Sunday, December 17, 2017
This morning I had a sudden crying jag. Watching the closing credits of Saturday Night Live, I see the cast ice skating. I haven’t ice skated in years. Initially I thought that would be a fun thing to do again. A beat later I realized that I probably wouldn’t be able to anymore. MS progression has made my feet unreliable. Sometimes when I’m walking in shoes that aren’t flats, my ankles turn in and my walking falters. Occasionally it happens when I’m wearing flats. Even when I focus on keeping my feet steady, they sometimes give out repeatedly. Surely skating is harder given my progressing limitations.
I used to roller skate and roller blade. Maybe I could try that. And maybe it would be impossible for me to stay balanced. I could try, but it would take a lot of effort to get the equipment. I anticipate extreme frustration if it’s not doable for me anymore. But maybe I could if it was in the morning on a good day.
This is grief. Utter sadness for loss. I get that losing abilities comes with aging, but I see examples online of people who with dedication and effort maintain impressive abilities long into advanced age. I put the work in, but I can see that I may not be able to halt or reverse the impact MS is having on my body. And the changes will continue.
When I read or watch stories about people with MS – Annette Funicello, Richard Pryor, David Lander (Squiggy from Laverne & Shirley), and others who had an extremely rough time of it – it makes me think of something I heard about ballerinas a long time ago. I remember hearing that when a dancer is injured, they take her off the stage and a new ballerina takes her place.
It seems like with extreme health issues, people get set aside. They’re given up on, disregarded and left behind. Try not to think about how bad it is for them.
People say, “If I ever get that way, I’d kill myself.” Please. No. Just no. It breaks my heart, and I think you’re not giving it the thought you think you are. You’re also implying that others won’t have value if they get that way. Intentionally or not, you’re suggesting they should end their lives if they ever become disabled.
I worry that people will expect too much of me and judge me for my choices or for falling short. I worry people will give up on me and dismiss me while I’m still able to contribute, achieve and succeed. Yes, I’m trying to have it both ways. I know people can’t read minds and that my invisible symptoms don’t accurately reveal my health status in each moment. I try to be aware of how I’m doing and accurately answer people when they ask.
In my life, I try to assure people that while my health could reach those levels that it isn’t there yet. I hope people won’t give up on me, and I mentally prepare responses to people who may dismiss me in my career or otherwise. But I’m really reminding myself that I can’t give up on me.
For now, emotionally coping is among the hardest parts of dealing with my disease. The moments that sneak up on me are the toughest. I think I’m doing it as best as possible. But part of it requires feeling lousy, letting myself feel crummy, picking myself up and finding a path to feeling empowered.
I know I’m not being dramatic about this. I’m being realistic about my potential future. When I was diagnosed in 2008, I read a statistic that the majority of people with MS will likely need assistance walking (with a cane, walker, crutches or wheelchair) within ten years of diagnosis.
According to the National Institute of Health, odds are improved since then.
“Multiple sclerosis is seldom fatal and life expectancy is shortened by only a few months. Concerns about prognosis center primarily on the quality of life and prospects for disability. Most patients and physicians harbor an unfounded view of MS as a relentlessly progressive, inevitably disabling disease. The truth is that 15 years after the onset of MS, only about 20% of patients are bedridden or institutionalized. Another 20% may require a wheelchair, or use crutches, or a cane to ambulate, but fully 60% will be ambulatory without assistance and some will have little deficit at all. Perhaps as many as 1/3 of all patients with MS go through life without any persistent disability, and suffer only intermittent, transient episodes of symptoms.”
This means that "only" 40% will need assistance within 15 years. It means 2/3 of all patients with MS do live with some persistent disability eventually. I know my MRI scans, and my disease has more damage in my spinal cord than my brain. Yes, it’s great that my mind may not be as affected. Truly it is. Sadly though, I’m more likely to have issues with walking and related symptoms.
When I feel this way, I try to work out why I’m feeling sad, sit with it, and then find a related small success. I’m not giving up on my body. I’m going to keep trying, monitor how I’m doing, and adjust my goals and activities as I go. I’ll keep doing what I’ve been doing.
I know my coordination is faltering. I look fine, and I’m grateful for that. I am capable, and I still do A LOT. I’m thankful for what I can do. I appreciate the activities my body will allow. I know that how I’m doing today may be the best it will ever be again. I also know that with determination and diligence I may be able to improve my agility, balance and endurance. I’ll only know for sure with time and effort. Regardless, the outcome is not wholly within my control.
With all of this running through my mind, I laced up my jogging shoes and headed out for a run. I planned to see how I felt in the first mile and then decide how far I could go today. I resolve the key is that I keep trying and enjoy every accomplishment. If I can’t go far or fast today, maybe I will tomorrow. Today I managed well. I jogged a slower pace with a longer distance than usual. It was tough but felt great.
Later I spent time with friends laughing and enjoying life. All things considered, life is pretty great.