there is no seat available on the subway, no one steps up to offer me his or hers. When using the handicapped washroom I am eyed with suspicion. Once I had to use the Men’s to avoid a messy embarrassment, for which I was loudly jeered. Confronted in a parking lot, I have been accused of using my parents’ handicapped parking permit. I’ve been accused of not really needing my cane, and shunned because it was assumed that I had been drinking. These types of incidents are too exhaustive to numerate here. Unfortunately for everyone involved, whether they know they are or not, ignorance is not bliss. No one, neither others nor I benefit from narrow mindedness or their inability to conceive of necessities and challenges that are not visibly forthcoming.
Here is my personal ad: attractive natural strawberry blonde, 35, nonsmoking, university educated, 5’7”, enjoys books, classical music, evenings in front of the fire with a glass of red wine. Has a dark, dry, sense of humour. Here is my most personal ad: attractive natural strawberry blonde, 35, noticeable intention tremor, (I make a mean martini.). Sometimes incontinent (Hope you do not mind diapers), sometimes slurred speech or double vision (Even without wine). Sloppy legs and right foot, cane sometimes necessary (Please, I am tired of three legged jokes). At times dizzy and wobbly (not from my hair colour). The worst is yet to come, no known cure. Call before 8 p.m. as I am usually in bed shortly thereafter.
There are two jokes that I usually make when telling someone that I have Multiple Sclerosis. The first comes from my brother who, with what he has dealt with has earned the right to joke about it. “I do not have MS, I have PMS and the P is silent.” The second came from me not enunciating properly and catching a pun. “I have A Mess.” Clever, I thought, as I feel like I am quite a mess at times. When I was in tears upon reading a recent MRI report, “…generalized cerebral atrophy…prominent for the patient’s age…” my brother quipped “You have a trophy in your head?!” Brilliant, I thought. Yes, I can laugh and joke about my deteriorating body and myself. I can make light of things most people would find abhorrent, and manage to live with it all, with the help and love of others. I draw the line however, at thoughtless, hurtful comments and situations from total strangers who do not know me nor my situation. People who are not willing to think that maybe, just maybe, there is good reason for whatever it is they feel necessary, or that it is their right, to take me to task for. Worse yet, are those who are aware of my disease, but behave as though it does not always exist. Those who look the other way and do not lend helping hands, who sit in judgment, not bothering to learn how, or simply ask me how to help.
Yes, shield your children and yourselves from me. I represent what most of you cannot cope with—the unknown, the ugly. The fear that it might have been you or it might still yet be someone you love. Perhaps the thought is that I should feel embarrassed for my situation, so others ignore it for my sake. It is quite the contrary—people should feel embarrassed for their lack of effort and empathy. I am not to blame for having this disease. Our society teaches us not to stare or ask questions, it is rude to do so. We offer a hand to the elderly person who trips, but look away from the sight of a young woman stumbling along, slurring, she might be on drugs, or drunk, or mentally incapacitated. Her poor husband, he must put up with so much. This is my public billboard for Multiple Sclerosis. Do not dare prejudge, I am the girl next door. It is difficult enough for me without your ignorance, to deal with something even my doctors and I have difficulty comprehending. Thank you to those who have bothered to learn how to be of help. Thank you for all the times you have carried me up or down stairs, helped me laugh at myself and were not embarrassed by my condition, or offered a helping hand. I wish that everyone had a taste of this kind of love and devotion in their life, though of course, not this way.
Sharon Roman studied economics at the University of Toronto and Simon Fraser University. She had her first MS attack around the age of 30.
Competing interests: None declared.