Is That Really How I Walk?

A recent wedding anniversary, the launch of a project two years in the making, and a few other milestone events have kept me busy enough the past few weeks and months. Busy to the point where a few days of the anti-fatigue medication I’ve dubbed my “loan shark drug” (due to the fact that I’m simply borrowing from my following days’ energy reserves and will need to pay it back with steep interest) were taken just to get through to the other side.

One of the events, while it was amazing and humbling to be included in it, also caught me up short, as so many aspects of living with multiple sclerosis (MS) can when you see something in a different light … or for the first time at all.

The cinematic debut, and subsequent release on streaming video, of a documentary film called Blow-Ins made me (once again) aware that the way I think I’m living my life and the way others see my reality can be two different things.

But I’ll step back a bit first.

What It’s Like to Catch an Unfiltered Reflection of Ourselves

We all catch a peek of ourselves in the mirror when we don’t expect to (or really stop and look when completing a routine task such as brushing our teeth or shaving). I always look more tired, older, and a good bit grayer than I remember from the last time when I saw myself like that.

I’ve also caught my reflection out of the corner of my eye when walking past a bank of large shop windows. I’m not lying when I say that my reaction has been to keep looking around my reflection to try to see me, because I thought I was looking at another — more disabled — person and not Trevis writ large.

We all do it. We’re often surprised — I usually laugh it off — but sometimes it stings in a way that feels different from the prick nondisabled people experience when they see themselves in those instances.

My Role in the Documentary Film ‘Blow-Ins’

So how did I end up in a documentary?

First, it wasn’t a film about MS or anything even close to it. I happened to be chatting to a man about something a couple of summers ago. I don’t remember where the conversations began, but it got around to the fact that he was producing what had grown from a short piece about someone in our town into a film about people who live here but are from somewhere else.

About 2,500 people live here year-round and a full third of us weren’t born here. By “here” I mean in the town. People from 3 miles on either side of “here” are from “there” — a completely other place.

So about four hours of setup and filming in my house ensued and turned into a few minutes on the big screen.

As the filmmakers were editing together the final product, they needed what is known in the business as “B-roll.” These are the bits of film that relate to what’s being talked about but are not spoken to camera. In this case, they were of me cycling around our town and catching up with a few bits of gossip along the way.

One clip had me walking my bike down the footpath toward the camera.

A Bit of B-Roll Exposed Me to Myself

Like the grocery trolley, my bike can act as a walking assistant that no one knows is being used that way. Well, I thought they wouldn’t know …

Not unlike catching that glance in the mirror or in a shop window, but wholly unlike it as I was 15 feet tall and full-color film is different from a faded reflection. There I was: staggered gait, wobbly, throwing one leg around in front of myself to compensate for weakness and lack of control. I thought I was getting away with a blinder, using my bike like anyone else walking up the footpath.

Truth is, I don’t look normal at all — or at least I don’t look the way I thought I did — even when I’m using my bike as a crutch. I think I’m passing, but I am surely not fooling anyone but myself.

The Truth of MS Is Impossible to Hide

It was a great thrill to be part of this lovely film, which is something of a love letter to the place we call home (and a beautifully filmed one at that). Like much of living with MS, however, the truth of that life was as impossible to hide as those pounds the camera invariably adds to the face.

Wishing you and your family the best of health.



My book Chef Interrupted is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and read more on Life With Multiple Sclerosis.

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