Multiple Sclerosis is a weird condition. It’s different for everyone who has it. Your own condition is even a different experience everyday. I’ve lived with it for a long time now (at least 16 years), and it’s still surprising.
It’s also not what most people expect. In the popular consciousness, it’s associated with impaired mobility. That is a common challenge we face. Most of the time, I get around pretty well (if a bit slower). I rarely use a cane. It’s typically only a problem when I get tired or overheated: then my balance deteriorates rapidly and I might sway around like I’m drunk. It draws some funny looks, because a look “normal,” but I can still function.
For me, the bellwether symptom is my left foot. On good days, I can feel my legs; but on bad days, they grow numb and tingly — beginning with that left foot. On really bad days, my legs just disappear below my knees.
So I’ve had to figure out accommodations. I never go barefoot…and I learned that lesson the hard way. A few years ago, unbeknownst to me, one of the kids had broken a glass dish in the kitchen. Sometime later, I traipsed through without thinking and soon was met with a hue and cry from my family.
I hadn’t even felt it when I’d stepped on a broken shard of glass, embedded it deep in my foot, and tracked bloody prints all over the house. Barefoot stopped then for me.
Not feeling your legs becomes inconvenient in surprising ways. I have to watch for solid, even footing when I walk. If it’s dark, I tend to scoot my feet along to compensate a bit for not being able to see obstructions. I absent-mindedly check my legs and feet for injuries I haven’t yet noticed.
And then there’s skydiving.
It was something I used to like to do, but (before I was even diagnosed) as my body started betraying me in small, unpredictable ways, I grew less confident and (not really noticing in the moment) began withdrawing from the world. Without a conscious decision, one day I noticed that I hadn’t even thought about going skydiving in a long time.
And this is something I really enjoy. So a couple of years ago, I decided that I’d get back to it. But I had a challenge: how do I land a chute when I can’t feel my legs?
I practiced jumping off moderately high boxes and learned to “feel” the landing by the pressure in my knees. And it worked!
A little creativity and accommodation, and I was able to reclaim an activity I loved.
In the larger scheme, it’s not a big deal. Jumping out of perfectly good airplanes isn’t necessary to my life, but it is a joyful, defiant, and life-affirming experience for me. It’s a way of exclaiming that this disease won’t get the best of me.
I’m not suggesting that everyone jump out of airplanes (although, if you think you’d like it, I’d highly recommend it). But I am suggesting that every single one of us have these small, joyful activities that add to our lives. These are the things that most easily slip away when we’re diagnosed with an illness — or facing some other extended stressors.
One by one, we let them go and soon we find that we’re no longer living. We’re just existing.
So my question to you is: what have you let slip? A sport, a game, a relationship, an activity… There’s something that used to be joyful in your life that you’ve let slide in the press of “important” demands. There’s something that you want to do that you keep putting off.
We get caught up in the things that seem urgent and we let these truly important things go. We are extraordinarily unkind to our future selves: these are the memories we’ll someday be grateful we made.
I am grateful to that past version of me who decided to reclaim the experience of skydiving — even when I can’t feel my legs. Some people are surprised I do this, but my response is that your limits are not where you think they are.
So do it. Take some time this week to make that future memory you’ll cherish.