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.
