I always hesitate to write disability posts because they always sound to me like I'm the whiniest whiner in the world. But then I remember how much mail I get in regards to my disability posts thanking me for talking about chronic pain and invisible disabilities, and I remind myself that emoting is not only a valid form of activism, but also my most comfortable mode of expression. So having said all that, I want to talk about something that has become a symbol of my disability for me lately as it progressively gets worse, and that symbol is this pedometer:
The company I work for started giving out pedometers for free last year, with the catch (or "bonus", depending on your point of view) that you sign up for "health" counseling (which really means "weight loss" counseling in this context) where a representative calls you up once every couple of months and asks you about your step-counts and your weight and counsels you on how to raise the one and lower the other.
And it seemed like practically everyone I knew -- including my mother and father, who are both very serious about exercising as much as humanly possible -- signed up for their free pedometers and started talking proudly around the metaphorical water cooler about how many steps they'd racked up that day, and which bathroom-on-the-opposite-side-of-the-building they were now habitually visiting in order to get their steps up and how many times they'd gone up and down the stairs in the stairwell.
I wouldn't have participated in the first place because I have no interest in becoming embroiled in a corporate weight loss program, and am in fact dreading the hypothetical day when it stops being voluntary and starts being mandatory. But all the talk of "steps" eventually solidified a lot of thinking I'd been already doing about somehow quantifying my disability "spoons" in an attempt to conserve them.
I bought my pedometer because there's a correlation between the number of steps I take in a day and how much pain I feel on the next day. And because, though I am having difficulty admitting this to myself, the number of steps I can take without seriously hurting myself is shrinking. I genuinely need to be careful, to check my pedometer at frequent intervals in order to see how much damage has been done already and in order to remind myself to slow down. My disability forces me to budget wisely -- to use good economy with my spoons, and to spend my "steps" as efficiently as possible.
I chose to buy my pedometer from Amazon, rather than accept the "free with a catch" ones being handed out at my company, and then immediately had to grapple with the unforeseen problem of where to wear it. I'd initially planned to wear my pedometer on the outside of my clothes, hooked to my waistband like most of the people around me wear them. What I hadn't expected was that people would see my pedometer there and would assume that I was on a weight loss regimen, and then explicitly interact with me under the assumption that I wanted to maximize my daily steps rather than minimize them.
It wasn't, I think, just because I'm fat, even though that fact does cause a lot of people to assume at first glance that I must be trying to lose weight. But in this case, I really do think that the saturation of my company's weight loss marketing had inextricably linked "pedometer" with "weight loss attempts" in my co-workers' minds. Even my mother -- who knows more about life with my disability than probably anyone else in my facespace -- reacted to the news that I'd bought a pedometer with surprise and pride that I was finally trying to "get my steps up".
I soon found that this incorrect assumption -- that I was trying to "get my steps up" -- is incredibly difficult to correct in peoples' minds. I've had to tell several people, multiple times now, why I wear my pedometer and why my goal is to keep my steps down, not up. People whom I genuinely believe care about me will listen closely, nod their heads, make the appropriate sounds and words ... and then forget all about it the next time I mention my pedometer step-count.
I have learned, like so much having to do with my disability, that my life is easier when I hide these details. The pedometer has been relocated from my jeans waistband to the waistband of my underwear, where I can check it during bathroom breaks. My holy shit, I accidentally walked XXXX steps today and tomorrow will suck revelations are kept to myself, to spare myself the inevitable "congratulations" from people who only ever hear the number of steps and not the surrounding words about how awful and anxious and horrible everything feels to me in those moments. The moments when you know pain is coming and that there's nothing you can do to prevent it are the worst ... and are also the moments I am least able to share with anyone in my facespace.
Logically-speaking, my pedometer saves me from feeling pain. I should like it; I should consider it my technological ally in the battle to preserve my spoons. Without it, I would lose track of myself and I would go too far, hurt myself too badly, end up paralyzing myself for days at a time. These are things that I did with some regularity before I got the pedometer, and they are things that occur much less frequently now that I have it. I should be grateful that this technology exists, and that I can afford it. And I am grateful in a detached way, the kind of gratitude that manifests when the pedometer falls into a (thankfully clean) toilet and you dive for it while praying that the water won't get into something crucial and delicate.
Even so, I hate my pedometer. I hate it with a visceral hatred, the kind of blinding hatred that makes me want to obliterate it with a croquet mallet. I want to grind it into powder and dance the powder into the ground and then build a campfire over the area and roast marshmallows for good measure. I hate looking at it, I hate clipping it on every morning when I dress, I hate the touch of it on my skin, I hate its little blue numbers winking up at me. I hate it because it represents a limit I wish didn't exist, a disability that I would give anything not to have. I hate it because it shows me that the limited sphere of travel I knew vaguely was in place now has hard limits that are themselves starting to shrink. I hate that I can measure that shrinkage and can't simply chalk it up to a string of coincidences or bad memory.
Most of all I hate my pedometer because it reminds me of how deeply the people around me do not understand this aspect of my life, an aspect that touches me intimately every moment of every day, to the point where I can never, even for a moment, forget that I am Disabled. I hate that this technological tool means something so completely opposite to everyone else that uses it, that my use case for it is so deeply foreign that I cannot even explain in a way that others will remember. My pedometer sets me apart, in a way that my cane and my walker and my back brace and all the other paraphernalia of my disability do not: as fundamentally backward from everyone around me. Not just differently-abled but oppositely-abled.
And that is a very lonely place to be sometimes.