The Difficulties of Being

03/21/12      

There is something that needs to come out.  I’m not being mysterious, I have no idea what that something is.  I often have the sensation that my writing is organizing itself in my brain long before I approach a keyboard. Usually there is a general theme, but each individual idea is a little unruly and they all wander around unable to line themselves up or form effective working groups. My thoughts are like kindergarteners, vaguely aware that they should be doing something, but scattering away, distracted by a leaf fluttering by the window or a colored piece of paper left on a table nearby. My job is to notice when the gang is all there and gently attempt to make them hold hands and line up single file.

It’s like noticing before I get a migraine in that I have a felt sense of a migraine coming on.  I couldn’t label or quantify the symptoms at that point, and it feels a little presumptuous to name an event that will take place in the future before I have a hint of pain. Usually, because I try to be logical, that means that I delay taking migraine medication. Since migraine medication is most effective at the first sign of a headache; by the time I am there, I am unable to open my eyes or leave my bed because any light or sound is a bomb in my head. 

What is the first sign? How do you know, in advance, when you are there?

I don’t usually inform friends that, “I have a migraine coming on,” although I am curiously not as shy about predicting “I have an essay coming on.” This has been my refrain for months now. I have sent myself by email little thoughts or expressions that captured something important for me at the moment. Although I can see the words all neatly organized together when I open my email, they no longer make any sense to me; even I wonder what I am babbling about. I think that is probably a bad sign.  I try to reframe the image of kindergarteners into a vision of the goddess Athena, springing forth from Zeus’ head. I want something to spring whole from my head. I want everything to make sense. Instead I have fragments of sentences, words that felt important at the time, a list of what appears to be random neural firings.   I have a sense that there is something important rattling around in my cortex, but it remains pre-verbal, inaccessible as a whole.

I have an old friend who wrote recently to ask how I am. Not really how I am, but just to check in, send birthday wishes. More and more I find myself not just grumpy about (as I’ve been in the past), but actually unable to offer a pithy phrase, or socially-sanctioned response to many social niceties. There is so much going on at one time, that to pick one descriptor out of so many possibilities seems impossible.  It’s like my cognitive threads all got tangled and now I can’t find just one line to follow.

How am I? I am…noisy. My brain that is, my brain is being very noisy. This week was my birthday and, as is the case when women age, quite a few people have asked me how I feel about it. I look around in my head for an honest answer and find that I feel nothing about it.  The implication of the question is that women want to stop the clock- lest the inevitable physical signs of age become more apparent. Lest they slow down, or become, god forbid, old.  Look, I use a walker. Sometimes a powerchair. I bought my first cane in my early 30s. I need to sit down frequently before my legs give out, and stand up just as often to prevent my muscles from stiffening. I drive a mini-van with hand controls and a wheelchair lift, for god’s sake. Crows feet? Sagging skin? I am always aware of the clock ticking down; my birthday is not necessary to remind me.

Now the title makes sense!! Days ago I sent myself a message about the title to the writing that I would inevitably do to get the kindergarten class lined up: The Difficulties of Being.  It came to me after a conversation about being unable to find an accessible meditation center where Me-on-Wheels might join a community. I titled the idea, “The Difficulties of Being [Buddhist].” I immediately recognized that “Buddhist” was too narrow and narcissistic, as there are so many things that are so difficult to be.  Like a dog with a bone, my mind grabbed it and ran away to gnaw. It is not just about categories, and the sentence doesn’t need a subject.  Essentially true on so many levels, sometimes it’s the being itself that challenges me. In response to my old friend’s question: Being is challenging me, that’s how I am.

To me, this is not a depressing thought. I can hear my sister sighing now; Sandra urging me to increase my dose of anti-depressant medication. But there is nothing wrong; I am merely being [challenged]. I am being [productive]. I am being [happy, most of the time; except for when I am not, which is often].  So is everybody else. The title should be: The Difficulties of Being [Insert Your Name Here].  Who isn’t struggling?  Are there people out there for whom being is easier?  When someone responds “Fine” after an acquaintance hurriedly shouts, “How are you?” before disappearing around a corner; could they actually just be fine?  It seems too simple, too “Leave it to Beaver.”  I am always tempted to respond to the casually tossed “how are you?” with something like: “feeling unworthy,” or “mildly anxious,” just to see what happens.  “How are you?” has become an acknowledgment, a friendly salutation, but no longer a question.  It always confuses me, because how I am, is very complicated.

I wonder if this is truer for people with illnesses, or disabilities? This idea does depress me, but I still think I am on to something. I’ve become so closely identified with my body, and attending to the drip-drip-drip of shifting disabilities, that I would have to refocus my energy in order to report out alternative, independent thoughts. And refocusing just requires so much energy that I usually opt out.  The most honest response in many circumstances is something along the lines of “I am focusing on lifting my foot so that I don’t fall, worried about my class not being interesting enough, hoping I was on schedule with my medication, wondering if I have time for a smoke, and remembering with regret about someone that I forgot to call back.”

Maybe this is one of those MS silver linings that I hate to admit to finding.  Maybe, just maybe, the fact of living inside this body makes my relationships more real than they might be otherwise.  I don’t have time for small talk or paying attention to people I don’t care about when coordinating movement takes most of my attention. I have had to painfully cull the relationships that couldn’t make the leap from the old me to the new. How I am is always complicated now, and I’m more cautious about with whom I share it.

I, like all of us, am a gazillion and one things at a time.  I am grateful and angry, optimistic and hopeless, humbled, awed, and disappointed. I contain the universe; am a daughter of the Big Bang.  And yet my existence, my identity in this life in this body, is as ephemeral and insignificant as a speck of star dust, hurtling through the galaxy. One set of circumstance, in hundreds and thousands of lifetimes.  It seems absurd to have this compulsion to piece it together- to make it make sense.

Yet, I am riveted by the question of other possible outcomes. I want to know who I would be if I didn’t have MS. Would Me-without-MS have a cheerier outlook? Would I be able to answer “How are you?” with “fine” and I’d mean it?

I asked my mother if she thought I’d be different if I didn’t have MS . This is the extent to which I am haunted:; hounded by the ghosts of other versions of myself.  There was a long pregnant pause before she replied: “Well….You’ve always been different honey. That is how your mind works.” Then she, who we both agreed had a genuinely rosy outlook and felt fine being “fine;”  she reminded me that we can’t parcel out pieces of identity as if each were independent of the others.  Identity is the whole of so many different parts. Me-in-a-different-body is not possible to know.  Me-in-a-different-body does not exist. She has never existed, and will not exist in the future. It’s not that I am being cheated of the life that I thought I’d have. I have this one, and it is what it is. I am who I am. 

Identity is a tricky beast. You think you nail it and it slips out of your grasp.  The evolution of identity is an unceasing process; requiring perpetual re-adjustments to who we are now.  I think I’ll write that friend back and say, with all honesty, that I am fine.

Dumb Growls

Dumb Growls

02/04/2012

This phrase, that I don’t even know the meaning of, has been floating around in my head for days. Close to the bone. It feels like I am living so close to the bone these days. We all are. Like the cushion has been sliced away, and my vulnerabilities are right there on the surface, like skin. When your body is unrecognizable to you, there is no other pretense. No artifice seems possible, as I observe my central nervous system devolve.

Have you ever had the opportunity to watch as a child learns to walk? They are tragically unsteady; each of the million tiny movements required to walk is brand new and requires total attention. Distracted for a second, a foot turns, balance falters, and they land- diaper on floor again and again.  Their brains are making connections faster than the speed of a blink.  The neural coats are not quite on yet, and as a result the transmission is choppy. So one foot forgets to lift, or it lifts too enthusiastically and throws the whole procedure off kilter. I fully accept that I am a complete science nerd, and I love to watch as little brains myelinate, and movements become more certain, more precise, over just a few years time. My son is working on snapping his fingers, and blowing bubbles with gum right now (not, primarily, simultaneously). I find it endlessly fascinating as he cognitively understands what needs to take place, but struggles to make his body complicit with these novel instructions.

When he was just learning to walk, I was busy un-learning how to complete that seemingly effortless symphony of motion. As he became more sure, I hesitated more. As he grew comfortable with a narrower stride, my legs were started to look like they were balancing a very pregnant woman with a pumpkin on her head.  Not graciously, either.

My son has become a graceful creature, all raw muscle on a tiny little frame, skin so close to the bone.  I, on the other hand, feel like an injured hippopotamus moving through space.   In a wilderness film, I’d be the animal separated from the pack to provide sustenance to the tigers.

That last sentence sounded funny in my head, but when I read it out loud seemed so tragic.  This is my tragi-comedy. What if, before we were born, our souls lined up and reported what movie genre they would like to choose for this incarnation? Many would choose romantic comedy. Some would choose drama, or comedy. If your soul was late getting in line, there might only be horror or suspense story lines left. I came in somewhere in the middle, had to have that second cup of coffee but at least my alarm went off. This is what I chose: Funny in my head; tragic in body.

Recently I hung out with a very dear friend in the middle of his worst nightmare.  This particular nightmare is the gift that just keeps giving; full of tangles and twists that drop the ground out time and time again. This friend believes in science. Physics, actually. He’s all about the time-space continuum and it’s ability to bend. He believes in emptiness, at the core of matter; the black hole. It brings him peace. Electrons, circling protons, the illusion of solid matter.  His presence, watching him move through the wildfire swallowing everything he thought was real, is magnificent. He has never been so present, although he experiences himself as cut-off. He is raw, close to the bone, and it allows me to know him in a way never possible before.  He make me wish that I too, believed in quantum physics. Black holes seems probable, sucking in the life around them. Some of us live in the neighborhood of black holes, and spend immeasurable energy resisting their gravitational pull.

Another friend, another virulent autoimmune disease. Her husband leaving her after 2 decades of shared history. She only speaks of him with love. Her compassion and enlightenment makes me weep when she talks to me. Who is this person, who can transcend such horror? Who am I, who cannot?

My friend Kelly, about whom I have written before many times, the one with AS- possibly the most tragic of all of the auto-immune disorders in my circle, has recently been diagnosed with cancer. Really universe? Really? Shouldn’t things be somewhat evenly distributed among the population? Even just a little?  She’s one of the kindest, most gentle and consistent people I have ever known. If I was offered a break by whomever might be up there, making these decisions, I’d give it to Kelly.  I don’t even believe there is someone up there; offering punishments, rewards, and occasionally a get-out-of-jail-free card. But I am angry that there isn’t, and even angrier if there is.

I don’t want to find the bright side. I don’t want the light to creep in. I want to stew in my own little cauldron of self-pity and rage. Perhaps for this reason, I have been unable for a month to complete this essay, and it’s companion piece, two treatises on darkness. I am determined not to let the light slip in, not to appear “resilient.” I am so fucking tired of being resilient. I just want to be small and ugly and relentlessly disappointed. I don’t want to suck it up and believe that I can teach my children about coping, compassion, and moving forward regardless of the road bumps (or 15- car pile-ups, as the case may be).

Is this a 15-car pile up? It definitely feels like that- at least part of the time. Are there bodies flung all over the freeway, their bereaved making the primal scream, the universal and unique sound that escapes when we lose someone we love? When I found my beloved German Shepherd, unexpectedly dead, years before it should have been “his time,” the wails that I emitted over his lifeless body sounded like they came from someone else. Somewhere else. An endless well of grief, an animal sound that I had never before heard, much less emitted. And I didn’t care. I howled and screamed, completely taken over by grief, the primal scream of loss.

Later that year, when I lost my first baby, there was no screaming. There was only silence, like I had been caught in an avalanche. The silence roared; everything else was drowned out. I think I cried silently for months. Every night, she was still there in my dreams. In my dreams, I safely contained the new universe. The silent weeping would start the minute I awoke; reality assaulting me during each moment of consciousness. My world became enveloped by silence, the peculiar silence of bearing the unbearable. I was honestly perplexed that my heart was still beating, and I didn’t care enough to wish it wasn’t.

Maybe that is what I am trying to accomplish here, in language where I want desperately to demonstrate my grief, in language that stubbornly refuses to acknowledge hope. I have never howled about the loss of my body, the body that I had lived in for so long, the body I never considered would change into unrecognizable form. The howl is something language cannot do. It comes from a place beyond language. Jeannette Winterson writes that “Grief leapfrogs over language and lands in dumb growls beyond time.”

This is my dumb growl. This is my testament to everything I have lost, to all of the people I love who bear the unbearable, every day. We blend in, ghosts among the living, ghosts among those who have not yet, or are not currently, in the process of losing everything that makes sense. Inexplicably, the world hasn’t stopped, or even slowed, as we howl and weep. There are children who need us, partners suffering in their own silent hell; family, friends, and even strangers who need us to be okay. So we suit up in our armor of the way we were and move through the days. The growling ghosts stay mostly out of the sight of others. It is hard enough, watching someone you love suffer, and the losses are shared by everyone who loves us. It would be unthinkably selfish to share this too: This desperate grief, the unraveling of who we were, the empty space of loss and outrage.

It is not that there are not other things too. My children are miracles whom I have the honor to watch develop every day. My partner is the strongest person I know, who misses nothing, but keeps us afloat anyway. For these and others, I have to walk through the days, I have to keep accessing the me that they recognize; the person who suits up and shows up every single day (albeit with more “breaks” to give the ghost some room to roam.)

Kelly- I know you are howling. I know you put on a brave face, I know you continue to function in the world as everything crumbles inside of you. Me too. There are many of us out here. I hear your dumb growls. They sound just like mine.

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.