Writing and Multiple Sclerosis 2: The Benefits of Limitations

or Falling While Grieving

I know, I know, yesterday, I said I would post less, but last night something happened.

[Previously]

Last night, I fell. In public. On the street. I was walking home from the library after saying goodbye to our beloved branch librarian who is leaving. I was thinking about my wife because I had just been in the room that bears her name. It made me sad to think that the library was changing already. Someone almost ran into me with a bike, but I successfully veered out of his path. My thoughts returned to my wife. As I walked past a pillar, there was someone on the other side of it, walking a bike this time, and perpendicular to me. We didn’t see each other. I had to shift my gait quickly to avoid her. This is when I’m most vulnerable. Most of the time, it just trips me up a bit. This time, because my head was somewhere else, I lost my footing completely and hit the pavement with a thud.

I fall occasionally. It doesn’t happen often, and it’s usually on rough terrain, so it doesn’t upset me. I’m like, What did you expect? This wasn’t like that. It was a flat surface, so it was unusual. It left me a little shook, but it was mainly because I wasn’t paying enough attention.

I used to need a brace because of foot drop. I don’t have that so much anymore, only when I’m fatigued. If I’m walking in crowds or on rough terrain, I use a cane. Walking a couple of miles is fine. After that, I’m slightly at risk, but I’m aware of this. The library is two blocks away. It wasn’t a cane-worthy excursion.

You know the saying, “He can’t walk and chew gum at the same time”? Yeah, that’s me. I’ve adapted to the way I walk. What for most people is automatic, I have to think about. If you are walking with me and we’re talking, you may notice that my attention is divided. I’m listening, but I may also be imagining dribbling a soccer ball with my left foot. This helps with lift. Last night, I was too cocky. I dropped the ball.

I wasn’t hurt. My only injury falling happened when I was walking a dog and she made a surprise move while we were walking uphill. Because I was holding on to her leash, I wasn’t able to fall correctly. Knowing how to fall is part of my skill set. I could get a side gig as a stunt man.

When there are witnesses, it freaks people out. Last night, several kind folks rushed over to check if I was ok and to help me up. I assured them that I was fine and that I didn’t need help. They tried to help anyway, which has the opposite effect—it makes it more difficult for me to get up because I have my own system for this, a workaround that I’ve developed over the years. People don’t know that, of course. I have to keep reassuring them.

This was an area of contention between my wife and me. She was overprotective and wanted to help me in various situations where I didn’t want help. The compulsion to do things myself is strong. It may look like stubbornness to some, but it’s more nuanced than that. I want to do things myself because I need to develop strategic approaches for everyday tasks. I’m pretty successful at it. There are things I can’t do, but not as many as you’d expect. I’m a problem-solver, and I’m fucking good at it.

Not all of my solutions are pretty, like the way I get up from a fall, but hey, they work. I would tell my wife to trust me, that if I needed help, I would ask, but first, let me try to work it out. It was a source of irritation that I had to keep saying that. She couldn’t help herself, though. She loved me. I’ll will never understand why.

You would think that falling in front of people would be mortifying. I used to be highly coordinated. I played various sports all the time when I was young. I did intricate things on the guitar. I never lost my balance. Now, occasionally, I do, but I’m not embarrassed by it. It’s just a fact of life for me. Since MS has been part of my life for so long, it has shaped who I am and how I think and how I view the world. It has made me into someone who innovates and rejects ready answers. My philosophy is almost anything can be improved, and even the smallest improvements are golden. I hate to admit it because it goes against my brand, but I’m an optimist, though one with a pessimist’s eye.

One way I found a workaround for limitations is with guitar playing. Because of an MS flare-up, I have weakness on my left side, not only my left leg, but my left hand. I can’t play guitar like before, which if I say so myself, I was pretty damn good. I could play Blind Lemon Jefferson’s “Black Horse Blues” note for note. You try it.

I was becoming a performer around the time when I lost my dexterity, so I came up with workarounds. When I played in standard tuning, I capoed the guitar higher up the neck where not as much pressure is needed on the strings. Mostly, though, I used open tunings which were less demanding on my fingers. I used a slide on my little finger which can’t do much else. Not only did it work, but it led to a more distinctive style. Paired with a second guitarist often playing in a different tuning and/or playing an octave above or below me, we came up with a sound that we didn’t have before. I was not a good guitarist anymore, but I had a better sound. It’s pretty much the story of my life, so I apply it to other situations.

In my discipline, it’s called “transfer,” when skills acquired from working one task help you in a different task. Dealing with MS since I was young has given me transferable skills. I still wish I’d never come down with it, but the funny thing is, if I didn’t have it, something would be lost, which I’m aware is a weird thing to say.

I try to help others understand. With my writing students, I focused not on perfection, but on small improvements. Small improvements are little miracles. (See, I’m an optimist at heart.) I wanted them to experience the power of incremental change.

Like I’ve mentioned before, it’s not what you’ve got but what you do with what you’ve got. When you think like that, who knows what will happen. Even if you fall, you will come up with a way to get up again and maybe even learn how to fall better next time.