Sunday, September 25, 2011

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.

Monday, September 19, 2011

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 4th 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.

Thursday, September 15, 2011

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.

Tuesday, September 13, 2011

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

Sunday, September 11, 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.
 

Welcome to my imaginary blog


Does anyone else think this is hilarious- in a dark and painful way?

I was doing something important to me  (more on that later). Yes, yes, I was over-doing something important to me (my rehabilitation scientist sister in my head). I don’t do it unless I overdo it so that is really beside the point….I was doing something and my body was not cooperating. First my legs, then my hands. Being as I am sort of accustomed to uncooperative legs, my hands were the important part of this task. But they checked into Hotel California and you know the rest of that story.

I found myself a weeping heap on the floor, with my 1-year old daughter looking at me confused (was this a game? Should she pretend to cry too?) and my sensitive magic boy running over to hug me. Luci sat in my lap and Rudy hugged me tightly while I melted into an MS-y puddle on the living room floor.  I tried to explain, 5-year old style:  “Have you ever been really frustrated because your body wouldn’t let you do something you really wanted to do?” He hugged me more and said “I love your belly. I love your hands. I love your legs. I even love your guts.”

Really, you’d have to have a heart of stone to not sob even harder and more uncontrollably after that kind of guileless, authentic expression from a 5-year old who is usually a dinosaur and not a boy at all.  How can we start out so kind and become so hard (more on that later, I’m sure)?

So my partner rescued me and my children from a rapidly devolving scene of desperation and grief.  I said to her: “I should write that on the imaginary MS blog,” only this time, I think I actually will. 

So I grab my laptop and escape from the scene of the melt-down. I get ready to write the first entry in my imaginary MS blog that I might be about to make real, and I realize my hands are so weak and so burn-y that I cannot type.  My life-line.  This is what I do.   This is how I process.

Some healthy part of myself, well, healthier than the distraught toddler who wanted to throw the hapless computer in the pool, whispered a reminder that I have dictation software. Imagine! Dictation software bought for me by the college where I teach because I was having trouble typing. For over a year I carried the mic in my bag, strictly out of guilt, because I had never set the program up (sorry taxpayers). I had never set the program up because although I have adjusted (kind of) to a leg brace, sneakers, a scooter, a powerchair, a minivan with a wheelchair ramp, wearing ice that looks like a bullet proof vest all summer (6 loooong months in Arizona), yearly catheters in my arm for steroid “pulses” and a thousand other indignities, I could not bring myself to get help typing.

It doesn’t end there. I wish it did. This would be an essay about coping and adaptation and it would have a happy ending and I would be whole again.

I found the mic exactly where I left it, and plugged it in. I started talking to the computer. Just the voice-training module.  Just the training module. But nothing happened. Nada. Nothing registered. The computer looked at me blankly. I talked louder. I enunciated better. I cursed like a sailor. Blank stare. The program I had ignored for so long was ignoring me. The lights are off. No one is home. There is no f*^&*ing dragon recording my surrender in text.

It’s typing or nothing. Typing or exploding from the pressure in my head of trying. Trying to type; trying to clean; trying to be a regular mom; a regular person; a person who doesn’t want to collapse every minute from the effort of trying so hard to do anything.

One day we will live in a world where our thoughts are immediately translated into what we want to say, the way we want to say it.  In this world, I need a five year old to open bottles for me and my legs are about as viable as the national budget. Said 5-year old is scooting out of the room right now on his bike, my grabber tool in hand to play with and torture his sister.  

The idea of me keeping a blog is absurd, even for a person prone to absurd ambitions. I don’t return emails or texts. I don’t answer my phone or often check my messages. I am an introvert and a poor communicator. But this imaginary blog continues to lengthen in my head, which I can only describe as a circus- but thankfully more Circe du Soleil than Barnum and Bailey.  And I wonder….is there anyone out there to whom these thoughts, this relentless, droning monologue about who I am and what it means now that my body is captive to Multiple Sclerosis, make sense?

Welcome to my head. It’s marginally more functional than the body to which it is attached.