Assuming is not knowing…

pic 2 sickSome 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.

pic 3 sickThe 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.

pic 4I 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.

the stae 2When 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.

walkeringA 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.

last picThese 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.

Continuation Isolation nation …

pic 1 lifeI typically get my blog ideas from my life experiences as I muddle through my daily existence. How someone interacts with me or maybe has an attitude and verbalizes it gives me some ideas. I might write about a fall I had or how a piece of equipment helps me in some particular way. A few times, a TV show or movie has widened my eyes to an issue that has allowed me to feed the brains of my readers about MS. There have been times when a book and even a song helped mold a blog topic that made a difference in at least one person’s life.

However, as I sit here in a house full of only me, my blog topic ideas continue to dwindle. The blog concepts have shrunk so low you have to use numbers scientists use when measuring atoms to count them. I am struggling to find a topic that I can discuss in a valuable way leading to education information that I can share. I have a handful of followers and readers, and I want to make any time they spend on my website worth their time, so they return.

pic 2 eduIn this seclusion delusion, we find ourselves in I am struggling mentally, physically, and even emotionally. My brain and my emotions battle with each other in search of any blog ideas that can help me educate anyone who still reads my writings. Physically my exercise options are significantly limited not only restrained by my lack of abilities but by the fact that I am alone. There is no one here to keep me accountable, and that fact allows me to limit what I do.

I still keep myself on the same sleep schedule, waking up early and going to bed early. I do this so that in a few years, whenever they open the pool up again, I will be able to return without difficulty. I also keep a similar daily routine, trying not to mess up my daily duty procedures, all in hopes of making my returning transitioning less stressful. I still take a brief twenty-minute nap as not to mess up my nighttime slumber practices.

pic 3 health fdoodI try to eat healthier to avoid gaining weight so that seat to seat transfers are as safe as possible. I eat only three meals a day and do not snack throughout the day to again lessen the chance of my midsection swelling unnecessarily. I also eat on a schedule and limit the volume of my food to keep me from engulfing all the food I have. Lastly, I do not eat candy or sugary sweets I fend off fast-food, and dodge deep-fried meals as these all can help pack on the pounds.

pic lastI understand that this quarantine is hard on us, forcing us to do things and be places that we usually are not. I do not know about anyone else, but the consequences from this lockdown will have devastating setbacks that will last for years. This solitary confinement will still have such negative impacts even with all of my cautious preparedness. So I say to anyone reading these written words do you a favor and hope for the best but plan for the worst.

Think smarter, not harder.