Some people think MS is contagious, like a virus that causes people to fear and avoid us. Others believe that we have mental problems making them ignore and reject us. Some individuals feel multiple sclerosis is simply a made-up illness, so they want to shun us. However, MS is a real and debilitative medical condition that can ruin lives, friendships, and even families.
People can quickly put their foot in their mouths when interacting with disabled people. When anyone uses a cane, walker, wheelchair, or some other personal transport device, strangers can visually see the need. It is when the disability is not visible when people can become a know-it-all and can be obnoxious. I heard it once said it is better to keep your mouth shut and appear stupid then open it and remove all doubt. Sadly enough, people do not follow this sage advice.
The other day I woke up on a swim day, and something felt a little off. I had a challenging start to the day, but I was not about to give in. I was moving slower with a hint of weakness in my arms. Thankfully I always plan for an extra thirty minutes or more for unexpected MS and other life issues.
COTA made me over an hour later to the pool than usual, and at this point, I was late, starving, and flustered. After this frustrating morning, I finally was ready to get into the pool. I pulled up next to the chairlift and should have paid attention to the warning signs within as I felt an internal quiver. As I transferred to the chairlift, I landed very close to the edge in a precarious position. Within the span of a blink CRASH and down, I went hitting the concrete floor. I did not say anything, but I hurt my hip and my hand a little. Sadly I hurt my pride much more that morning. Thankfully a lifeguard was standing there and lifted me to the seat.
I have been a member of my pool for over a year and never dealt with a debacle like that. I say all that to say this: there was an older woman in the pool, and her first words were you should get a caregiver. I let her know that I live alone and one hundred percent take care of myself and that this was the first time that I have ever had this happen at the pool. I told her not to worry if I show no fear.
When my friend Janet found out that I was diagnosed with MS, she asked me, “how long?” “How long what?” I asked. “How long have you been given to live?” she queried. I had to explain that multiple sclerosis is not a death sentence and told her that I have the same life expectancy as anyone else. “I will live longer than some people and not as long as others just like you” I explained.
When I was planning to move, my former neighbor Jeff said to me, “you should move into an assisted living facility.” “Why,” I questioned. “Because of…you know…your MS” he said sheepishly. I reiterated that I live alone now with no problems. I reminded Jeff that people live with this condition both alone and with families all of the time.
Right after my diagnosis, I was assisting my friend Mark with his kitchen remodel. Mark, Jim, and I worked hard to get this kitchen back in working condition before Mark’s wife returned to town. Jim found out I was diagnosed with MS and kept staring at me all day like he thought I would go into a seizure. He never said anything to me but glared at me during every move I made. It was disturbing, to say the least, at how his eyes were boring a hole in my head as his stare made me feel judged and devalued.
A friend Heather who also has MS was shopping and was using her walker. A little girl saw her and asked her mom, “What is wrong with that lady?” Her mom grabbed her and said, “Be quiet.” Heather went up to the little girl and nicely explained why she used a walker so that a little kid could understand. At that point, Heather looked at the mom and said, “I would prefer to be asked about why I use a walker than being feared.
These real-life stories show how people who do not know how to act or what to say can look bad. The lack of understanding and empathy makes some people double down on saying or doing the wrong thing. I think people act the way they do around the disabled because they do not know what to say or do, and I understand to a point. I mean, you may not know what to say but talk to us like anyone else you see in public. So if you see us smile and say hello and talk to us like anyone might you meet on the street.
We do not fear the unknown. We fear what we think we know about the unknown.