Tuesday, December 27, 2011

The Whole Deck


My Disabled gal-pal and I were laughing about the view from the inside tonight. This friend, who is my only point of reference for People-Like-Me, wants to get the word out about the rare autoimmune disorder she lives with.  She was talking about developing a website where patients and treating physicians could connect, get information, and make a community. It's brilliant, and I'm all in, but that's not why we were laughing. What drove us to hysterics was that a family member who sees this friend once a year said to her after a Christmas gathering, (by way of “good-bye, it was nice to catch up”):  “You sure got dealt a shitty card.” “Maybe not,” she replied.

I’m sure his remark was a heartfelt attempt at empathy.  What do you say to a 40-year old mother of 2 who needs to haul around an oxygen tank and is considering a double lung transplant for lack of better options? Shitty card must seem appropriate, it certainly seems true.

We laughed until she lost her breath and my back seized up. Is this funny to anyone outside of thirty-ish previously non-Disabled women who still kind of fancy themselves hipsters? (A community of 2 so far.)

You know what? I’m not sure that I care how unrelated-able these lives are to others. This is the view from the inside. No one ever thinks they will find themselves here. Over the course of a few years, months or weeks, sometimes in one split second, a carefully crafted identity shatters.  A body unlearns to move, lungs unlearn to breathe, and everything you thought you were has to be reconsidered.

The reconstruction of identity spans the most trivial to the most profound. I wonder a lot how much I care about being attractive anymore. Can a woman on wheels even be attractive? I certainly have let my weight go all to hell; but since I barely move, my body has no opportunity to burn off all of the sugar I eat to comfort myself. Ordinary recommendations for caloric intake are meaningless when exercise consists of once around the house with a cane. I would probably be at a healthier weight if I only consumed wind biscuits and aromatherapy vapors. But then I’d be hungry on top of it all.

Mid-range identity concerns involve parenting, partnering, and use of my mind. Why does my 2-year old run up and ask “Okay?” whenever she hears me bang into something? How will this harm her? Will my 6-year old only remember Mommy being sick during his childhood, or will other memories have more significance? How can I be a full partner to my love, who takes responsibility for what feels like everything when I go down?

Since my body stopped working, my mind is rattling her cage constantly. Because I can still think, but not move much, my mind is in overdrive.  The less I move, the more she rattles. It’s a private little freak show, I only wish it burned up calories! Can somebody get to work on that?

At the highest level of concern are the existential questions. I’ve recently re-established my faith in Santa, but is it enough? I train my mind through meditation; and try to live with compassion, kindness, and mindfulness, but where am I going with it? Does it help? How would I know? What is the damn secret that makes sense of all of this?

Kelly and I have a new project that is going to keep me busy for awhile. Okay, Kelly might not be aware of it yet, but all night while my seizing muscles chased away sleep, I concocted a scheme. I’m working on the name, but so far I’ve come up with: Disabled Babes or Sisters with Wheels (Kelly’s wheels are attached to her oxygen tank instead of her legs, but either way it’s a drag).  Then our motto: Doing It with Disabilities!

Sandra gave me a puzzled look and suggested I call Kelly to hash out these details when I floated the slogan to her last night. Which makes me wonder; have I lost a broader view? Has my perspective gotten so myopic that I mistakenly believe that the view from inside matters to anyone else?

We live in a culture that commodifies every aspect of identity; even illness. LiveStrong! Don't be a victim, be a Survivor! If that's not enough growth through adversity, with a little more work you can move into the Thriver category! This story, of doing something uplifting with your shitty card, feels like a heavy mandate.

What if I'm just too tired? Or can't catch my breath? What if the answer lies in the community of People-Like-Me lamenting their fate? What if I don't choose to do anything positive with this burden at all? Would I also be a failure at looking on the bright side? Along with my failures to hike with my dog, keep my house clean, or roughhouse with my kids? This last line raised some eyebrows from people who have known me a long time. I have never been the roughhousing type- I wouldn’t even know how to do it. But it’d be nice to have the option

Disability needs an overhaul. An image consultant. A few more options than freakishly cheerful or angry and isolated. Freakishly angry? Cheerfully isolated? I'm not feeling it. How about sexy? Fierce? United? No battle analogies here, I don’t want to fight disability or illness. I want to live in peace with it.  I don’t want to be reduced to the one shitty card in my hand. Can’t I be the whole deck of cards, my illness just one of at least 52 aspects of self? Yeah, okay, this one is a shitty card- not much you can do with a three of clubs. But look at the 51 other cards I was dealt! The golden hand. Aces, kings, and queens; hearts and diamonds.

Is there a way to help others see the hearts and diamonds, the royal flush, in addition to the lowly club? Is there a way that I can see them all? Would even the consideration of the idea be a failure of my intentionally bad attitude?

It remains to be seen. But keep an eye out for us. Maybe we’ll be the “Whole Deck.”


  1. Other cards:
    Wicked sense of humor.
    Excellent writer.
    Annoyingly strong student and teacher.
    Great sense of fashion.
    Speaks truth to power (and anyone else).
    Cat lover.
    Deep parent.
    Fun laugh.
    Connected friend.
    Now you fill in a few...

  2. When a sudden shift in health/life upends every bit of an identity, it's tough not to let it become your entire identity. Folks want to limit you to it and sometimes the condition itself forces a myopic focus for a period of time. But it's so little of who we are. It's why Dolores refused to wear pink(amongst other reasons) or participate in a Komen Race for the Cure when going through breast cancer treatment. She didn't care that others did - often in support of her- but she couldn't allow herself to have that as part of her identify.

    Sure we might have been dealt a "shitty card" but it's only one out of so many. Like you, I choose to see the hand in it's entirety. An ace and a queen is blackjack baby and I'm rolling with it!

    We're still here and that's all that matters.

  3. One more thing I've been wanting to say out loud for so long now.... I don't want to be fucking uplifting, I want to be alive!

  4. I want to make my own deck from now on.