Saturday, May 2, 2015

The Ghost in the Machine

     It finally happened, and I have to say, I'm kind of surprised it took as long as it did. I mean, my husband looks able-bodied, and I am able-bodied, so when someone sees us getting out of our car, I doubt very seriously they would ever think we have a need to be in the accessible parking spot we just pulled into. Even if they did see the baseball-sized tattoo on his left forearm, I would put money on the fact that more often than not, someone's going to assume we took my grandma's accessible parking permit to use. The truth, though, is more complicated than that, and I wish like hell the woman who was doing her best to kill us with a look when we were walking into the grocery store the other day would have at least made the attempt to contemplate that possibility.

     The thing is, even though my husband was born with Marfan's Syndrome and lives with that debilitating disorder all day, every day, the vast majority of people have no idea he's disabled. (And before you launch an "able-bodied" vs. "disabled" war of words, just stop. It's the term my husband feels best describes him, so that's what I'm going to use.) He works a full time job, and between the small army of specialists, primary caregivers, and the fentanyl patches, he's still pretty mobile. Well, I suppose I would be more accurate in saying that he was still pretty mobile, until this past winter.

     We were at the mall sometime around Christmas, and he discovered, much to his dismay, that he couldn't do more that 75 yards or so at a time without stopping to rest because his ankles simply wouldn't carry him. This was disconcerting, to say the least, because ankles are fairly important in the grand scheme of things. We didn't know what the hell was going on, and frankly,  neither did his pcp, because at this point, his medical care is as a much a guessing game as anything else. So, she referred him over to an orthopaedist for further inspection, where it was discovered that the tendons in his ankles were essentially useless.

     Marfan Syndrome is a disorder of the connective tissue, and that means every single piece of it, anywhere in the body. I know there's so much focus on the aorta and the heart, but that's only ONE of the many systems in the body that's affected. Know what another one is? Musculoskeletal, which includes tendons! Basically, since his body doesn't produce the necessary amounts of fibrillin, the ligaments and joints in his body are falling apart. We knew it would happen eventually, and it seems that that day has come.

     So what do we do now? Well, the ortho said the tendons in his ankles are just hanging there, like old elastic, which is why his feet are so absolutely flat - there's nothing pulling his foot up to create the arch. This also means that the tendons don't do their job in supporting his ankles, and they're kind of just swinging free, taking on all of weight of his body and doing the work to propel him forward with no supporting structures. Neat.

     He's had two rounds of steroid injections directly into the tendon, and that seems to provide some relief, though we're not sure how long that's going to last. Like almost everything else, we're in a holding pattern of let's-wait-and-see-how-this-works. Hence, the reason for the accessible parking tag that we've only recently starting making use of. Makes a little more sense now, yeah?

     My husband has had it for almost three years, technically, because his doctor told him point-blank that he'd better start thinking about doing anything he could to minimize the everyday wear and tear on his body. If that meant twenty less steps to walk to get into the store, then do it. Even after such a straightforward discussion, he and I were both reluctant to use it, each for our own reasons. His, though, was primarily because he was not looking forward to the day when some sanctimonious jackass decided to offer their completely unwanted opinion on his using an accessible parking tag.

     I'm not even going to say "to her credit" when speaking about the woman who clearly thought we were abusing a privilege the other day, because she deserves no credit. None. I will fully admit to having a (possibly unreasonably) long list of pet peeves, but high up on that list? Sanctimonious jackasses. I can't stand people who thoughtlessly make their opinion on a subject known, without knowing the first thing about said subject or the specific situation. It's just rude.

     I know he doesn't look disabled, he knows he doesn't look disabled. Not to the casual observer, anyway. To those who know him? It's obvious that his legs are slightly, unnaturally perma-bent at the knee - because his hamstrings are too short to allow him to fully extend them. It's clear that he's not walking at the same pace as everyone else, because the nightmare that is his spine won't allow him to move very quickly. Why do I never push the cart in the store? Because he needs to lean on it to remain upright for periods of time longer than 20 minutes. If he doesn't have that, or his cane, or something else to help him stand, he has to sit down and take breaks, then continue.

    And so, lady who clearly thought we had no business parking in that accessible spot, you would do well to keep your death-stares to yourself. I wouldn't have called you out on it, and I didn't, because a) I detest those who think it's acceptable cause confrontation over anything, everything, and b) it would have embarrassed my husband terribly, and he's already painfully self-conscious enough most days. Instead, I'll settle for hoping that someday, you can open your pea-brain just enough to allow for the thought that, "Hey, maybe just because I can't see something that screams DISABLED PERSON!!!! about that gentleman, it doesn't mean there's not something going on behind the scenes." 

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