Can Amy Come Out to Play?

hmmm… not so much…

It’s so odd when the earth offers so little stability. Gravity is something that most people appreciate but take for granted. (Unless you are watching Chris Hadfield performing Space Oddity on the International Space Station –not watching it on the space station, watching it on YouTube. ) But for some of us, standing on the ground does not feel grounded. For some of us, the gravitational pull is enemy # 1 and for us just leaving the house can be really frightening. If you’ve never dealt with standing as an extreme-sport you can’t begin to imagine how scary it is. Some people living with MS know what I’m talking about. And just like so many realities of life with Multiple Sclerosis, there’s no way to get it, unless you get it. And I’ve got(ten) it for 26+ years to date. But my hate-full relationship with gravity didn’t start until a few years ago.

Chris Hadfield Space OddityI was commuting to NYU and tripping a lot. It was happening as a result of intermittent foot-drop and I cope(d) by cozying up with my good friend denial for as long as possible, in spite of what retrospectively seems glaringly obvious. Kissing the city sidewalk and the inability to find the horizon line was my repeat nemesis. Since that time, I went on SSDI (disability- I prefer to think of as this-ability) which made it very easy to stay in my pajamas and avoid leaving the house. An emotional stop sign now blocked all exits from my home. Not a warning to proceed with caution or the graphic using wiggly lines that suggest an issue ahead; No, this is a permanent STOP sign tangled-up with the scars on my brain that leaves little room for misinterpretation.

Full stop.

I spend a lot of time thinking about my disinterest in leaving the house. (Granted, I spend a lot of time thinking about what I’m feeling and thinking about why I’m thinking what I think. I’m all meta, all the time.) It makes sense that I’m apprehensive about stepping out the front door. The energy required to consider every single step while I’m trying to make sure that I don’t make the wrong move and end up on the ground, is often more than I can handle.

Over the years I’ve adjusted to the need for assistive devices. I carry a walking stick and at times I wear foot braces. But neither are the vertical guarantee. When I first got them, these “accessories” seemed like superheroes to me. They made me believe that they would stop gravity from its overzealous evil bidding. But it didn’t take long for their kryptonite to be exposed and with it my physical and emotional weaknesses.

• • •

On Monday I went to a meeting to plan the High Holiday Family Service (B’yachad) at a Temple member’s house. It’s one of those evenings that I know if I  get there, I will really enjoy it. This is an incredible group (mostly women… just saying!) and I usually leave with the feeling I am part of something bigger than myself. But in spite of that knowledge, I fought myself all day long. To go or not to go. My everyday question.

Fear is usually greater than the sum of its parts and so I broke it down, planning every literal step of the way. I’d been to this house. I knew the hurdles (steps without a hand-rail, not well lit) and so I set up preventative measures to reduce the risk of falling on my face. But even with these cautionary measures, I was still reluctant to go.

I called an “assistive friend” to give me a ride there and a shoulder to lean-on. As we ascended the stairs, it felt like Masada from the base camp, albeit only three steps. (I should mention here that I climbed Masada twice and even with MS it was less intimidating.) But I made it.  (yay me)

Hard to imagine I climbed Masada twice! 1985 (pre MS) and 2001 (with MS)

Even Masada has a banister! (albeit partial)

Unfortunately a three step descent was not so successful. A combination of unforeseeable circumstances played out and that last step was a doozy. I flailed for what seemed like an eternity and when I finally touched down, I hit the same spot on my knee that had been pre-seasoned by last week’s trip. Every muscle tightened as I recoiled in preparation for the inevitable impact. I was keenly aware that the flailing is more painful than the skinned knee and the feeling of out-of-control continues to sting.  I mean… geez! I pre-planned everything!

Where was I….she says rhetorically to her attention deficit. Oh yeah.

It was suddenly clear. Not because  the fear of leaving my house had been nagging at me for the last couple of years. Nor was it because this fall forced me to acknowledge that the changes (I hate the word “progression”. It makes it all seem predetermined) of my disease are  easily seen. I clearly need to upgrade to “Assistive Device 2.0” and I’m so scared that it’s not compatible with Amy OS8.

So I’ll reboot, throw out my denial- based -preferences and Google a Quad. (Can I still call it a stick? I hate the word cane!) And will just have to see how it goes.

So please ask me to coffee! If I’m brave enough I will meet you with the four-point-stick in hand, and for once be confident that the sound of my current assistive device falling to the ground will not be heard. My 2.0 will be able to stand on its own four feet. And thus, allow me to master my two and hopefully my relationship with gravity will be renewed. (C’mon Amy, give gravity another chance…. you may turn out to be your BFFs yet again.)

6 thoughts on “Can Amy Come Out to Play?

  1. Karla DeVito says:

    Thank you for writing about this Amy!!!!
    Know you are loved by so many!!! Fuck gravity – or embrace it… Love you!!!!!
    xoxoxoxo

  2. I enjoyed this read.. I especially like the photos of what the stairs look like to me, in most homes in NJ. I wish all my household sticks had four feet so they would not tip over with the plan to trip me. Just saying. I do have many 4 legged friends. Hope you get to calling your new guy friend soon. PS I like the way those 4 footers stand up in weird unexpected places looking all possessed like. Too bad you can not whistle and have it come to you where ever you are. ❤

  3. Dave says:

    If you never got out of bed Amy you would not have to worry about falling down!

  4. Lisa says:

    The idea of foot braces sounds lovely. Where do I get those?

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