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.

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.

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.

Nom de plume

A pseudonym.. A nom de plume. Hah! It’s so George Eliot, so narcissistic. Who cares?  Only my old self. The one before MS. The independent, self-reliant, fearless former me who still shows up at work and pretends she is still in charge. 

Why can’t I write as myself? Which self? The hilarious part here is that as a very healthy, very naïve, very young psychologist, I used to work with clients in adapting to chronic illness. I barely recognize her.  It was all so (clean) back then. Here are the techniques to use for chronic pain, use these for acute flare-ups, develop these skills for improving your social life despite your understandable desire to keep the covers over your head…..

The right set of skills, the requisite knowledge, you are good to go.

Maybe I missed something. Was there a chapter of the manual I forgot to read?  Because my very best efforts at mindfulness, my careful training of my mind, fails to diminish, or even slightly alter, the suffering.  Twenty-six year old self-- you write a blog. It can be haughty and academic and even condescendingly well-meaning. But my 26-year old self can’t; She’s busy, telling people how to feel better, telling people to buck up.

I, on the other hand, am available. I am at home, trying to recruit enough energy to both play with my kids and clean-up the house a little. Cleaning up the house! Is this what I miss? Really?

Really.  That self back there, she never once considered that at any time in the future she would have to negotiate carefully the choice between 10 more minutes in the pool and trying to push a vacuum cleaner. She would have joked that she is lazy anyway.  Lazy is a gift, an entitlement you don’t notice until you no longer have the luxury.  Sometimes I pretend I’m lazy now, to hide that I would not be able to stand up or do something that is entirely pedestrian.  I want to be able to clean my own house. Even one room.  I forgot to notice how easily I used to move through space.

So-- my name. I have the one name that has been me my whole life. That is the me that goes out into the world each day with determination and grit.  That me gets things done.  Well, as long as those things can be done from a chair, for which I am in a great profession. And there is the other me. The self  that is available for writing this blog. The one who is uncertain and embarrassed, confused and vulnerable.  Vulnerability is so not me. Not that me anyway.

Feeble as a centurian, scared as a child, trying to build an identity over the bridge between then and now. Not separate entirely, but at a polite distance. Adjacent to the self I thought I would be. How long does it take for identity to catch up to reality?

September 5, 2011

God in my spoon

My 5-year has been talking a lot about “God” recently. The comments are always off-hand and slipped in at moments I haven’t been able to immediately address them.  This morning at breakfast, he mentioned that God lives in the sky.  Where are you learning about God, I asked (surely not at home, where I involuntarily cringe whenever someone says anything that rings of the Catholicism with which I grew up and came to vehemently reject).  “God lives in the sky with his son and he protects us” was his reply. 

Pause, take a moment Mommy, because this has to be good.

“Some people believe that,” I offer gently. “I believe that God is everywhere, and inside all of us.” 

“Inside me? Everywhere?”

“Yep, even there, in Luci’s spoon. Luci is eating God.” (Why, oh why, do I have to be a smart-ass, even when my child’s basic understanding of the world is at stake?)

Rudy thought that was funny, and, now done with the conversation, stuck his head into a large glass hurricane vase on the table and coughed a few times.  “Stop coughing on God” I joked. He lifted his face out of the vase and turned to me, serious and adamant: “God lives in the sky and protects us. He is not in this bowl.”

Think fast Christina.  “Christians believe God lives in the sky and protects us. Mommy is Buddhist. I believe that God is inside of each of us, that we are God, and we try to live in a way that honors and respects the God in each other and everywhere. There are a lot of different ways to think about God. As long as they help you to be a good and kind person, they are all fine. None of them is right or wrong. It’s about what feels true to you.”

Blank stare.  Then, “Which race car do you want to be? I’m blue.”

I object to the fact that Buddhism is so much more difficult to distill down to simple, happy, comforting constructs than Christianity.  God in the sky who protects us is just so much easier. 

A year ago, Rudy found a dead bird on the sidewalk during a walk with Sandra and Luci.  He came running home to get me (apparently believing I had some special affinity with deceased wildlife.) I got a shoe box and rubber gloves and hobbled down the street with my walker and my big-eyed boy to retrieve the bird. He was sad about the bird and was hoping to keep it. I saw a golden opportunity for religious education.

“It’s important that we thank the bird for sharing the world with us, and then bury him so he can rest and be free. He’ll come back to the world again, in a different body, but first we need to help him finish this life.”  Wordless with grief over this anonymous bird, Rudy picked a site in our former flower bed and starting digging.  [Knowing this area would soon be cemented over, I thought it was an excellent choice and brought out the trowels.]  We got him in, wrapped in paper towels, and covered his grave with a small pile of beautiful river rocks.  We lit a candle (one of those tall cylindrical prayer candles with a picture of the Virgin of Guadalupe glued to the front), thanked the bird for sharing the world with us, and offered our hopes for a peaceful transition and an auspicious reincarnation.  I was pleased with myself for working in a lesson on reincarnation, gratitude, and death as merely a transition.  Nice job Mommy.

Later, Rudy explained to a guest that the bird we had just seen fly into our tree was dead, we had buried him earlier. “Birds can’t fly when they are dead. They just lay there until they go to Heaven,” his wise 6-year old companion told him authoritatively. He looked at me, saucer-big eyes, hoping for a rejoinder. “Well, getting a new body takes some time. That bird in the tree is probably not the friend we took care of this morning.” Two little faces, perplexed and maybe a little bored, stared back.

“Who wants a popsicle???”

Later I mentioned it to a friend with a son Rudy’s age. She said her son was also asking about death.  She tells him that you go back to live in heaven with God, like you did before you were born, with all of the angels and big fluffy clouds.  So simple. So comforting.

I, too, want to pass on easy answers and a big kind Daddy who welcomes us back and lets us lounge on the clouds.  The Daddy God. When did that stop working for me? When did it all get so much more complicated?

People often assume that I must have thought (or be currently thinking, I am not sure), “Why me? Why did I get this terrible disease?”  I respond, in all honesty, that I have never had that particular form of self-pity. 

Why not me? Random shit flies in a chaotic and expanding universe. You try to duck. Sometimes you get hit, sometimes it is someone else who didn’t see it coming and don’t have time to get out of the way.  No, I have always thought “Why not me? Why would I be so special as to avoid the frailties of being human?”

The human brain searches for meaning, structure. A famous existential psychologist and concentration camp survivor, Irvin Yalom, once said “When we have the why, we can live with almost any how.” What is my structure, the construction of meaning around difficult events and circumstances?

Any meaning I construct is frail and wobbly. Ha, my structure needs a cane! The furthest I can get is to believe that what I do with this illness is more important that why or how.  Buddhism tells us that pain is unavoidable: We are in this earth-life to evolve by transcending the inherent suffering in the human condition. Like the lotus, rooted deep in the mud, in dark and frightening places where they may never be seen by human eyes. The lotus blooms a defiant 15-18 inches above the muck in which they grow, asserting their inherent perfection, their luminosity, regardless of a largely indifferent world. It’s an explanation I can tolerate; not saccharine, but not as hopeless as random bad luck. 

Yet it is impossible not to miss the Daddy-God, the option of appealing for mercy to a loving and all-powerful entity.  “Our Father, who art in heaven….This f*&@*ing sucks and I don’t want my kids to watch me suffer or miss any tiny moment of joy because their mom is sick.  How about a little somethin-somethin over here?  A tiny miracle. I promise not to tell, because then everyone will want one.  Too much? I’m willing to cut a deal. Give me my leg back and I’ll keep the searing arm pain.  Trunk spasms for fatigue.  Electric feet jolts for use of my writing hand….”

The refrigerator hums. I can hear my children breathing. Sitting here, on a meditation pillow in front of my laptop in the dead of night, I can be luminous when nobody is looking.