I hope you’re enjoying learning more about multiple sclerosis and disability. I’ve recently started attending an adaptive yoga studio in Minneapolis called Mind Body Solutions. It’s a wonderful community dedicated to working with people with disabilities. Founder, Matthew Sanford often talks about how important it is for people with disabilities to share their stories in order to open the eyes of able-bodied people and create change. That’s nice confirmation for me with my writings - thank you for being open to learning.
Before I get into today’s post, I think it’s important to clarify that not everyone with MS ends up disabled. It’s hard to find statistics about how many people with MS will end up disabled, but disability generally happens 15-20 years after diagnosis. The National MS Society (NMSS) states, “Two-thirds of people who have MS remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair (when fatigued)” suggesting that one-third of people diagnosed will be permanently disabled. They also note that medications and treatments are improving all the time, so someone diagnosed today has a much greater chance of doing well than someone who was diagnosed twenty years ago.
Thank you so much for your support and comments.
Jane & Emily
You know when you buy a new car and then you suddenly start seeing the same model everywhere, or you’re about to book a vacation and then you see the place on TV; multiple sclerosis, although not new for me, is the thing I notice.
When the horrific war on Ukraine began a few weeks ago, I wondered what was going to happen to Ukrainians with MS who were sick or disabled. If they had progressed states of the illness would they be able to escape? Then last week, on the national news there was a story about the second American to be killed by Russians in Ukraine. Sixty-seven-year-old Jimmy Hill from Minnesota lived there with his partner, Ira. Jimmy and several others were shot while standing in line to buy bread. But why was he still there? Why hadn’t he and Ira left when the war was announced? According to the news he had stayed to care for her. She was in hospital, sick with MS.
I had a similar occurrence during the horrific wildfires in Northern California in 2017. I was living in Sonoma, California and the skies were full of smoke. The fires had swept through neighborhoods and the news was full of stories of people being unable to escape, many were older and used mobility devices. I was curious specifically about people with MS and what would happen to them if they were caught in the fires. Sure enough, a news story came on about Barbara McWilliams who was unable to escape from her home due to multiple sclerosis. Her caretaker said, “I knew she would be stuck, I knew she would have no way of getting out.”
Since becoming disabled in August 2021, just like I struggle getting into bed (see S is for Small Success), I often can’t get out of bed on my own. I’m unable to move my legs to the side of the bed to flop them over and begin the process of wiggling myself up and out, so T has to help me. If I allow myself to freak out, I struggle like an upside-down tortoise. What if the house catches fire or someone breaks in?
I know war and wildfires aren’t common, and I know it’s unlikely someone will break in while I’m in bed, but I’m guessing I can’t be the only paraplegic person who’s unable to get themself out of bed all the time. Combatting the feeling of being stranded requires a huge amount of trust in the universe, and for many of us with MS, the universe hasn’t always given us many reasons to be trusted.