i was walking past the fridge the other day, where i have hung a list of questions to ask my neurologist the next time i see her. you know how it is, you think of these questions, and then when you are actually sitting there in her office, you can’t remember any of them. not until you are back in the car, driving home. “oh, yeah, i meant to ask about this.” so, like most of you probably do, i write them down as i think of them, and keep an ongoing list tacked up someplace where i’ll see it often. (unfortunately, that spot for me is the door of the fridge, a place i visit far more frequently than i should.)
but i passed it the other day, and took it down, and read over my scribbled notes, and the thought came to me that, aside from a few sort of housekeeping sort of questions, i really didn’t feel as if i had anything to ask. i felt like i had reached a point not of resignation, but of acceptance. i felt like i no longer looked at multiple sclerosis as something to fight against, but as something to learn to live with. i don’t plan to stop any of the meds i am on right now, or stop my daily exercising; i’m not giving up or giving in. in the back of my mind there still lives the notion that one day i might all of a sudden be able to walk steadily across the living room without a walker, or maybe even go outside and walk in the woods, or – wow – maybe go running. and i’m happy to hear about anything i can do to move in that direction.
here’s what turned my mind to this new way of looking at ms. as some of you may know, the personal activity i’ve engaged in for many years that most feeds my soul is photography. some of you might have seen some of my work posted on my other blog, “captured light.” (which is sort of on hiatus for now.) my photographic practice for the least few years has been to go out into the streets, mostly here in portland, and just photograph whatever caught my eye – details of storefronts, or edges and corners of things, interesting shapes of light. hard to describe – i have always said that if i could write it in words, i wouldn’t need to make the photographs. anyway, the point is that i needed to be out and about, be free to wander wherever my feet and the light took me. it was a joy, more in the taking of the pictures than in the pictures themselves, more in the process than the product.
but, as my mobility took a swift decline – i no longer drive, i can no longer spend much time on my feet – my access to the places i used to photograph and the way i used to use those places disappeared. there are people who have offered to pick me up, drop me off someplace in portland or wherever, leave me there a little while in my wheelchair, and come back to pick me up later. i set up a little studio in my basement, and had a lot of fun with it for a little while. but it wasn’t even close to the same thing. as i write this now, it feels like i am making excuses. but the studio stuff always felt like it was more about the thing being photographed than the photograph itself. the process was more about creating the still like, assembling the thing to photograph, than about discovering interesting light. it was more about creating light than capturing light.
and my desire to be back where i was – wandering the streets, discovering, capturing – but feeling like i was not able to do it, was making me crazy. somehow the need to plan my outings in advance took a lot of the joy out of it. maybe i didn’t (or haven’t yet) tried hard enough. in any case, that is when i started to think in terms of not banging my head against whatever limitations my situation placed before me, but instead to learn how to work with what i had, how to live with those limitations – the limitation of having a much smaller area to photograph in, the limitation of having to both plan in advance when and where i wanted to go, and to rely on the availability of another person to take me there and pick me up. who knows, maybe being forced to work within those limitations would produce a whole different kind of photography for me.
but in the end, what changed in my mind was turning from – or trying to turn from – doing it the way i used to and being frustrated when i couldn’t and trying to learn how to do it a different way. i’m still not sure what that different way will be. (and to be honest, until there is a break in the heat and humidity around here, it’ll have to wait). but a wiser man than me once said, that’s what life is for, finding out.