The Whole Deck

12/7/2011

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.”

Christmas Letter

Despite whole-hearted attempts to be as cranky as possible about this disease; It has not escaped my attention that, possibly as a result of needing more help than I could have expected my ego to survive, I am surrounded by goodness. A motley assortment of strange angels show up, just when I need them. I am not talking about my friends, here, or family; these assistants are only related by my own good fortune to have made their acquaintance.  There’s the insurance agent, who came out to investigate a flood that I was not insured against, and found something of equal cost for which I was. And the young woman I spoke to before being routed to him, the one who assured my teary and anxious self that she’d get this taken care of; which is where the insurance agent thoughtfully assigned for me, came in.

Maybe floods are good omens for me. My office is separated from my home by a driveway that has always sloped down, at an angry angle towards the threshold of my office door.  When Phoenix last expected a heavy rain, I called the city because I wouldn’t be able to pack and load the sandbags necessary to protect the office myself. The concerned operator on the other end assured me that although she didn’t know of the service of sandbag delivery for the disabled, she’d find someone who did. She routed my call to the fire department, which sent me on to city hall (which was closed, by the way), where I was led to sanitation, until finally I ended up right back on the line with her. Did you find help? She asked optimistically. She sounded very dissatisfied and even offended when I reported the lack of a pre-coordinated city response.  I ended up trying to make her feel better about the situation. A couple of hours later, Sandra came home with plenty of sandbags that she had shoveled herself. No sooner than Sandra arrived, a burly older man showed up in a city truck loaded with sandbags for me. He looked like they pulled him from a log cabin buried in a state park; with an abundant scraggly beard and flannel shirt (just for context- I live in the Sonoran Desert. Nobody wears flannel here.) I let him add a few bags to my tightly packed driveway, just so his trip wasn’t pointless. I had to assure him, not once, but twice,  that we were safe for the storm. I don’t know how to find that initial operator again, to thank her for her compassion, but I know she is out there, doing good things in the world.

It’s kind of like developing MS led me to the outrageous finding out there really is a Santa. He’s for real, but he drops things down the chimney on a different clock; Christmas is whenever you need it. Of course, I am aware that many people would object to the confounding of Santa and God: But isn’t it the same basic idea? This is the God of the New Testament, no doubt. No fire and brimstone, just group hugs and unconditional positive regard.

My mind is chomping on a counter-argument. Who is this person, sitting here writing about the Bible, starting to believe in Santa? But then, I noticed the weight of my child’s face, mashed against my chest, slightly damp from the work of resisting sleep. Her breaths came in warm, soft little puffs across my skin.  Sometimes the world is so beautiful, its impossible not to see the hand of Santa, however I cling to my antipathy.  How did I become surrounded by such goodness, such grace? I’ve lived long enough to be disabused of a belief in personal exceptionalism. If I am offered this life raft, again and again; then there must be numerous life-rafts, just floating around waiting for each of us to notice.

Closer to my own solar system, a network of elves who make magic daily. Even Gus, the practice cat, has a magic workshop. When the bathroom was being reconstructed (thank you again, insurance-elf), all four members of my family had to squish our lives into the front 3 rooms of the house for the demolition of the back.  Make that five, because our big, sweet doofus of a shepherd stayed closely underfoot. There was stuff everywhere, but never the stuff that I needed at the moment. To be sure, the stuff that I needed was always in the last room I looked. Call it my womanly sensibility, a la House of Mirth or The Yellow Wallpaper, but the disarray drove me away from anything remotely resembling sanity. One night, I sat in the driveway crying, unable to enter the chaos inside.

I hobbled out to my safe space, the calm in the storm, my magic patio.  But Gus the practice cat was trapped in the little storage dump we called her home just off the magic patio. I should have been grateful for Sandra’s insistence that he live outside, one less thing to trip on inside. But I was wracked with bad-parenting guilt. Gus, out in the rain; Gus, all alone in the storm. I couldn’t go inside until I righted this terrible wrong. I called my next-door-neighbor, who is in the painting and roofing business.  He came right over and drew up extravagant plans for a cat sanctuary in our former-storage room, complete with custom built shelving for Gus’ food and hygiene needs. The next morning my neighbor demonstrated super-human endurance as he emptied a decade’s worth of junk from the recesses of Gus’ future palace.

The problem turned out to be that Gus too, does not like disarray. For the days she was displaced, we clung to each other in the mist of the clutter and tried to see how it would all come together.  One morning, she didn’t come out of her room so I went hunting for her. She was curled up in my temperature controlled-office on the other side of the storage crisis, with a friend. A small black cat with large yellow eyes peered calmly out at me.  Hello, he seemed to say, Welcome. Gus was happy. The friend was happy. I was flummoxed.  Two cats?? I didn’t even want one.  Two cats, happy to find each other, making a neighborhood in my backyard.

I’ve become accustomed to watching Sesame Street every morning at 8 am (don’t judge me- if you live with a two-year old, you know you watch too. I am convinced that Sesame Street is the Revolution- televised, albeit on Public Broadcasting Station.  A brilliant diversity of creatures creating a Neighborhood; each caring about & contributing to the happy whole. Sesame Street is a subversive portrait of heaven.  My favorite segment of this post-modern utopia is Abby’s Flying Fairy School.  Abby and her gang of misfit peers (one is more monster than fairy, and my favorite one is a skate-boarding pothead ) screw up all of the spells and can never wait for the instructions from their teacher who looks like a mosquito.  Everyone means well, but it takes patience to learn how to use magic. Life is just like that. The longer you sit, the more you keep your hands to yourself and use your indoor voice; the more visible the magic becomes.

Santa, fairies, elves….where was I going with this? Only here: The sacred is everywhere. There are a millions stories and they all boil down to one thing: The world is full of magic, and we bring it to each other. We are the sparkles that glisten in the sky. The chip on my shoulder doesn’t block my view, sometimes it becomes almost weightless. I know you are out there, Santa’s little army, prepped and ready. I get it, this grace. This is how it is all worth it.