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.

Relentless Drone

Things have been unusually quiet around here. And by here, I mean my head. Since my decision of a few weeks back to put down the world and stop improving, I’ve enjoyed a rare stretch of peace. I didn’t even realize how much my brain chatters at me until it got quiet. The noise, the pressure, the imperatives…gone. The trials, the legal teams, the judgments, the convictions…all gone. It was quiet at last, and I could hear myself living my life, instead of deconstructing it in the relentless monologue.

Ahhh… The good old days. I had a couple of hard falls last week (is that voice the physical therapist who lives in my head, chiding me for no brace, cane, or wheels to keep me safe?) My graduation objective when I last did time in PT was one month without falls. Being younger than 100, I inwardly mocked their low-bar goal. Then it took me a good 8 months to achieve success by staying upright for 30 straight-days.  Initially I eschewed balance exercises (Really? Standing without the wall’s assistance for 30 consecutive seconds was beyond my current scope? Really.)

So I did my time and became wildly successful at not falling down, at least not all the way, at least not without a reason. But the last weeks have been a challenge to my Olympiad identity. As a result of being lazy, or headstrong, or in denial that I was no longer a soccer super-star, I got a little banged up. I am actually a little proud of the bruises and scabs- I feel athletic. But the less fortunate side of any bang-up with MS is nerves that over-react and muscles that forget how to bend. 

I slept badly last night, and woke up aware that I had just spent 7 hours worrying. The content wasn’t retrievable, and wasn’t important. Except that I do remember a dream where I was in what should have been a small car accident only my wheelchair was knocked off the back and killed the woman in the car behind me.  The woman was late 30-ish, driving a mini-van, a busy professional mom type. It was a few hours later that it came to me: A new essay, “The wheelchair that killed me.”  Then idea that what should have been a bump in the road, a small accident, had killed me.  Very obtuse. Sometimes my subconscious thinks she has to spell it out for me.

I woke up with the noisy brain back in charge: Do this, don’t do that, did you follow up on x, have you written the notes for y? Hey Fatty- don’t forget to pay the bills, study Spanish, and exercise. In the next 60 minutes.  I meditated, twice, but my head wouldn’t shut up. I medicated, and the rant was slower but still urgent: Don’t forget to worry about all those things you can’t even remember right now!

Just like that, in the span of 5 to 6 AM, my quiet evaporated. Noisy brain was back, and making up for lost time. So I managed to complete 50% of my morning drill and got to work early, grumpy and exhausted.

Tonight I went out with friends to celebrate Sandra and friendship, and made quite a scene. We had pulled up beside an outdoor seating area at a restaurant, trying to assess how Me-on-Wheels could enter when the friendly staff noticed us and demanded that we come in and join the patio diners. I was willing a sink hole to open up and swallow me into the earth. No, the friendly people said, come in! They started moving tables and chairs, actually unplugged the singer, mid-song, moved the speakers and audio equipment and a heavy potted plant, made a big fuss to be “accessible.” We filed in, performing amazing feats of spatial relations, re-arranged the furniture and settled in. It was a great conversation, yummy food, and when I had to use Sandra as a human cane when I needed to use the restroom, I didn’t really care. It seemed even a little funny,

At one point I was trying to leave the patio and Me-on-Wheels got stuck between a couple falling in love and an exposed pole on the wall.  It was so ludicrous I forgot to be embarrassed. “Hi,” I said, “what are we talking about?” The couple smiled nervously.

“Just kidding. I’m just a little stuck, but I’ve made it through here before. Please don’t let me interrupt your intimate conversation.” We all laughed. It was funny. I was stuck, right on top of, a stranger on a date. We laughed and I eventually made it through. I sat in the parking lot contemplating, its miraculous really, that when you roll through your worst fear, people having to notice me, accommodate me, it’s really just kind of funny.

The others eventually made it out, albeit probably with less dramatic flair, and I thought about the friend we had dinner with. A woman who thinks much like me but has a totally different drone. Her internal monologue is around housekeeping and being at home with her kids. When I was talking about the brief precious time that my inner nag got quiet, my friend looked at me with tentative eyes, and asked “Doesn’t every one have that relentless drone, the conditions that have to be met for worthiness? Doesn’t everyone have it?!”  I completely related, so it was a relief to me too when our three companions each offered that no, they don’t have the relentless drone. It was a revelation verified. Then she told us she might be chucking all of her carefully crafted entrepreneurial plans to become a bikram yoga instructor. She would be gone for 9 weeks and it would empty their savings. By the end of the evening we had gotten to she “would be going away for this training” because she had found her thing, and it wasn’t at all what she expected. She had found her passion, or it has found her, and she’s braving a new path. The way opened. The woo made a path. This was her now.

This is me now. Rolling out to great connections with good friends. Breaking and entering into an intimate moment between strangers, having half a restaurant staff dissemble their patio so that I could join them. Laughing with strangers I’d have been mortified in front of a few short weeks ago. I learned tonight that samsara, our journey, might be a little less suffocating if we stop gagging ourselves with the droning. And mine had some time off tonight. The drone was on a smoke break while the situations that would horrify me kept creeping up and materializing. Me- Now really truly finds the humor.

The drone is quiet tonight. She is surrendering, for now. I know she’s devising ways to infiltrate, and she will. But Me-Now is having a good time, enjoying the silence.

Brains on Fire

My partner came home from a workshop recently and blew my mind. She'd gone to a talk by a very well-respected psychologist give in which she described herself. As me.  Obsessive, anxious, a semi-secret smoker who writes on spirituality and the mind-body connection, who uses her noisy brain as a vehicle to offer her personal struggles transformed into compassion and hope.

Okay... I haven’t actually read her work, but I'm familiar with it.  I'm embarrassed that I haven't gotten around to reading it, because I would count myself as a fan, I have a sense of the depth and importance of what she does. Pause for self-flagellation.

Here's the part freaking me out the most:  She even used my word.  "Snarky." Such a beautifully descriptive word, a word you don't hear so much as feel.  Outside of me working my word into every conversation (it says so many things,) I have never heard it used by another human being.  She probably uses my other word too- swanky. When I swallowed my pride and got a mini-van, I got the swankiest one available.  And I love it. I do. Minivans make everything so convenient.  But I digress.  On this driving epiphany (why didn't I do this sooner?), I have a personalized plate, "SWNKTNK". Swank tank- for those of you like me, who can never figure out what personalized plate is trying to say. Much to my surprise and disappointment, when I went to sign up for "swanky," it was already in use. "Swank" too.  Sometimes I think I should have named her " SNRKKRT"(snark kart, friends), but that was probably also already taken. Who are these people?

But here is this woman I don't even know, describing my narrative.  It's my relentless drone- she has my schtick.  I need to process this so badly that that I'm pecking it out on an I-pad while my new computer is loading something (it's been loading something, and thus unusable, for the two days I've had it. Design flaw? I am open to contact from Apple). I treated myself to this extravagant luxury, a brand new laptop, because I've been playing with the idea of being a writer.  It’s true that I've always written; volumes and volumes.  This is different because I've always written as an exercise in navel-gazing.  For the last few months my writing has felt different.  Like I'm talking to somebody.  Like my words might be valuable to some kindred souls outside my head. Then I learned that my inchoate identity might be already out there, being spoken by a woman far wiser, more grounded, more impressive than me. Who gives a rat's ass what tiny, anonymous me has to say?

I am intentionally writing this down before I go online and find out about her.  I have an irrational fear that our voices could get tangled up, if she's as similar as I hear, from the person who knows me best in the world.  But then I had an moment of relief--even if we do have the same things to say, a shared narrative, I have something that sets me apart (aside from being far poorer, less articulate, and very un-famous.) I have wheels.  My narrative spins around it's own orbit:  the weirdness of how this bodily incarnation turned out. Not happily; with Zen- like detachment.  Not, unfortunately, proudly (clearly I have a few issues about it), but my disability status (belck) has changed the color of everything.  Maybe I still have something unique to offer the world: A brain on fire, a body on wheels, a noisy mind that takes three simultaneous perspectives on every single thought (“patient,” psychologist, and observer of the conflict negotiations between the first two). With the compulsion to write it all down; to try to weave it in to who I think I am in a permanent way, in ink.

I cannot get lost in someone's narrative, as similar as it may be to mine.  The third perspective, the observer, wants to share what she is seeing. This long identity transformation (I like to think of it as my "wheevolution") is mine exclusively. But, maybe there are more of us out there. In bodies that are erratic and misbehaving with minds that are spinning out, trying to make sense of it. Others who love funky words that have fallen out of use. Others who think that any of this makes any difference at all.  There are three authors I read or listen to because I often think when I run into a really meaningful metaphor or description: ME TOO! Somebody else has the same head-cocked, subconscious-on-alert narrative as me. I love these artists and authors because they offer back my own experiences, translated into language that offers a unique perspective on all I cannot say. Were I to share parts of my narrative with Joan Borysenko, hers would still be different. It would be more Joan-Borysenko-on-Wheels. Or just me, waving my lamp in the darkness, wondering if anyone will see it.  Wondering if my lamp exists at all.

Just fine, thanks.

Just Fine

10/15/2011

This morning, I watched the sun rise over the McDowell mountains as I tried to cram a few minutes of meditation in before another long day. I was still planning to get a Spanish lesson in and then get to work before the first meeting despite the fact that I’d only gotten two hours of sleep. I wrote through the night, one of two articles which I had, only hours earlier, committed to write. The relentless drone in my head of the endless list of things to do was intense, but not, unfortunately, unusual. There I am again, my plate so full that savoring anything was out of the question. It was then that I made a radical decision.  Wait for it....

No, it was not a decision to increase my anti-anxiety medication, although that might have merit.  Nor was it a decision to beg Sandra's forgiveness for more projects, more plans (that will come later). Reflecting on the gentle advice of an old friend to practice tenderness towards myself as much as others, I decided to relax.

This radical notion crossed my mind, and then moved in and started unpacking: What if I really am fine, just as I am? What if I ceased my relentless efforts at self- improvement? My nails are chipped and dry, desperately in need of a manicure; eyes bloodshot; 20 extra pounds not well-distributed but all gathered together on what my son fondly calls my "giant belly”; and I am still smoking despite 20 years of quitting.  I am overly enthusiastic and overly involved; there are so many issues about which I care deeply and I often fail to prioritize them well, or to recognize my limits. I can be self-centered, prone to navel-gazing, so absorbed in my own thoughts that I fail to notice my effect on others.  Other times, I disappear so deeply into my mind that I fail to notice  others at all. I can be judgmental and snarky, intellectually arrogant, and intolerant of what I deem unkind, fearful, or just plain stupid. I am disabled, exhausted and in pain most of the time.  But sitting there, watching the mountains absorb the first rays of light, I had the unlikely idea that I might be just fine.

In my defense, I do have a few good qualities; many of which are just a reappraisal of my long list of faults. I am brave and determined and refuse to give up, regardless of how high the stack of odds against me. I am wise in many ways.  I am a gifted empath; I connect deeply with others and intuit more than what they can verbalize at that moment.  I am funny, irreverent, and try to see every situation, no matter how painful, with lightness and perspective.  I am honest, even when I really want to be quiet. I live up to my ideals of integrity, compassion, and kindness. I love my family and friends deeply enough to recognize that whatever modicum of grace I achieve is a reflection of their light. I am the mountain, absorbing their rays.

What would it mean to practice radical self-acceptance?  I could be Atlas, gently setting the world down, walking away.  Is it the lack of sleep? The effects of meditation? Some sort of brief psychotic state? Isn't it irresponsible to stop trying to be better?  Wouldn't I just be lazy? Would I be a useless waste of space, a quitter? Would everything fall apart if I stopped holding it together with my self-criticism, contempt for all of my shortcomings?  Who would I be if I stopped striving to meet my own expectations of who I should be?

To be honest, I have no idea who I’d be if I stopped trying to be perfect.  But it is increasingly clear to me that being perfect, or attempting to be, only moves me further away from myself. The things that I love; sunrises in the desert, the smells of campfire and incense, deep connection with people who rarely choose to connect with others (two of the four friends I love most in the world are on the autistic spectrum- this says much about me but nothing about them), the smell of puppy breath and babies heads; these are not things that have anything to do with how productive I am at work, how clean my house is, or how well I present my façade to the world.  

Six years ago, that I came to a professional event in a powerchair wearing pants with an elastic waistband would have been unthinkable. Two months ago I would have locked myself up rather than allow myself out with raggedy fingernails and eyebrows weeks overdue for waxing.  I usually require myself to sneak around to smoke, it is certainly not the image I want to project to my colleagues. Today I just pull up to an ashtray, light up, and wave to colleagues as they hurry by; the next meeting, the next phone call, whatever it is that they believe they have to do. I have decided that, contrary to contemporary public mores, smoking does not indicate that I am a bad person. Contrary to my personal opinion before today, not being groomed like a showdog is no reason to stay home.

Perfect? No. I am no longer interested. In fact the idea has become distinctly boring. I would rather find out what it is like to be me.  Consider this my official notice:

I am putting the world down.  I am choosing to be free.

It’s sundown now. Behind the mountains the sky is orange, then gold, then an unexpected chartreuse. There are bats, dozens of them. Flying around, as if they are frantic, as if they are looking for something, looking for the light.  I forgot that I am afraid of bats. I learned as a child that if they make contact, I would have to get rabies shots. I learned that they are dangerous; the world is dangerous. I am forgetting everything I learned to be afraid of. Just as my body is unlearning how to move, my mind is unlearning fear.

Late last night, or early this morning, I came out to this same balcony, looking for peace from my relentless thoughts. I rolled out in my chair, equipped with my ubiquitous laptop, a bottle of water, and cigarettes. I expected to be alone, as it was the wee hours when other people presumably sleep. Instead I found a woman crying, proclaiming her love to a man who looked like he himself might be asleep. I’m sure that they expected to be alone too, but I needed to be under the dark canvas of stars, a tiny, insignificant speck in the universe, finding my place. I tried to take an unobtrusive spot in a far corner, where I could write and they could continue whatever drama was unfolding. I wrote, she cried, he tried to stay awake. Then she called her mother:  “I’M ENGAGED!” After a brief conversation, she reported to her sleepy paramour that her mother was very happy for them, that she knew they would have a lifetime of happiness.

A lifetime of happiness. The start of a new dream; statistically unlikely but every one of us believes at some time that we will beat the odds. Weddings make me cry because the hope and faith expressed so ardently, so honestly at the time, is so wildly implausible. I used to joke with an old friend that the only appropriate toast at weddings would be to raise your glass to “As long as it lasts.” With all that we know, all of the gruesome statistics, inevitable disappointments, and profound suffering that life offers down the road, people still turn towards each other and promise to beat the odds. It is the triumph of connection over logic, faith over fear.

There is a Pow-Wow occurring nearby on the reservation. In the distance I hear chanting, rhythmic stomping, clanging bells on the boots of the dancers. An ancient ritual, the embodiment of resilience, from a people who refused to disappear. Manifest destiny. Greed and ignorance besting life as it had been known. Indigenous people, the original nations, herded into camps, wrapping their children in smallpox blankets to ward off the inevitable. The improbability of survival. The will to live, to believe, to overcome. The miracle of survival, the faith that made it possible, and the dancing that continues, in gratitude and celebration. Human beings are wired for surviving the impossible. Dance, pray, live…LIVE.

It’s written in our DNA, the will to keep going when the world itself is no longer recognizable.

Just before the last molecule of light descended behind the mountains, the bats all disappeared. Just like that: They were everywhere, and then they were gone. How do bats know, that it is the very last moment? Where do they go? I guess that is the way it is with all of us. We are here for the sunrise, or the sunset, or the time in between. Then, without warning, a primal instinct kicks in and we disappear; an hour, or a day, sometimes a lifetime. We are here, against every odd, willing ourselves into the unknown.

Who I think I am, my infantile grasping at how I want things to be, it is all so unnecessary, so futile, so strange. I am a star, shooting across the night sky. That I can convince myself otherwise is a peculiar human arrogance. This is my instant on this strange little planet. This is the body I got, the opportunity of many lifetimes. This, right now, is the only “me” that exists. This is my instance; I resolve not to waste one more second on everything that doesn’t matter. Tenderness, acceptance, faith—the only way through, the only true things.

I am putting down the weight of the world now; the weight of all of my expectations, the burden of how I think things should be.  I am choosing freedom.

Perfecto!

Perfecto!

10/13/2011

I have been cranky lately. My body isn’t working, I’m in pain, and I’m spending too much time at my job and too little with my family. Even though I warned my mother not to read my blog because it would be too sad for her, I have found that when I write, somehow the light creeps in. My writing is probably not more than my mother can handle. I am contemplating that perhaps even the darkest parts of this arduous journey in this difficult body are not more than I can handle.  Perhaps.

Being the person that I am, I cannot stop myself from taking more on.  More responsibility, more causes to fight for, more projects, more plans, more, more, more. I understand that I am not unique in this. Many people bite off more than they can chew. The disease of the 21^st century woman with an education, a family, a career (or two) and a sense of obligation to the world. We can do it all (and should)!  I can do it all (and it has to be perfect)!

I am not just a professor, I am also a division chairperson. I am not just a professor and division chairperson, I am also a psychotherapist in private practice. I am not just a professor, chairperson, and psychotherapist, I am a mother of two small children, a devoted partner, a loyal friend, a sister, a daughter. In the midst of all of this, I am ardently studying Spanish to catch up with my almost 2-year old daughter, and feel guilty that I am not also brushing up my French because my son’s new teacher is from Provence and he has the opportunity to learn another language.  My bountiful crops of home-grown, organic produce taunt me from my imagination: A garden Christina? You can’t even manage a garden?

It gets worse. I have joined a health/lifestyle game where I have committed $100 to be obliged to a) exercise daily b) reduce my smoking c) record everything I eat in an online journal d) eat 5 “sanctioned” meals daily, at pre-determined times, and e) communicate daily with the other players.  In this “game” you earn points, and the person with the most points at the end wins $500.  I am an achiever. I am used to being perfect at wherever I direct my substantial will.

This is my third round of the game. In each one, I have lost significant sums of cash and pride but very little weight. But when the next round starts, my frontal lobe shuts down and I convince myself again, that I can be perfect, and take home the prize to prove it. I re-join. I pony up. And I immediately fall behind. It just kills me that I can’t get “perfect” days like the other players, all of whom have left me in the dust. Three times now.  Three times, nowhere near perfect.

Cleaning is one of the areas in which I cannot forgive myself for being less than perfect. Sandra’s birthdays are another. I torture myself with ideas about how to make her birthdays perfect.  I collect gifts for 11 months, so there will be enough, so I will be enough. Sandra has nothing to do with it, it’s about me, and needing her to know, at least for one day each year, that she is perfectly loved.

Today is Sandra’s birthday. Tomorrow I will start the 2 weeks of the year in which her next perfect birthday will not loom over me. Then I will start to plan again. 

I laid out her gifts, bought throughout the year, things that she loved when she saw them wherever they were before they lived in my “birthday box.” I laid out our fiesta plates, pulled out the birthday hats, tried to make the kitchen perfect. Our housekeeper and her sister, Luciana’s nanny, arrived early, to make chilequiles and a big cake of flan. These women, and their daughters, have become family to us.  The kitchen filled with people, laughter, conversations in Spanish that only Luciana really understood, incredible food, and delicious smells. Luciana was on fire, she so loves to entertain her second family with sheer adorable-ness. Rudy was so excited about his favorite mom’s birthday that he popped her balloon and hid under the table for most of the morning. The family we always wanted. Right here, in our kitchen, on the perfect day.

Hilda and I went to work creating space in the bedroom; creating peace.  We cleaned and put away EVERYTHING, just as Sandra likes it.  We talked of God, Christianity (hers), Buddhism (mine), and love and acceptance (both).  When my body gives out, I come back to writing. Rested, I go back to creating peace for Sandra.

I am reminded that everything is already perfect. Wobbly legs, clutter, extra weight that is not going anywhere, spinal lesions, aging bodies, children who pop the decorations…All perfect.

And then this, in my email inbox, my weekly thought from Buddhist nun Pema Chodron:

Perfect, with room for improvement

Zen Master Suzuki Roshi once looked out at his students and said, “All of you are perfect just as you are and you could use a little improvement.” That’s how it is. You don’t start from the view of “I’m fundamentally messed up and I’m bad, therefore I have to get myself into shape.” Rather, the basic situation is good, it’s sound and healthy and noble, and there’s work that we need to do, because we have ancient habits which we’ve been strengthening for a long time, and it’s going to take a while to unwind them.

Perfect.

Laughing with the Woo

Laughing with the Woo

10/11/2011

I have quite a few friends who have deep beliefs in metaphysics, new-agey spirituality. Quite a few. I am married to one.  I am a resister. Not because I don’t believe, and certainly not because I haven’t had many experiences that validate aspects of their belief systems. It is not the concepts that make me want to run screaming from the room, it is the language.

Being a person who loves words, I often run headlong into the limits of language.  Angels, archangels, evil spirits, lost souls, spirit-guides, God…. I’m totally cool with however other people want to express their experiences; but when they apply their language to my experiences, I have to stifle a reflexive gag.  My mother has observed numerous times (out loud) that I have a compulsive need to rebel. This, indeed, is true.  But truth is always bigger than language, and we only move further away from truth by trying to fit it into our words.

I have been to many healers. Miscarriages, pain, chronic illness: These things send even the most cynical to whomever markets a hope of doing something about the things for which nothing can be done. Many of these healers have been genuinely gifted. I have experienced healing on many levels in my work with them. I am moved and grateful and awed. Until they speak.  I have to close my ears so the experience is not limited, confused, and trivialized by the words that others choose to imprison experience.

Being a person trained as a scientist, I equally often run headlong into things that cannot exist, because they cannot be measured, quantified, or reliably reproduced.  Admittedly also a little on the snarky side, I have come to call these ephemeral experiences and beliefs the “Woo.” I’m not denying the existence of the Woo; in fact, I am participating. This is how I participate. By making up language to describe without limiting, without a grave tone of self-righteousness. The Woo has my edges; not mocking, but laughing. Not laughing at, but with, the Woo.

The Woo has caught on. It lends itself to great little jokes.  “Woo-hoo” I respond in texts when a friend tells me about a sign, a happening, an experience of healing or enlightenment.  “Boo-woo:” I am sad, life is not conforming to my expectations.

Recently, I am boo-wooing considerably. I have discovered that a person I was very close to was using the Woo for his own gain, at the expense of those who trusted and loved him.  BF, who was equally violated by said individual, and only recently coming to believe that there are forces that move us far beyond what we can explain, cried out with indignation and earnest anguish; “He’s misusing the Woo!” Her vulnerable, newborn faith was being violated, and it was a total outrage.

We feel “woobused.” We accuse him of being a “woobuser.” It makes our disbelief, hurt, and anger more palatable.  Early on in the discovery of his betrayals, when he was still invoking the Woo to get us to buy in to his schemes, I texted BF with this thought: “The Woo cannot save you from your own free will.”

As with all situations that reveal their true nature, each layer of illusion peeled away and the next was darker and more hurtful. Just yesterday the cracks in the illusion of my relationship with him broke wide open. I was confused, terrified, filled with self-doubt. How could this be true? There must be another way to interpret this information.  Am I losing my mind?

So I meditated. A lot. At the end of it, I felt calm. I breathed in acceptance and breathed out judgment. In- compassion; out- anger. In and out. In and out. I found a quiet place in my soul and went to sleep. I dreamt in symbols: Self-protection, strength, integrity.  I woke up and meditated some more.  Compassion. Non-judgment. Detachment.  All the while I felt like there was something, someone, trying to get through. Finally I said to the Woo, I don’t believe in you (a Master Woo, if you will), and your message is not clear. If you want to tell me something, it’s gonna have to be a lot bigger than this.

Not one hour later, we were going through our daily morning chaos. “Rudy, where are your shoes? Has anyone gotten the baby up? What do you want for breakfast? Where the hell is my brace?”  Rudy, my little sage, says quietly, “there’s smoke in the baby’s room.” I glance over and, not seeing or smelling anything, bark back: “Have you found your shoes? Get out of there and get your socks and shoes! You are probably smelling my incense.”

“Mommy,” he insists, there is smoke.” I go to investigate. The room is filled with what looks like smoke, and it is now billowing into the kitchen. Sandra grabs the baby while I call 9-1-1.  “My house is filled with smoke, but the smoke alarms are not going off, and it doesn’t smell like smoke,” I frantically convey to the operator, feeling like a lunatic. “Get out of the house,” she responds calmly, “we’ll be there in one minute.”  No sooner than I had gotten the dog in the van, the kids outside and away from the house, and Sandra had pulled the cars out of the driveway, a fire engine came screaming down our street. Then another. And another. Six total. Six fire engines with lights blazing. A veritable army of fire-fighters, with masks and hatchets and very tall ladders charged into, on top of, and surrounded the house.  Front porches filled with curious neighbors. I do the same. It’s the 2011 equivalent of a block party.

“Did you turn on the furnace?” It’s still 90 degrees! “What about the swamp coolers?” Haven’t used them in years- they are no match for the hottest summer on record, in the hottest city on earth. “Can we access the attic or will we have to go through the roof?” Uh-oh.  

“Ummm,” I manage to squeak out, eyeing the fire fighter on the roof with the giant hatchet, “there are inside access areas, but we had insulation blown in and I understand they are impassable.”  “Not a problem,” a very large fire fighter says, “Where?” I show him the biggest of two tiny openings in the ceiling. He hoists himself in, tearing hundreds of dollars of insulation out and dumping it through the hole behind him. Not that I care at the moment, I am so profoundly grateful that we have an army of help.  He combs the attic: Nothing. They check every outlet: Nothing. All the breakers: Nothing. They investigate every single inch: Nothing. No fire, nothing smoldering, nothing to be afraid of. I am quaking, inside and out.

“Am I crazy?” I asked. “Did you see the smoke?” Yes, when they came in the house, it had appeared full of smoke. It was difficult to see through. But the “smoke” was gone now. They had never seen anything like it. A 3-alarm fire with no alarm, and no fire.

No fire? I smell smoke now.  “That’s us,” a fire-fighter replies. “We like the smell. It stays in our clothes. Most people don’t.”  I too, like the smell of fire. It’s comforting. Just like this mass of heavily uniformed people moving through my house, making sure we are safe. The only woman in the group asks if we have a vacuum, because they’ve made a mess in the room with the attic door. I’ll be damned if I’m going to let the one woman in this heroic gang clean up after them. “It’s in the laundry room, but please don’t....” Before I can save her, she yells to a colleague, “it’s in the laundry room, clean it up.” I might be in love.

While he cleans, I hang out with 6 guys just standing around in my living room, remarking on how much they like the house. We talk about its generous size and small footprint, the original house and the seamless addition. The architecture and the arched doorway. I am definitely in love. With all of them; brave, selfless, smoky and neat. With my house, not burned to the ground. With my family, all safe and returning to life as we know it.  And yes, with the Woo, who managed to get my attention.

Point taken Woo: Things are not as they seem. Just because you think you know something (like fire creates smoke, for instance), doesn’t make it reality. We are really in no position to judge anything: Frail, limited little creatures spinning on a disintegrating planet in an expanding universe. “Reality” is merely our arrogant interpretations of our limited scopes of knowledge.  

Our wounds are of our own making. We made up a story and somebody else changed the storyline. People are not who they seem. We are not whom we seem. All of it- an illusion, all of it a story. Sitting on the patio when everyone was gone, I saw, as if for the first time, my laughing Buddha watching me from across the pool. Laughing so hard his whole body jiggled. I finally got it, why Buddha laughs. This is funny.  We are hilarious. This world- our theatre, these humans- the stars of our own shows, the dramas we co-create and believe in fervently.

Nothing, nothing, is true. Reality changes when we change our minds. Friend, foe, total stranger- how many interpretations do we cycle through, believing in each one with full conviction? The Woo got me this time, a sign so big that it drew a literal crowd.  Woo- 1; Christina- 0. I lay down my arms. Actually, I was laughing so hard that I dropped them. The Woo wins again.

Mile High Club

Mile High Club/ Boot Camp for Gimps

09/30/2011

Yesterday I got on an airplane. This might seem newsworthy if, for instance, I have a phobia of flying, or if I had never flown before.  Neither of these scenarios is true.  Flight phobias confuse me.  First of all, the chances of a plane crash are impossibly small.  It is more risky to walk out of your front door (in my neighborhood anyway.) Secondly, as the daughter of a Belgian immigrant, I have been flying for as long as I can remember.  I was flying even back in the days when, much to my adolescent delight, one could smoke cigarettes on the long flight from Washington D.C. to Brussels.  In addition, death by plane crash has always seemed to me a far more appealing alternative than a long, slow demise by disease that robs you of life slowly, one excruciating day at a time. I flew from D.C. to Phoenix days after the attacks of 9/11/2001- without fear. I've always been a good flyer, and have reveled in coast-to-coast flights that allow me a few sacred hours to catch up on celebrity gossip, sleep, and be catered to with junk-food snacks and bad coffee between naps.

I haven't flown for years now, because I have been too uncertain that my body would be able.  The idea of being pushed around in a wheelchair by an underpaid stranger; negotiating security when taking off or putting on my own shoes can be literally impossible at the times when my left foot acts and feels like a floppy brick; and hauling luggage around when the weight of my own body exhausts me, it all just seemed like too much to manage.  A friend of mine, a retired flight attendant, travel aficionado, and person with advanced MS, told me that he believed he had one last international flight left in him. At least twenty years younger than him and less disabled, I was awed and humbled by his faith in his ability to travel, at least one more time.  My dreams of traveling to Costa Rica, Italy, and Peru had been long dismissed, collateral damage but seemingly less important than the day-to- day to losses. Even flying domestically, to visit family within a few hours by plane, seemed out of reach. I didn't want to verify one more thing I could no longer do. I voluntarily gave up air travel rather than face my unbearable fear that if I tried to fly, I would learn that I could no longer move freely throughout the world.

So why did I get on a plane yesterday, to visit my sister in Indiana?  There are so many levels of reasons that I can't even begin.  How I got on the plane, and ended up here, sitting in my sister's guest room, overwhelmed with gratitude and hope, is more important.  It started with me sitting on the kitchen floor, unable to shove floppy brick foot into my sneaker, and crying because I was terrified and homesick already.  My son gathered everyone into a "hug sandwich" for me, and then raced off to draw a family portrait to comfort me on my trip.  Sandra wrestled the floppy brick into my shoe, produced a box of tissues, and marched me to the car.  "You can do it," she insisted.  "What if I can't? What if there is no one to push me to the gate? What if I can't stop kicking the seat in front of me when my leg spasms start? What if I am unable to move when it is time to disembark?" What if my last shred of independence is demonstrated to be irrevocably lost and my world shrinks down to the size of our living room?

She pulled up to curbside check-in and started unloading my bags to the curb.  WTF?? Curb-side check-in? What is this, boot camp for gimps? I was a terrified child and she was dropping me off on the side of the street?  "Tough love," she stated, as she kissed me and got back in the car. "You can do this.  Buh-bye!"

Shell-shocked, I managed to pull my jaw off of the floor, wipe my nose with the full-size tissue box she'd cleverly placed at the top of my carry-on, and get my attitude on.  "F- that, I better figure out how to get on that damn plane because apparently I'm on my own here." She's an evil genius, that Sandra, because she knows that if my righteous determination kicks in, my fear will get its ass kicked.  Deep breath.  No room for self-doubt.  Sandra laid down the gauntlet and I would prevail.  Show time.

Made it past security with an intimate caress by the TSA employee assigned especially for me; paid $50 for magazines, candy, and a bottle of water; fastened my seat belt and woke up in Indiana. HAH. I made it.  Nothing tragic, humiliating, or even vaguely unpleasant occurred (unless you consider 50 bucks for essentially nothing unpleasant, but in relative terms, who cares?). I made it.  I can travel. I did travel. By myself. I am still a grown- up, with the ability to go where I want to go. It felt like enlightenment.  An enormous burden lifted.  Light into darkness. Grace.

It's autumn here, in the middle of the country.  I've sent pictures home to prove it.  When I left Phoenix, it was 105 degrees (late September folks, for those of you who think the warmth sounds delightful).  My kids have never seen the brilliant palette of autumn. I love the Fall.  It's my favorite season.  The air smells of discovery; that the world is transforming daily is impossible to ignore. The Earth feels like an adolescent, bursting with energy and big, implausible, hopelessly romantic ideas.

Fall partly demands our sharp attention so adamantly because it does not last very long.    Summer days go on without end, and it is difficult to believe you will ever see those precocious little crocuses peek out when the streets have been lined with grimy snow for months.  But autumn; blink and it's gone.  One happy day you point out the first red leaf, but don't get distracted, because the next time you look the trees are bare and the leaves crumble to brown dust in your wake. No where is this more true than Phoenix, where I have planted no fewer than 3 giant trees that promise to accept 80-90 degrees as appropriate evolution weather. Somewhere in November, I shout to the kids-  "Look guys, the leaves are changing color!" Out of kindness, they give a perfunctory glance upwards.  "Yep," says Rudy, "it's almost my birthday.  Now about that cat...."

I love autumn because it stands tribute to impermanence.  Autumn spreads her peacock tail and dazzled us, then slips out the back while Winter charges in uninvited and announces himself. 

This Fall in particular is special because my sister, who hates change and has invested tremendous parts of herself to turn a boring old suburban house into a stunning garden and birding venue, will be moving.  Her new home is a funky old thing, in a funky-fabulous neighborhood in the heart of town, between the beautiful IU campus and the shockingly fabulous downtown boutiques. I, who adore funky, idiosyncratic, historic old homes, think her new place is dreamy. It is a challenge and a promise I'd pursue in a heartbeat.  But I've always been a little on the impulsive side, and my sis is a planner. But who can plan for love? A person, a place, a house, something that moves you- these things cannot be conveniently scheduled, and if they were they would lose their fairy dust.  Love, like all the important experiences of being human, happens to us and we adapt.  We are often surprised at how little resistance there is, once we agree to evolve. People, places, events...We have no control, and that is why they move us so deeply.  We are forced to face impermanence, regardless of our 'plans.' We are stimulated and terrified, soothed and released from the structures we construct and then rail against.  We are free. How scary, and exhilarating our freedom tastes.  Where do we go, what do we need to know, who is going to guide us?

"Life is a classroom.  We are both student and teacher. Each day is a test. And each day we receive a passing or failing grade in one particular subject: Grace."

When I first read this (on a bottle of body wash, I swear- inspiration is so random,) I balked.  I reflected on what I believe are the daily tests: Integrity, truthfulness, compassion.  Then I thought about Sandra, dropping me off at the curb, trusting where I felt only doubt.  And me, summoning the will to move through my fear, accepting uncertainty and pushing forward anyway, come what may.  My sister, leaving the comfort of home to create more space for time's inevitable march. The leaves crunching under my feet, the trees naked with the promise of another Spring. 

Grace is neither a gift nor a quality.  It is neither the moment when our boundaries disappear, nor the countless moments that we long to be better than we are. Grace is available in every single moment, the abundance that exists even when we fail to notice.  Grace is the proverbially water and we are the fish, so immersed that we think it is something that must be found. Hunger and satiety.  Diagnosis and cure.  Everything lost and the light that illuminates the empty spaces. The only test that ever really matters:  Did you recognize Grace in her many guises? Did you embrace it, learn it, share it? Did you reach into the dark and foreboding spaces and emerge, hands dripping with light?

Dunia's Ghost

“Those who don’t learn from history are doomed to repeat it.”

It was a few short weeks ago that I made the decision to put my thoughts on-line, for anyone else who might be struggling with similar things. Or maybe just for me—it’s still unclear. A few short weeks ago that I collapsed sobbing on the living room floor, because my body refused to allow me to clean to the degree I feel is necessary. Three, maybe four Sundays later, and I’m at it again.  Wiping down shelves, reorganizing books, trying to vacuum the couch…. My body gave out, predictably this time, and I collapsed on the floor. Also predictable.

This time though, I called for my co-parent genius and thought it was time to pay tribute to the Goddess of Clean: The phantom who lives in my head, points out spots on the walls that need to be scrubbed, and encourages me to try to vacuum the air vents way out of reach.  Ahh, you think, putting the pieces together:  Obsessive Compulsive Disorder. Well, okay, maybe a little, but the phantom is real. Her name is Dunia. She used to visit my house and make everything right with the world. Until the world went so wrong that she couldn’t come anymore.

Dunia is a woman from a Latin-American country who used to clean the house of a friend of mine who has serious cleaning OCD. Never a speck of dust, never a stray leaf, not one little hair from either of his two cats, on this man’s outside patio. His pool always looks like a commercial for chlorine. His world, the parts of his world under his control anyway, is spotless. When he said he had a housekeeper who was great, I had to meet this unlikely force of nature.  My friend said he’d try to pull some strings. Dunia lived quite a ways from me, and she doesn’t clean for just anybody. She interviews you, in your home, before she decides to spread her fairy-dust your way (and immediately vacuum it up). My friend wasn’t sure I’d get in with her, but seeing as I was disabled, and had recently adopted a baby from another Latin American country plagued with the same poverty, violence and hopelessness from whence Dunia came, he’d put a word in for me. 

I was nervous about my interview. A big, fuzzy dog, and a little stinky baby don’t make the impression I’d hoped for.  But I’d done my best to prepare and now was my chance. Dunia came in with her 8-year old daughter; a sweet, quiet girl with big eyes and dreams of becoming a veterinarian. The little girl took my son and my dog off on an adventure to a different room while Dunia and I talked. Dunia had 3 children, ages 8 to 14. The kids had grown up in the U.S., were in school in Arizona and Dunia ran a very tight ship: No cell phones, exemplary grades, and behavior both kinder and more helpful than any other children I knew was required. In exchange, her kids earned free time; the unstructured time in which so many kids of our culture are drowning. Dunia had high expectations for herself and everyone else. Work hard, aim for perfection, but remember that kindness trumps all.

I was starry-eyed with admiration, which only grew bigger as the months passed and she cleaned places in my house that even my mind could not have conjured up. What that woman could do in six hours to a very busy household was nothing short of miraculous. In addition, during one of my son’s first colds, I was clearly overwrought and inept, so Dunia took the baby from me, produced one of those nose-sucky-syringes, and expertly removed the breathing obstructions from his sinuses that I had no idea how to treat.   It would barely be an exaggeration to say that the exhausted baby and his novice mother were both asleep within 5 minutes of her expert intervention.

Is memory rosier now, in light of what happened? Was she really the Mary Poppins that I recall? Memory is notoriously unreliable; what happens next inevitably changes the story of what happened then. 

What happened then is that Arizona passed laws that would have made Hitler giddy. Laws that made undocumented immigrants and their American children targets in a violent game where dehumanization became our highest moral stance. In advance of the laws by a couple of weeks, Dunia told me that she was taking her family to visit her mother, by car, in a country that now held more promise for her children than the United States.  She didn’t verbalize the last part; she didn’t have to.  A six-week vacation into the heart of drug-cartels and ubiquitous violence, with her precious children and everything she’d earned in tow.  I’d already witnessed the neighborhood children in their Catholic school uniforms pile into vans bound for Mexico with their suitcases, their dolls, and a battered adult herding the masses, usually before dawn.  Everyone was on the run. I started carrying my brown-skinned baby’s U.S. citizenship papers with us in the car.

I cried relentlessly during those months. Sandra and our friends who’d found Dunia and shared her maintained that she would be back, that she really was on vacation. I wasn’t crying because of the inevitable demise of my house, although sometimes I do now. I cried because I’d never met someone who worked harder, who had more integrity, or who raised their children with such principled discipline and warmth, who offered so much to the world.  I cried because wickedness was winning, and I was powerless to stop it; to protect innocent people being attacked in my country, my neighborhood, my home. 

Dunia never came back.  Her phone was disconnected and that was the end of the story. On Sundays, when I exhaust my body and my mind trying to eradicate the inevitable dust from the corners of my living room, I still cry for Dunia. Only now I also recognize that I am crying for myself. A home that will never be as clean as I want it, a body that will never be as able as I’d imagined, a life that is difficult and the will to keep going.  Dunia’s ghost lives in my head, urges me to keep going beyond all reason, one more spot to scrub, one more mountain to move. Keep going, she whispers, just keep going.

Peace Out To Wobble World

I have this friend with a terrible illness. Hah, that’s the same schtick my friends use. I, too, have a friend with a terrible illness. This friend has a rare autoimmune disease that attacks and destroys her lungs. It is so rare that it is classified by NIH under “rare conditions” and receives no research funding, no giant fund-raising walks, not even a colored ribbon (I wish they hadn’t picked orange for MS but at least we have one.) For the icing on this cake, her disease is called ASS.  I swear. Anti-Syntheses Syndrome. ASS.

In the beginning, at the tender age of 38, she was very close to death.  A team of specialists with no experience in treating ASS fought it back, but it’s been a daily struggle since then to gain a small amount of lung functioning back and to maintain it. She carts around an oxygen tank, a paper face mask, and a body constantly pumped up with prednisone and other only marginally effective medications with major side effects.  She has two children, only slightly older than my own, and a much more tenuous income.  When my partner and I are feeling sorry for ourselves and need what psychologists politely call a “down-ward social comparison,” we remind each other that at least I don’t have ASS. It could be worse.

When Sandra went out to visit her last year, our friend revealed that, to my absolute shock, when she is feeling sorry for herself, she and her partner say to each other “At least you don’t have MS. It could be worse.” I am the down-ward social comparison for my down-ward social comparison!  It’s so absurdly perfect; perfectly absurd. She sends out these long emails describing her struggles, her triumphs, the physical ups and downs, recent medical procedures and problems, terrifying prognoses, her hopes for her children, and the joys of her dog obsessing over the hose.  Her emails go to nearly 100 people. She has the single most impressive support system I have ever seen and her words inspire gratitude and perspective in so many. So I was surprised to hear that she thought it was so “brave” that I was starting a blog.  Brave! It’s not even my real name. For the most part, I write in the 4^th dimension; where nobody knows me or has to make sense of the incongruity between the person I present and the person I am.

A few years back, when I finally started to use a scooter to get around campus, I made up a game to torture my friends.  Okay, it wasn’t really a game, and my intention was not really to torture them. It was merely a situation that I concocted to defend the last vestiges of my shredded dignity and sense of independence while my entire professional world was introduced to Me-On-Wheels.  Me-On-Wheels was terrified, humiliated, ashamed, embarrassed, and ironically, still way too proud to ask for or receive help.  Sandra and I made a reconnaissance mission the weekend before school started to see how I’d fit into the elevator, open the doors, get into and out of my classroom.  Aside from slamming into the back wall of the elevator (twice), getting stuck multiple times (jammed into numerous doorways), having to use a three-point-turn to pull open doors, and leaving long, dark scrapes in the wall paint wherever I tried to pull in gracefully, it went okay. So well, that it wasn’t until I was home and alone that I wept like a baby about how I couldn’t possibly go back there like this.

But a girl’s gotta work. So Monday morning, I enlisted my ever-faithful best friend (and colleague, by some major force of grace in the universe) to accompany me (On-Wheels) to campus. I struggled in the parking lot, the impossible heat of August in Arizona firing off of the pavement like an IED, to put all of the pieces of the Go-Go together. I am not making this up: Me-On-Wheels started with a contraption called, get this, the Pride Go-Go. I pictured myself in white patent leather go-go boots and a giant gay-pride flag whipping through the breeze behind me as I sped around the new world. The world on wheels. 

My friend was patient and understanding while we stood there in approximately 120 degrees for the hour it took for me to put the Go-Go together with wobbly legs, an arm not getting any direction from my brain that was desperately trying to send signals through frayed neurons, and a rapidly melting vest of ice that my friend didn’t even have the luxury of  “wearing” (I believe the vest wears me, rather than the other way around, but that is a story for a different day). She pleaded with me to let her help; again and again she offered assistance in my comically visible need. No, she could not help me. No, I knew how to do this. No, I need to be able to put this together myself.  No, No, No.

Drenched in sweat and resignation, we made it to the elevator. SLAM. That’s me hitting the wall again. “OUCH!” That’s me running over a student’s foot.  ZOOM. That’s me scooting to my office at top speeds of 4 MPH to avoid being seen by anyone else I work with who will have to offer sympathetic looks, polite questions, or even just witness me in my debilitated state. I don’t have to tell you what the walls looked like.  Suffice it to say that the best facilities folks in the world (and I swear we have them) are no match for Me-On-Wheels.

I hid in my office for a few days, only venturing out to use the bathroom while everyone else was in class.   My friends finally had enough of my juvenile self-exile and came to get me to go for coffee with them across campus like we used to do daily (a sojourn I had refused since my wheel-evolution).  Their kindness and love finally broke me down (that, and a desperate need for coffee, which they were no longer willing to deliver when I was sitting in my office, door closed, staring blankly at the computer screen again). This was tough love time. 

I agreed with trepidation, under the conditions that they would let me do everything myself.  I have to learn, I pleaded. So off we go, the three of us, just like old times. Except that I had to go first to push the heavy door open out of the office suite. I pushed, and it pushed back. Pushed again, was rolled backwards again. “Just let me help you,” Friend 1 or Friend 2 suggested. No. I pushed with all my might and the door opened just enough to scoot halfway through and then close before I was safely through the threshold.  The friends watched in horror as the heavy door came to rest, Me-On-Wheels stuck half-way out.  A student on the other side of the office suite rushed to hold the door open so I could complete my glamorous exit.  He scowled at the two women behind me with contempt for their lack of consideration.  We laughed about how they were perceived by on-lookers, and I made them re-affirm their vows of non-assistance.  You want tough love? I’ll match it and raise the stakes.

I’m sure I don’t need to go on about the many specific ways that same scenario played out over and over again, on that trip and many others to follow.  Dropped my wallet? Spilled hot coffee? Didn’t have enough space in my little Go-Go basket for all that I bought? Don’t help me! Not if you care about me. But the strangers who inevitably race to my assistance after witnessing the apparent apathy of whomever my unfortunate companion happens to be? I let them help because I am so embarrassed that anyone should witness me being right there, disabled and in need of help, that I don’t have the pride left to send them away. Pride a-go-gone.

That is the truest the measure love. Don’t help so I can retain an illusion of self-sufficiency. The people who love me are forced to tolerate the judgment of strangers so that I can pretend I don’t need help. I like to think of it as a public service. All these kind strangers can walk away feeling pleased that they helped a disabled woman in distress.  I’m a one-stop-karma-shop.  Friend 1 likes to tell the story describing me as a beetle turned on my back in the middle of campus, legs and arms flailing around, unable to right myself, while she stands nearby and sips coffee.  She’s not far off.  I’m sympathetic, I am. She definitely looks like an asshole, standing there not helping while I visibly struggle.  I am so grateful to her, and to everyone I have put through the same scenario, or similar ones, because of the sheer magnitude of my constant adjustments.

In any case, this is not really an essay about torturing my friends, although I thought it might be appreciated as background information. It’s really an essay about being saved by friends, as much as I might protest. 

Recently, I joined aforementioned Friend 1 (let’s just call her “BF” for simplicity’s sake) and her 7-year old daughter on an all day play extravaganza at another friend’s home. I had my two little maniacs in tow, and a very affable partner, lured by the promise of all-day mimosas, good cigars, and a favorable ratio of 5 adults to 6 children.  BF and her daughter had been going over for all-day Saturday play dates since her recent divorce, and had enticed me with the resort style atmosphere and the hilarity that inevitably ensues when the three of us get together to do anything (BF, myself, and L).  

I didn’t jump immediately on board, because I am tired on Saturdays (make that Saturdays through Fridays) and getting the whole troop out for an extended play date exhausted me with just the thought. But this had potential, and my kids get tired of playing “wrap mommy like a mummy” so I can play dead and just lay there. A home full of new toys and old friends seemed like a good alternative. We made it, 4 hours late, aching and exhausted, but that didn’t distinguish it from any other play date on any other day.  Here’s what distinguished it- I felt safe. 

We had two adults with the kids inside at all times, while various combinations of the remaining adults sat poolside drinking mimosas. I thought the two adult rule was for me, as I could do little more than lay on the couch counting heads. When a head wandered off, I shouted, “Where’s X?” and the second adult would give me a status report. Then a relief parent would appear, and I could hobble outside to play with the adults.

When the kids went into the pool, there were 10 eyes on them, and 8 working legs.  My daughter is the only one who is not a swimmer yet, and the anxiety of watching her, on the top step, floaties attached to both chubby arms while BF stood thigh deep, soaking her own shorts to be near the baby, was too much for me.  Sandra was chasing Rudy in a little car he was actually driving (this house is amazing!) So I hobbled over, fully dressed, and joined BF on the steps. But I stumbled, as always when trying to descend, and fell halfway into the water. “What the hell, I’m already wet” I thought in my mimosa soaked brain. So I just got in to guard the baby.  But BF knows that I am even less stable in water than on land and didn’t go anywhere; despite her wet shorts, a daughter wanting her exclusive attention, and the apparent option of getting out. She understood without me having to say anything at all and stayed with us, keeping us both safe from the unknown.

Later, different adults put my children into and out of swings, on to and off of the trampoline, gave them snacks when they needed them and space when they wanted it.  I could sit on my thrones (a pool chair and the couch, depending on my “job-site” at the time), and feel useful.  L’s husband continually moved my cane to my current location.  The kids were safe and happy. I was safe and happy. It felt entirely novel.

I hadn’t realized how infrequently I had felt safe when I contemplated having to do all the things that other parents do on play dates. It was as if I was normal on that magic afternoon.  Just part of the tribe, keeping a watchful eye on the kids while reveling in the liberties of adulthood.  We ate, we drank, we laughed, and we played.  I’m pretty sure the kids did too. Despite pain, fatigue, uncertainty, and all the things that were not working in my body at the moment, despite my hesitation to go or be anywhere where I might  not have all of the same capabilities as everyone else in the room, despite feeling somehow responsible for not being able to get up or help out; despite every “but,” I had a really fantastic time at just being me again.

My partner could  probably do with a little less “me” for a while, as this narrative has been gathering in my head.  I can finish today because while Sandra is out teaching, BF is here to assist. To let me just be.  Earlier my writing was interrupted when two old friends, from a women’s group I’ve been in for almost 20 years dropped by on their way to dinner. They understood implicitly that I’d be too tired to go out spontaneously with them. But they invited me, stayed to chat for 20 minutes, and then went on their way. Connection. Then my Monday night assistant, BF of course, arrived just as Luci got home and Rudy needed to get ready for bed.  She changed Luci and handed her to me to rock her to sleep, my routine with Sandra so I don’t risk dropping her. She made Rudy popcorn, put on a movie and sent me outside to write.

Me-On-Wheels is tired. But lives in a Santa’s workshop of compassion and love.  Some nights I am just so lucky.

I have a hard time saying thank you when it matters most. This is my shout out to the elves and fairies that make it all work.  Shout out to the Wobble World. It’s your magic karma shop. Thanks.*

*Burn after reading.

The problem with shoes

(Editor's note: You'll notice I am going backwards in time, as I post the essays that I've written along the way.  This might be the one that started it all. The one that I found helped, just a little, to write it all down. Older essays are dated to support the illusion of time as linear. Does time matter? Have I moved to a different place since then? Some days. Time bends strangely. Sometimes even the older essays are now. Sometimes the new ones are then. It's a mysterious world....)

06/14/10

I am the anti-Carrie Bradshaw. For women of my age, you’ll remember Carrie Bradshaw as the glamourous main character of “Sex and the City”.  The thing about Carrie, one of the many cooler-than-I’ll –ever-be things about Carrie, was her shoes.  Stilettos in every incarnation. Grungy, sexy, punk, professional, demure…. Her shoes defined her, sculpted her, enhanced her, made her the character we loved. And she loved them. Loved them in an unnatural way. Obsessed over her shoes. Cared for them like children. Carrie and her shoes were one.

I used to be one with my shoes.  A lifetime ago now. First I had to stop wearing clogs and mules, because I started inexplicably falling out of the open backs. Then I had to stop wearing heels of any type, because I was constantly twisting my ankle when my foot collapsed inside the shoe.  I cried a lot as I gave away all of my sexy shoes and replaced them with sensible flats. Luckily, flats were in at the time, and good looking flats were not hard to find. Once you set your mind to it.

It was flats or going barefoot, which is frowned upon at my job, so I made it my mission to find cute flats. Sure they’d never be sexy flats. Never “knock-me-down-and-f*#k-me-shoes” as we used to say in my pre-feminist, Neanderthal days. But I could live with cute. The fact that I am intensely strong-willed works in my favor here. I decided there was no choice but to embrace flats, and so I did. I found flats by every designer I loved. I found metallic flats, cute flats, elegant flats, sassy flats, you name it, I found it. Okay, not sexy flats, but I’m no magician.

Then I got a leg brace. Officially an AFO (ankle/foot orthotic). Officially a UFO (ugly f*%king orthotic). And this UFO demanded a lot of me. Almost more than I could bear. This UFO demanded…. Sneakers.  That’s right, sneakers, and hiking shoes. Exclusively. 

“But I don’t wear sneakers”  I wailed to the orthodist. “I guess you have some shopping to do” he responded calmly.  The truth was I did own a single pair of sneakers for working out, but I hadn’t brought them so he would not have the option of choosing them as the right shoe for the orthotic. I brought every other pair of shoes I owned, but not those ugly, utilitarian sneakers that I hid in a closet separate from my other shoes. Those sneakers lived in the guest closet and would stay there.

I cried all the way home, unable to imagine this grotesque turn my life had taken. I called my sister who found it hilarious that I was so broken-hearted about wearing sneakers.  “We’ll find something cool” she promised. She was coming out in a few days to help me and my family adjust to my new level of disability. I could not picture it. I was not in any way reassured.

It would have been nice if it ended there. But it didn’t, of course. My kind and generous sister made the mistake of taking me to the mall to find those cool shoes she promised that would fit my new UFO. First stop, a comfort shoe store.  The sales woman was fakey-nice who pretended to remember me and asked about my leg “injury”.  I told her it was a progressive neurological disease that would ultimately prevent me from walking.  “Oooh. [silence]. What can I help you girls find?” Ultimately after I’d exhausted myself trying unsuccessfully to fit my brace into 15,000 ‘athletic sandals,’ I tried a sneaker for my sister’s benefit. Not surprisingly, it worked. It even had special laces that came in at an angle, not directly on top of the foot, which made the brace fitting inside easier.  So that was it. I bought my first pair of sneakers.  I wore them out of the store, the way I used to when I was a child because I was so excited about my new shoes that I couldn’t wait to wear them. Damn were they comfortable.

Next stop, a new Clark’s store. Now if you don’t know the brand Clark’s, I should tell you that this is also a comfort shoe. In fact, I’d always thought of Clark’s as your grandmother’s comfort shoe.  But my sister was adamant that I would find one pair besides sneakers I could wear. She still believed in the cool shoe solution. So she dragged me into Clark’s, where I was surprised to find very cool styles.  Not for me and my giant UFO. But for someone else. Someone else’s grandmother. Okay, not the grandmother- I was just being snarky.  They had great shoes.  Great.  So great in fact, that I found several pairs that were my very favorite shoes that I had ever seen. They were deeply stained leather, very rich brown with ecru stitching, a slim band across the top of the foot, near the toes but not obnoxiously so.  Cork wedge heels. And then I saw them. My dream shoes.  A 4- inch cork platform wedge. Retro, yet contemporary. Rich black with the same ecru stiching. A solid band of suede that went from mid-toe to almost the bottom of your ankle, about an inch away from the ankle.  With a seam running down the middle as if the suede had been stitched together by hand. As if they had been sewn for your foot specifically, sandal couture, by a shriveled Italian shoemaker crouched at your feet to put the finishing touches on his masterpiece.  I was speechless.  They were incredible.

They were the shoes I would never again be able to wear. 

I guess I forgot to mention that I had taken two muscle relaxers before we went out, and then I popped a Valium because I was so upset and anxious at the thought of what I might be forced to endure in shopping for the UFO. By the time we got to Clark’s all my meds had kicked in. And I was, to put it mildly, pretty loopy. It first manifested as me declaring in a loud voice things like “I CAN’T BELIVE THAT CLARK’S MADE THESE SHOES. THEY ARE ACTUALLY PRETTY COOL.” It progressed to me telling a salesperson my theory about Clark’s and grandmothers, but that they (the store) carried cool purses, which was a surprise to me. Big sis was giving me the emphatic finger across the throat sign at this one. So while my sister tried on the shoes I loved most in the world, and walked around in them like she didn’t have to give a thought to her balance or lifting her foot to clear the floor, I took a seat next to the cash register and fingered the socks. “Are you sure you like them?” she asked. “You don’t think they are too….I don’t know….sexy”?  Okay, she didn’t say sexy, she said something else. But they were sexy. They were the sexiest shoes I’d ever seen.

By this time, I’d picked out several pairs of socks that would go with my new sneakers. I started weeping quietly as I paid. Maybe I was bawling. Everyone appeared uncomfortable. I waited outside while my sister purchased the best shoes in the world. The shoes I would never be able to wear again. 

She came out of the store and tried to be upbeat. She thought maybe I was crying over the socks. She was giving me a pep talk about how they make really cute socks these days, sometimes even made out of soy! “It’s not that,” I wept. “It’s just that I really love your new shoes. I LOVE them. They are the best shoes in the world. They are so me.”  And the torrent started. I couldn’t shut up, and I couldn’t stop sobbing. I could have collapsed there on the filthy mall floor and if I could have moved my legs I would have kicked them like a six-year old having a tantrum.  IT’S NOT FAIR, I would have shrieked, THOSE ARE MY SHOES.  But I was thirty years older than six, and I had enough self-control to hobble on through my tears.  I didn’t’ want to make my sister feel guilty. It wasn’t her fault that she could walk. I was glad she could walk in those beautiful shoes. I was glad somebody bought them- they deserved to be bought. Nonetheless, I was inconsolable.

The day ended with the purchase of a pair of hiking shoes that also fit my brace that had a few pink touches to make them more ‘feminine.’. My new dress shoes.  Satisfied that I had a new functional shoe wardrobe (and perhaps because I was so stoned on Valium by this time that I could barely stand), we went home. Tempted to put my new shoe wardrobe in the guest closet, I compromised and put them in their boxes on my bedroom floor. In the corner. Where I intended them to stay. I slept off the despair and dreamed of wedges.