moon shadow

slowing faster - is it too fast?

for about 9 years now, these legs have been slowing down. and while i've generally been feelin' groovy, at least when looking at the big picture, there are days. yes, there certainly are. days when the slowing down goes particularly fast; that is, faster than my feelin' groovy can keep up with. if this seems oblique to you, try living it.

i have mentioned my ongoing physical therapy, daily metrics, meditation, yoga, medications, etc. what is it that makes for a badly ms-ed up day, and what for a lighter one? and does second-guessing it make it worse? i think it's common for many of us with ms, to have a sort of superstitious thinking: i might notice a lighter step one day - or moment - and think to myself, 'is this my new high point?' (i.e., soon to be remembered wistfully as my leg drags along behind me even heavier the next moment or day.) or, i might remember back, maybe a year ago, what i felt was challenging then, now seems completely out of reach. i will wonder whether such thinking is incidental or causal to further symptom worsening - i.e. is there a psycho-somic (the ancient words meaning 'mind-body') process at work? and it sometimes seems like the thought itself sets a downward spiral in motion. which any neurologist would say is gobbledygook. but superstition often trumps science with me.

just back from some errands. at rite aid connected briefly with the clerk, 'chandra' (his name means 'moon' in nepali and hindi). i ask if he is from india, no he is from sri lanka (where, in sinhalese, he tells me, his name also means moon.) we have a nice chat while he rings up my purchases, then i am off to my next stop, whole foods; getting some produce and rice to make a daalbhaat dinner, sister and niece are coming over.

chandra, moon. i guess i'm being followed by a moon shadow. if i ever lose my legs, i won't cry, no i won't beg...i won't have to walk no more. the cat's words are prescient, and often much lighter than blue, sweeter than yoghurt.

but here is the thing: like i said, it's all slowing down, and the balance is getting more challenging; after i park the car in a handicap space, i stop, and in a moment arrive just at the speed my body inhabits. i slowly take the key out of the ignition, pick up the cloth shopping bags off the passenger seat, set them in my lap; open the door, pick up my cane, slowly reach it across - feeling its length and heft - to set it down leaning in the crook of the door. slowly inhale, set first my left foot, then the heavier one - my right - out on the pavement, exhale. it's okay, it's all okay, i'm all here, and it is happening, just as it is happening. the sky is bright, the warm air caresses. i have a shopping list in my pocket. how mundane can this moment get? but it is so big, so right, so just so: a psycho-somic moment to cherish. but then just as quickly i get lost in thought: there is a shopping cart just near the bumper of my car, a woman is approaching, will she take it? no she passes it by, it is mine... i push the cart, and before i set foot in the store, my mind is already in the produce aisle.

and this is how most of my moments pass, as if leaning just slightly into the future. most phenomena which happen along my way, are irrelevant at best, that is, don't even come into my conscious awareness. and instead often become an annoyance, or delay to my utterly self-important agenda. the cane can be either of these; but in the time-sequenced tableau at my arrival, it became a portal to the mysterious, an invitation into the miracle of right now.

i saw the dalai lama last fall when he was in d.c. his was a truly inspiring presence, even from a distance. at one point in his discourse he sneezed and immediately fell into his disarmingly infectious belly laughter. no comment necessary - the invitation offered by a sneeze into the beauty and wonder of this moment was so brilliantly shown - and accepted.

on sunday, my girlfriend and i walked around 'brookside gardens' a sort of arboretum not too far a drive from here. i was having a slow/slower/slowest day. was nice sitting on the benches, then lying in the cool spring grass, children playing about. walking slowly up some big flat rocks that were laid out like giant paver stones, it hit me of a sudden just how right it was to be going slowly at this park on this very lovely first full day of spring. even if i could have bounded up the path, would i have even wanted to?

may our sneezes - and canes, and eye nystagmi, and losses of balance, and inopportune cell phone rings, and children's interruptions, and obnoxious drivers cutting us off, and and and - may they all reveal themselves ever more as the invitations they are to the wonder and miracle of this precious moment.

amen.

walk the walker

i just read of a man who was born with cerebral palsy and didn't learn to walk until age two (a mild case presumably). he walked with such enthusiasm, even relishing his 45 minute walk each way to high school as a treat.

i park a walker (it was loret's) next to our front door. sometimes i will push it around the apartment with some cargo or other on it. i normally go outside with just a cane; but three times a week i take it up to the gym, because a workout can really make it desirable afterwards.

before going to bed each night i fill in a sheet with the day's metrics, some of them subjective - 'mood' for instance, or 'memory' - and others objective, that is, how many tries does it take to juggle three balls twenty uninterrupted throws. one of the objective 'tests' is how many steps does it take to walk a certain length down the hall. the first time i walked it - maybe a few months ago - miller was standing at the end, and it took only five long steps. he and i were both amazed, but it was a day of particularly good strength and balance. (for comparison, spencer can make it in three steps - or jumps). usually the number of steps ranges from six to eight. (some readers may find keeping metrics like this a bit morbid, conjuring up images of robert mcnamara's failed vietnam policy. and perhaps my indochinese body truly is on it's way to the red menace - to further this metaphor beyond all hope of utility. but i take these notes for good reason, not just because i am a recovering engineer: coupled with notes of the medications and supplements i take, my goal is to keep better track of what may be helping.)

i've recently had something of a harder several weeks, and yesterday a bit harder still. however, last night i made the 'walk' in six steps. spencer and miller were reading in their bunks, and spencer asked me how many. 'good job' he says. i tell him i've actually had a hard day, and maybe like a class or school that 'teaches to the test' this test isn't really very meaningful anymore. he quickly got my gist and said maybe i should 'mix it up.'

so this morning walking down the long hall and around the corner to the elevator i counted 35 - taking wide careful steps, no walker, no cane. then later with spencer going to the gym (on the top floor of our apartment) i stepped the same number. if ever i should push off a wall, that adds a step. so the measure is of gait, strength, and balance.

after reading of the fellow loving his walk, i felt genuinely privileged, all the walking i have done, and continue to do this life. across europe and nepal, and each day all the way down the hall, at a minimum. i'm lucky, i'm lucky, i can walk under ladders...

i was sitting in an easy chair and looked up from the sun magazine where i'd read of this similarly gifted man. my eyes perceived a vibrating tableau, pulsing with life, with love. i saw the picture of me with loret, of each of my boys with her, and the flag of nepal, three bells from my mother's collection - she died in 2001, shortly after i was diagnosed with ms - my dresser with folded clothes on top, in clear need of putting away for a week or two. i glanced over toward the window; it's a cloudy day, and raining, but not cold. i remembered how much i like walking in the rain. will walk later with my sweetheart. i've still got sunshine...

open up!

what mystery, what miracle lies before me today? i'm looking at the cursor, at the screen; i smell the quesadilla my oldest son eli recently made, the redolent air wafting over from the kitchen. because of a competing nystagmus in either eye - the left one relatively still at rest, my right eye more still when following a moving object - that which i see appears to be shaking, or vibrating, kind of pulsing in little circles. sometimes more than at other times.

i imagine you can understand this brings some feelings of loss - or emotional suffering - especially as this eye business has been gradually worsening since my ms diagnosis nearly a decade ago. i can still read and drive, and hope to keep up both for several years or decades more. yet this holding on, this clinging to such a basic ability that seems at risk of near certain decline, it can get tiring. and perhaps clinging to it does nothing to keep it even an hour longer. maybe even to the contrary, the effort will hasten the rate of loss. so far i have found nothing, nor learned anything from doctors about eye exercises or anything like that. 'baclofen' i am told, and handed a prescription. which does nothing as far as i can tell. i count out a daily tablet into the weekly pill container with a dozen or so others, mostly 'over the counter,' vitamins and herbal extracts. i have other symptoms too, of course, but the vision is what i see, or experience, even when at rest; whereas diminution of balance or gait, for instance, goes into hiding as i rest on my haunches.

i have felt occasional moments of 'grace' in my life. maybe the light will strike the wisteria in just such a way, so vivid and alive in the late afternoon. or while stirring a dollop of honey into a cup of green tea, the light reflecting off the surface comes alive with sparkles of diamonds. it's kind of like deja vu, only the moment doesn't seem to harken back to some impossibly lost time in the past; rather, it's this moment that will suddenly deepen. or come into much sharper focus, clarity. these moments of connection to the infinite, when space and time fuse into one, where the boundary between me and all else simply melts away: such moments seem to come to me less as my vision has deteriorated. or they come in other ways.

i close my eyes, notice this breath; i can hear the buzz of traffic outside, kind of like the surf, waves rising and falling with the cycle of nearby traffic lights. an occasional honk like an audible sting by a jellyfish. there is the hum of the refrigerator. then my 15 year old spencer steps over - he's home for spring break - 'how's the blog going dad?' i minimize the window. 'writers' - my body language clearly suggests real writers - 'have this thing called a door that can be locked,' i say indicating the area just behind him, an archway that opens into a literally closet-sized space, barely enough room for the desk and a chair. 'sorry,' he says, immediately understanding, and walks off. then the self criticism opens up: what did i do that for? followed by the back and forth: he's going to be here for three weeks - boarding school gets a hefty spring break - i'm just drawing boundary lines. yes, but there would be a more respectful way to do that. etc. etc.

what miracle are these growing boys that surround me? they who vibrate and wobble even more than the stationary objects that surround them? clear vision and a felt connection through the visible spectrum of light is one thing. but to feel the deepest connection of all, that bond of life through countless generations, even as we wobble and falter through our days of stilted interaction - that is the acme of love, and the realization of the miracle.

later at the dinner table, we check in with the highs and lows of the day. spencer's high, when we went to the gym together. 'me too,' i say. 'your low?' 'when you got mad at me.' 'mine too. i'm sorry.' 'it's okay dad,' he says.

the miracle is always right here, just waiting for us to open up and drop right in.

lucid in the sky - is this a dream?

sitting here after a stressful morning of bills, school re-enrollment contracts (one deadline missed, two awkward phone calls made - more tomorrow). then i discovered a vehicle emissions test notice - two weeks past due! (get this, the mva - the agency that is called dmv in most states - said i could have an extension, gratis, of four months! there is a god...). but what on earth have i been doing lately to take my eyes off all that?

for one thing, i've been having occasional lucid dreams, maybe one every couple weeks. never had one prior to about a year ago, but i'd always thought the idea was intriguing. that is, being volitional, or self-aware while dreaming, exercising some control. 'some' is the important word here - at least for a novice like me. maybe one day i will be able to paint the sky green, or turn the ocean into chocolate pudding. there are of course some folks who would question the wisdom of bringing any such ego or thought into the realm of sleep - they'd rather kick back, relax, and let the subconscious put on its nightly cinema. which is of course still an option, or, rather, what usually occurs. but even in a lucid dream, again, the control is limited. maybe i'll decide where to go, whom to visit, or, even, what to do, but what and how it happens is still quite unpredictable.

if you are interested in learning to have lucid dreams, i found two bits of advice from our good friend, the www. first, start a dream journal (less important); and second, get into the habit of asking yourself, during waking hours, 'am i dreaming?' or 'is this a dream?' (more important). your answer will normally be 'no,' of course, until there comes a time when it isn't. once you know you are in a dream - the answer having been 'yes' - you'll perhaps decide to do that thing you might not be getting enough of in daily life. and i don't mean the laundry. but with grief having done some bizarre things to my desire, such nocturnal liaisons were not really, shall we say, very rewarding. i then thought, how about flying? yes, that would be really cool! and it was. but it didn't last long. the thing is, your memory in the dream state is way worse than even in daily life. so my plans for interstellar travel, dispatching villains like dick cheney, sipping a mai tai in bermuda, or surfing a tsunami have all come to naught. so far.

what i have been able to do, is seek out loret. what does she think of my girlfriend? her answer, a smile. and if you've heard anything about grief, this clearly seems like a milestone. still hoping for that walk on saturn's rings, though; but i'm open to whatever might happen. with some exceptions: what i can't imagine in a lucid dream is sitting down at my desk to work on my bills or other office stuff. or blogging.

by the way, are you dreaming right now?

the secret

'you know secret to chinese cooking?' wu-seng's dark chocolate eyes bored into mine.

when loret was a grad student at ucdavis, her classmate and his wife had invited us to dinner. after hearing their daughter wendy give a stirring rendition of 'lightly row' on the violin, we sat sipping our drinks: water, lemonade, tsingtao beer. sun poured in the window of their tiny married student apartment. having tried to stir-fry for years - skinny idealistic vegetarian that i was - i'd usually muster something vaguely edible, occasionally even 'not bad.' without a doubt, his question intrigued me.

'no, i don't; i'd love to hear it.'

he got right to the point - 'bean sauce: that the secret!'

i nodded, smiling, then narrowed my eyes. bean sauce? sounded like some kind of delicate and savory condiment you could only find in chinatown: just go down the alley between waverly and stockton blvd., open the iron gate on your left, rap a secret code on the door. ask for taitai lin. cash only.

before i could ask, he pointed to a bottle on the table: 'kikkoman.' of course, soybean sauce. ba dump bump.

'thanks wu-seng, now i know the secret!' i reached for another beer.

later i heard the wok tool click-clacking; i went back to the kitchen, perhaps i could learn from his technique. as he scraped and stirred with his right hand, his left occasionally took a spoonful of granular white substance from a bowl on the counter, and tossed it in.

'so, are there really bicycle traffic jams in china?' davis claimed to be the bicycle capital of the u.s., but i imagined our transit system was even further from the chinese variety than my bland stir-fry was from the meal he was about to serve up. he stirred in another heaping white spoonful.

'every day, sunday too! bicycles -very slow - cars better. american system, much faster!' bright smile, one silver crown on each side of his mouth. i kept my dark cloud opinions from raining on his automobile exuberance. and i continued to wonder about the mysterious white substance. msg is white, i knew, but i thought it was much finer - a powder. i could no longer resist the temptation and took a pinch, sprinkled it on my tongue.

'sugar, you like? wendy very likes candy, much sugar!' he said.

'sweet jesus!' i felt like columbus sighting land, i'd just discovered the real secret: so hidden the chinese didn't even know it was secret.

the meal was fantastic, especially the deep-fried tofu (another good secret). i've learned from dining at chinese restaurants - certainly not by my own cooking efforts - the art is to find a balance of flavors salty, sweet, sour, and bitter. a balance, or middle way, emblematic of chinese philosophies through the ages, from confucianism to buddhism. a balance that, with the ascendance of maoist-industrial-capitalism, seems to have been lost.

hopefully it's not too late to get it back: maybe a bit more sugar would help? or maybe less?

jackpot

this probably happens all the time, but in my years of metro travel, it had never occurred quite like this: on tuesday morning, i fish out the rail ticket from my jacket pocket, hobble up to the turnstile and feed it in. at that very moment a person on my right walks up, and an even faster woman to my left does the same. all three of our cards pop up simultaneously, we take them out in unison, and enter the metro. no big deal, certainly, but it felt just a little bit remarkable, like a tiny slot machine with triple cherries. i start humming, and singing 'oh what a beautiful morning...' it actually doesn't take even half that to set such a song to my lips.

even half that. but of course, so many moments pass me by, i close off to their invitation. splendor, beauty, climax - these are the easy ones. not that we catch all of them - for long. but the little ones, they are the miracles we are likelier to miss: stirring some orange blossom honey into a steaming cup of green tea in the morning. where am i? more than likely going over my plans for the day, maybe listening to the radio, or regretting what i said to my teenager last night, or to a friend a decade ago, or any number of things that take me from right now. the everyday, the quotidian, how could we miss it? and why would we even want to be present for it? of course sometimes there is wisdom in making plans, or going over lessons learned from past mistakes. or getting lost in a good book. but the seemingly endless chatter can overcome our days, and block out the miracle of touching in. maybe to a loved one. 'i'm busy right now,' we might tell a child, and certainly there are times when this is undeniably so. however, i think i fall into that mode of shutting out the present, almost as a default. opening up to it, that is the path to freedom as i understand it. is it a path as thin as maugham's razor's edge? or is it, as the wise men say, our birthright, just what we are designed to be? our beginner's mind, our buddha nature? can we fall into that, right now, sitting at this keyboard, ignoring the growing need to take a potty break?

[back from the bathroom...]

back to tuesday: on my way home from lunch with my niece and sister, i ride the local circulator bus from the metro stop. i see miller walking down the street - a first - as he does each afternoon from the city bus stop at the same station. just as i step off my bus, i see eli go in the front of the apartment building in front of me, as miller approaches from my right. the three of us ride the elevator up together, another first on this day.

who wouldn't notice that?

warm fusion

had my monthly infusion this morning; only one needle prick, not much pain.  

sometimes, no usually, i find it helpful to breath into the pain, be fully present to it just as it is.  don't proliferate the stories of 'why me?', 'not this again,' etc.  a friend likened such an approach to what she had learned in lamaze class, and has found helpful through the years.  this morning however, i was busy telling the nurse about my chapulines (grasshoppers) from last weekend.  my girlfriend says, of our valentine's dinner, she had tapas, and i had 'hoppas.

toward the middle of my three and a half hour sit by the iv pole, my roommate arrives as i doze.  i 'roll' over, mindful of the iv line, to say hello, and try unsuccessfully to fall back to sleep.  attractive woman in her late fifties (our privacy in these and other matters is, at best, negotiable:  she is asked 'is this - something something 1951 - your birthday?', a question we all must answer to identify the small bladder of drug as correctly intended for us); she is slight, has sandy blond shoulder length hair, a dash of long white bang, maybe an inch wide, flowing over her left ear.  her eyes are strikingly blue - i imagine they are contact lenses.  (because i'm a guy, i have no idea what she was wearing.  the latent writer in me could make something up, something with symbolic significance, essential to this narrative.  however, i've no idea where this will lead, what might add to it, what might foreshadow a denouement.)

becky is about as 'ms-ed up' as me, twelve or so years since diagnosis.  we exchange preliminaries, and fall into something of an infusion rapport.  we each have an ongoing relationship with each of the nurses, exchanging family stories and updates each visit.  in the eighteen or so months i've been on this designer drug - tysabri, an incredibly expensive elixir, thankfully covered by insurance - i've never sat down with the same roommate twice.  there is generally a sympatico feeling, given the same leaking boat we are paddling, maybe we bale with a teaspoon from time to time, or a bucket when we can.  she had a copy of the book, the giver, and several copies of individual school pictures of her middle school aged daughter (she planned to label each of them for delivery to extended family.  this was my moment to note the lack of a person to do such a thing in my household.  the few pictures i get go in a box for each boy.)   she asks me 'can i share something with you?  it's kind of personal.'  i'm not sure what to think, but what have i got to lose?

(time out, the soundtrack i am sam is playing on the cd player, it moves me, sort of fusing with this fusion tale.  'once there was a way to get back home...

 sleep pretty darling, do not cry, and i will sing a lullaby...'  okay, time out's over, pardonne-moi.)

she reads to me from a hand-scrawled passage on the back of a missal or newsletter.  her daughter had written it during church sitting next to her dad.  presumably happily married, becky does not attend these services with her husband - it's a 'long story' i'm told (i think i have experience with such stories).  the passage cites how her mom views her ms as a gift, the opportunity it has afforded her to slow down and smell the roses.  it was a touching tribute to and approbation of her mom.  i don't think to myself, 'gosh, wish i had a daughter.'  (no, i have been there before:  i used to joke with loret that we'd had a daughter for nine months until miller was born.)  the passage at one point refers to the sort of society described in the giver: as i understand it a place that has no disease, war, famine, or death (only a euphemistic 'passing' or some such thing - i've never read it, only heard various reviews from my middle school progeny - most recently from miller, who was fascinated by the book, and was paired with malia at school for a debate over euthanasia, in the context of the book).  the passage suggests, as does the book, that in seeking a world free of the bad, the darkest of dystopias can result.  it is only through loss that we can feel the fullness of life, etc.  'the giver' in the book is a person who tells 'the listener,' i think, all about the past with its attendant vicissitudes and tragedies - likely of the twentieth century - such that they may be avoided in the future, but nobody else has to hear this bummer-drag history stuff.  i could hear myself in the passage, and thanked becky for sharing it.  

i think we all try to create our own utopias, pushing away the bad, holding onto the good.  it is as close to human nature as i can imagine.  this hurts, so i will take my foot out of the fire.  or, this doughnut tastes good, i will have another box of them.  but the reality is that loss and pain - so much of the bad stuff - are often unavoidable.  and even the good stuff, when we overindulge, or try to cling to it as it slips through our fingers, will lead to suffering. 

to be with what is, this moment - a needle stuck in the arm, an interesting infusion partner (or the one a couple months ago who vomited into the trash can on the floor between us, and was sent home) - right now, like it or not, is what your whole life has led to:  can we open the door, accept the invitation to be present?  is it sad?  cry your eyes out.  is it absurd?  laugh them dry.  is it both?  lose yourself in the mystery.  because here's the thing:  this is it, there is no tomorrow or yesterday, only right now.  

the ancient hindus called the original being before the universe atman - that which unfolded over the millennia to become, to evolve into - time, space, light, dark, dog, cat, you, me.  not unlike modern physicists' concept of 'singularity' before the big bang.  in german, atmen means 'to breathe.'  

as you read this last word - for it is growing late - take a deep breath:  and feel the presence of god.