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seventh new york-iversary

Wednesday, March 20th, 2013

this past sunday marked seven years since i arrived in brooklyn. a love supreme was playing as my dad and i drove over the george washington bridge. the empire state building was lit green for st. patrick’s day. i was already missing minnesota and the comforts of home, and i was broken-hearted after an amicable and expected but nonetheless sad breakup. i wept and listened to sufjan stevens’ chicago:

i drove to new york
in the van, with my friend
we slept in parking lots
i don’t mind, i don’t mind

i was in love with the place
in my mind, in my mind
i made a lot of mistakes
in my mind, in my mind

march, contrary to poetic postulations, is truly the cruelest month, with biting wind rustling budding trees and wintry santorum spitting on pale sad-eyed bundles that once were happy people; even in march, when i miss california tremendously, the most, when the blooming tropical trees and the eucalyptus and bay leaves call to me: i’m still glad to be here.

a year into my time here, i was living the dream. i moved to new york hoping to work at the intersection of music, health care and african development – emphasis on hoping, because let’s face it, that’s an awfully narrow field. and somehow within weeks i went for what i thought would be an informational interview at the red hot organization and was offered a part-time position on the spot, working for a music label that produces compilations (amazing ones at that, e.g.) to raise funds for AIDS support organizations worldwide. um, what? obviously i was meant to be here, at that particular moment to do that particular work. and on the side, i put in my time between the sticks.

i was a wealthy drunk. bartending at magnetic field, a small rock n roll bar, was lucrative. a staff of one = no payouts. the pitcher full of dollar bills was my lifeblood. that, and scotch. but the true value of my time at magnetic field was the powerful and long-lasting connections to a deeply dedicated and supportive community. new york can be a tough town, and though i moved here knowing a handful of friends, i can’t imagine, i literally cannot imagine the course of my life without magnetic field and its denizens. along with seriously close friends and a seriously damaged liver, the bar brought kathryn into my life, which is (other than the gift of life, word to my moms & pops) is the greatest gift i’ve ever received.

a year in, and i was settled into my routine, working a couple days a week in my uber-fancy soho office, dining and drinking and sleeping my way around the city.

so it’s march 17th, 2007. a few days previous, i’d written on my old and sadly neglected blog:

do we take care of the people in our lives? do we care of ourselves? do you feel like you’ve done all you can to create positive forces in your life and in the lives of others? well, i’ve tended not to over the past couple years and it’s time for that to change.

let’s imagine, hypothetically, that we met that day, let’s say we went out to brunch, and you looked into my tea leaves and cast your i-ching sticks and threw a mean tarot and you predicted my future.

if you’d sat me down six years ago and said, in a few short years you’ll stop bartending and give up drinking, i would have laughed. i would have laughed heartily and ordered another bloody mary.

if you’d sat me down six years ago and said, in a few short years you’ll be married to the woman of your dreams, i would have been skeptical and amused.

if you’d sat me down six years ago, stared at the tarot cards in horror, saw the black dog in my tea, looked up from casting your sticks with a heavy sigh and said:

prepare yourself, because soon
you’ll be asked to endure years of agonizing surgeries
round after round after round of toxic treatment
side effects may include but are by no means limited to
loss of hairappetitesexdrivestabilityemploymentbodypartshappiness
also loss of life

you will lose count of the doctors and nurses and specialists for your braineyesshoulderhandsliverstomachkneefeet
not to mention the infectious diseases doc, you’ll need one of those
you will know nurses by name in the emergency room
and in the outpatient unit
and in the post-aenesthetic care unit
and on the oncology floor
you will have doctors, plural, on speed dial
you will lose count of the hours spent on hold
with insurance companies, hospitals, billing reps and collection agencies
there will be mountains of paperwork and towering spires of bills

you will make friends, friends who know your path
friends who share your pain and fear
and you will watch them die
withering away like a whittled stick, cut down to nothing

you will lose count of the thousands of needles that pierce your skin
colonoscopies will be old hat
same for highly radioactive scans
same for swallowing pills
same for swallowing pills that are cameras

listen, soon you will find yourself at 28 years old
you will be 28 and you will have cancer
and it’s serious, it’s bad
it’s in your lymph nodes (and you will learn what a lymph node is)
some people last weeks, months if they’re lucky
that the five-year survival rate for your diagnosis is eight percent

if you’d sat me down six years ago and said all this:

i would have been terrified. quite reasonably, i think.

but -

if you’d sat me down six years ago and said:

the path you will walk won’t be easy
no, it will in fact be incredibly hard
the most difficult thing you’ve ever done

but down that path, though it is quite far, and treacherous,
there is a new you
a better friendhusbandloverbrotherson
with more compassion and empathy
with a deeper sense of purpose
with a greater respect for life
you will love more strongly
you will listen more carefully

you will take care of the people in your life
you will take care of yourself
you will do all you can to create positive forces in your life and the lives of others.

if you’d sat me down six years ago and said, in order to become the person you were meant to be, you’ll have to go through hell. there will be blood, and pain, and sacrifice, and loss, but you will be alive, and you will be in love, and you will be loved:

would i have chosen to walk the path?
would i hesitate?
if i knew in no uncertain terms that the cancer would kill me, and soon, would i force the issue? would i ask modern medicine to prolong my life, and possibly prolong my suffering, and the attendant suffering of those i love and those who love me?

i would – though i understand and respect those who make the choice to live treatment-free for as long as they’re able.

if you’d sat me down six years ago and said, in 2013 you will be a budding abstract painter, i would answered your survey by filling bubble number five, for strongly disagree.

but here i am, and here we are, and, to finish off this obnoxiously long and winding post, here is this:

you might remember that i entered a cancer art contest last year – though my submission (“hand in hand” – click to jog your memory) didn’t win (a travesty!), it was still a valuable exercise, and i’ve had two requests so far to recreate it. today i delivered “hand in hand III,” a gift to my excellent pain management doctor. i’d never worked on such a large scale before – the canvas is 48″ x 60″, 4 feet by 5 feet. i made sure to take some pictures before i brought it to the office (in a hired van, as it wouldn’t come close to fitting through the subway turnstiles). see below and click to embiggen. i have another eight (!!) outstanding commissions.

i’m glad i chose new york.

hand in hand III

Posted in art, chemotherapy, clinical trials, complaining, gifts, gratitude, hospital visits, images, links, loss, love, melanoma, music, pain, painting, philosophizing, poetry, radiation, religion, rock and/or roll, sadness, skin cancer, tarot, weather | 7 Comments »

the kids are alright

Friday, January 11th, 2013

i haven’t posted as much recently, i know. it’s not just that this public place to discuss my disease seems less relevant now that my disease is under control – and will hopefully remain so for a long, long time. a few months ago, i wasn’t writing because i was in an awfully dark place, and it was difficult to share that. this wasn’t the only venue where that held true; i wouldn’t return phone calls or emails and i felt more or less dead to the world. it sucked. it truly and completely sucked, and i didn’t feel like i would ever be in a better place.

but now i have a much better reason for not posting regularly. my schedule is now predominantly spent caring for young children, and i couldn’t be happier. when i moved back to the bay after college, my godmother generously offered me a position as a full-time preschool teacher. i used to joke that my degree in political science was surprisingly relevant – conflict resolution, power dynamics and negotiation help greatly in successfully navigating the peaks and valleys of childcare. i helped to oversee the potty training of ten children (a fact which i still include on my professional resumé) and my urine-stained, poopy-smelling years with the kids were some of the happiest of my life – though the time was marred by my significant injuries after drunkenly stumbling off of a second story balcony. one day i threw my damaged back out while positioning mats for naptime, and the rest of the afternoon i was cared for by an army of preschool-aged nurses who brought me water and puzzles and books to read.

as i attempt a return to normalcy, i face the challenge of working with a body ravaged by surgery and treatment, one that will forever be immuno-compromised. no matter how diligently i care for myself, i’m going to get sick. i’m going to have days where fatigue and weakness limit my abilities and choices. i could be hospitalized at any time, and i still have regular appointments even as my obligations to see my oncologist become less frequent. a full-time job would be difficult, if not impossible, and i’ve spent very little of my professional life in that sort of setting.

just before christmas, i reached out to a handful of families letting them know i was available. and now i’m scheduled weekly with three families and a fourth in negotiation, with children aged two to eight. another joke i used while teaching preschool was that it gave me a chance to spend time with my emotional peers – while there are lots of ways i’m an old man (i play bridge, i enjoy scotch, i’m on social security, i own two canes), i like to think i’m still a child at heart. though i don’t have professional training or a degree in early childhood education, i’ve always been comfortable with kids. i was raised by ministers and from an early age was surrounded by children of all ages, and at age nine was gifted a new sibling (happy accident number three!).

given the intensity of the last few years – this coming april it’ll be five years since my diagnosis (what?!?) – it’s such a gift to be able to spend time with kids again. their sense of wonder with the world, the joy of discovery, the simplicity of their world; their marvelous minds are a restorative balm for my weary soul.

so if i haven’t posted in a while and you’re wondering what i’m doing: i’m probably playing hide-and-seek.

Posted in gifts, gratitude, music, pain, rock and/or roll, videos | 2 Comments »

the turning of the year

Friday, January 4th, 2013

it’s 2013. the future is now, i guess. i don’t know about you, but i think the mayans were on to something. not the doom of december (which was all mangled interpretation anyhow) but this past solstice being the terminus of one long cycle and the triumphant rise of a new way of being.

death tarot

it’s like the death card in the tarot deck – it doesn’t mean that you’re going to die tomorrow. it’s all about change, moving from one state to another. that sort of growth doesn’t come without pain and sacrifice, but with enough patience and determination, transformation is achievable. the fields must be reaped before the seeds of next year can grow. after a difficult year (albeit one that *did* include, on an important personal level, my kicking cancer right in the groin) i’m feeling especially hopeful that my own demons have met their end.

and now it’s time to move on.

i sat down ready to tell you all about christmas, but oops, death. let me get back on point.

kathryn and i spent a marvelous week in minnesota with my family. my whole immediate family joined the fun, one sister with her husband and one sister sadly without her boyfriend. we enjoyed a couple days in the twin cities, which gave us time to meet the two newest additions to my extended family (kaius and maya! they’re adorable, obviously). we also attended two of the five (five!) christmas eve services at unity church – it’s always such a powerful experience to be in the embrace of the church community there. they’re so loving and supportive of our whole family (and, as i’m well aware, are among my most dedicated readers). it was such a treat to see the new construction – they’ve made some dramatic changes to much of the church, and it looks and feels welcoming, open and warm. i know many of you were deeply involved in the planning and development of the project, and you should all be most proud.

our brief visit to unity also gave me time to deliver my recently completed commission for a member of unity. this painting was a struggle – my initial version wasn’t right, as both the buyer and i agreed, and my changes to it didn’t work either. so i re-gessoed the canvas and started fresh, and the final product ended up being a complete departure from my first attempt, and, ultimately, much more successful (at least *i* think so). the first draft is on the left; the last, “bohemian waxwing” is on the right. you can click to embiggen, though i apologize for the poor-ish quality – these will have to do until i have time to go through some of my pictures.

first draft     bohemian waxwing

my painting work has taken off recently, and i have a backlog of a half-dozen commissions that i’m itching to get started. i’ll be in the studio tomorrow, and i’m planning on spending some significant time next week putting together a website for my art. i’ll be sure to post it here (and on facebook, and email it to everyone i know) once it’s ready.

again, i’ve veered off topic. back to christmas.

after the pageantry of christmas eve (i have some adorable pictures of toddlers dressed as cherubs) we spent the morning exchanging gifts and wishing that my missing sister and her husband would show up from austin already – their flight that night was canceled and they ended up coming the morning after. still, i have no problem with multiple sessions of present-opening. over the past few years, it’s become traditional for our family to try and give as much as possible that’s created by hand (though, as hannah likes to point out, ipads are made by hands – unhappy hands, but hands nonetheless). jessie made a batch of gorgeous new stockings, mine adorned with poppies and a palette of paint, kathryn’s with crafting supplies, along with holiday-themed loveliness. we traded pictures and art honoring the memory of our dearly departed dog maggie.

luckily the delays in our gathering together didn’t prevent us from spending the rest of the week up north at our beloved cabin in the chippewa national forest. it was cold – dipping below zero at night – but that didn’t stop us from dashing to the hot tub each night. we ate like kings – roasted duck pizza, pulled pork, lots of bacon. we played games. we played music. we laughed. we watched old kevin kline movies on vhs. we walked on freshly fallen snow across a frozen lake.

it was perfect.

Posted in art, events, gifts, gratitude, images, loss, love, music, painting, religion, tarot, travel | Comments Off

haunted

Monday, October 22nd, 2012

last night i lay in bed, sleepless at far too late an hour, thinking about how and what to share with you. the last couple weeks have been extraordinarily difficult, and i was trying to figure out the best word to describe how i’ve been feeling. haunted seems about right, and seasonally appropriate to boot.

today should be a day of joy and celebration, as kathryn and i are marking what we call our “second first” anniversary. since we were married initially at city hall, we now have two anniversaries, and if living with cancer has taught me anything, it’s to celebrate at every possible opportunity.  that weekend in swannanoa was so very special, and tonight we’re going to try and recreate the glorious dinner from our wedding reception a la asheville’s famous corner kitchen : pecan-crusted trout, ginger mashed sweet potatoes and southern-style green beans. i’m sure those of you who joined us for those magical days in the blue ridge will be wistful at the mention of the food. last night i gave kathryn what has become a traditional gift of a custom designed crossword, with clues from our lives together. for instance, general from a great broadway show and/or my favorite way to be? answer: buttnaked. (he’s in the book of mormon. the play, not the book. obviously.)

and while i awoke feeling upbeat about the day to come, that hasn’t happened in a while. instead, the norm these days is for me to rise with dread and anxiety tied up inside me like a gordian knot. i look at the stack of unpaid bills threatening me from the desk. i consider the empty bank account that holds no answers. i’m haunted by my mistakes, my failures. mostly, though, i think about these endless numbered days that i’ve wasted. i have a tendency, when things get overwhelming, to become utterly paralyzed, to a crippling pathological level. instead of chipping away, bit by bit, like i know i should, i turn my back on my responsibilities for another day, play video games, watch cartoons, do anything other than anything. i feel like a lost child. i literally spend hours upon hours doing nothing, wishing so dearly that i was doing something. my short, mid and long term to-do lists seem to epically undoable that it puts me into a tailspin of crushing depression.

and what haunts me is that i’ve brought it on myself. naturally, i’m conscious of cancer’s destructive power, and i still have a lot of recovering to do. i’m miraculously, wondrously free of disease, and that is a great and powerful gift – but i feel like the treatments and pain pills have melted my brain, irradiating whatever neurons promote focus, dedication, motivation, responsibility. and sure, this past week i’ve been sick, and struggling with a meandering migraine. but that happens all the time, and they’re easy excuses i can use to tell myself it’s ok to make no effort. there are definitely days where it’s necessary for me to shut down. after all the surgeries and poisons i’ve endured, my body has become a fragile thing. i don’t plan on returning to traditional full-time employment – i’d burn through a year of sick days in a few months – and i’ve set my life up in such a way that i’m able to have lots of down time. but that’s all it’s been recently: time that i’m down. i’ve tried a handful of more regular jobs and watched in helpless horror as i sabotaged my efforts again and again.

kathryn is working as hard as she ever has, and that’s saying a lot. she’s halfway through a stretch of twelve workdays in a row. that’s just cruel. i have a hard time reconciling my own lack of productivity, career-wise or other-, with the ways that she sacrifices herself to care for me, not to mention the continued support provided by you, my generous and caring community. it’s an incredible privilege to have the life that i do, to have nothing but free time – my life itself is a privilege, given my initially grim prognosis. and i’ll bet lots of you would give anything to not have a day job. i should be taking advantage, out wandering this unparalleled city, visiting museums, enjoying the fall, or at least writing songs, or making art, or sifting through years of disorganized pictures and music, but instead i pace my room, tortured from the outside by the multi-year construction project across the street and tortured from the inside by my own self-loathing. i wish i could say i’m trying my best; instead, i’m simply not trying at all. i have serious issues with being too hard on myself – it’s a major topic in my conversations with my counselor at cancercare, but if you’d just spent a week (/month/year) ignoring all your responsibilities and escaping into passive, mindless entertainment, you might be a bit critical too. sarah and i are talking again today, and i’m planning on seeing my psychiatrist to discuss upping my anti-depressants. at this point, i’d try just about anything to break this vicious, destructive, infuriating cycle.

i apologize for starting the week off in such a brutal manner. i know that diary entries like this aren’t exactly pleasant reading, but i’m hoping that being honest here will keep me on track moving forward. i don’t want to feel the way that i do; i don’t want to spend another listless, atrophied day like so many before. when i get into bed each night, as i toss and turn and grapple with demons into the wee hours, i promise myself that tomorrow will be different, that tomorrow is another day.

and, as the beatles, here in bizarre and somewhat offensive cartoon fashion, remind us:

tomorrow never knows.

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Posted in cancercare, chemotherapy, complaining, gifts, gratitude, language, links, migraines, music, pain, philosophizing, radiation, rock and/or roll, sadness, therapy, videos | 3 Comments »

the power of love.

Monday, August 20th, 2012

i’m not embarrassed to say that the power of love by huey lewis (and, of course, the news) used to be one of my favorites. i even thought i could pull it off as at karaoke – it was the first time i’d gone out on the town after my first surgery back in 2008, and it turns out i wasn’t quite ready to be on stage. i traded my crutches for a mic stand, and, as it turns out, the mic stand provided far less support than i needed. about a third of the way through the song, i tried to pull off a little rock star lean move and ended up collapsing on the monitors at my feet. it wasn’t very fun.

i don’t like that song anymore.

still: that doesn’t make love any less powerful.

these past two weeks on the road have reminded me so dramatically of the true and real power of love. i have about a thousand pictures and a dozen clips of video to sort through once i’m home, but even that mess of media won’t effectively convey the wondrous love that i’ve been lucky enough to witness on this trip. so i thought i would put together a nice long post to attempt to explain how lucky i’ve been to be a part of so much incredible, deep, and meaningful love.

it’s been painful and frustrating to participate in such magical times without my special lady – she’s been in brooklyn while i’ve been touring the west coast – but we’ve maxed out our credit and someone has to be the breadwinner. i miss her terribly. my friend ameet and i are on the same redeye flight back to JFK tonight – we land at 6 am, blech – so i’ll at least be able to give her a kiss before she heads off to work. then i’ll be home for five days before i leave. again. this time i’ll be close, just up in the catskills – i’m taking over shuttle duties to get my neighbor’s kids to summer camp. once they’re on the bus, i’ll have eight hours of uninterrupted stillness in the woods, so i’m loading up their car with as many canvases as i can fit and/or afford. *ps – if you’ve been thinking about commissioning a painting, this week would be a great time to start that conversation! i’ll be painting all through next week.

it’s been nice to take a break from posting, but now i have a lot of catching up to do. for those of you in the mood to read, here’s a recap of my travels as they wind down and i prepare to hit the ground running back in new york.

first it was back home to the bay. and yes, it still feels like home, or a home at least, though more than two years have passed since i last felt those soft breezes and marveled at the lush tropical gardens i took for granted all those years. my first morning in san francisco i woke to the best alarm there is: a smiling baby. the lovely and talented annie bacon is a new(ish) mother, and this was my first time getting to cradle her deliciously adorable child. his smile contains multitudes. i changed his diaper. it was great.

i saw my godparents and my godsiblings. i spent a night sleeping next door to the preschool where i used to work, and i basked in the steady flow of memories of snack time and fingerpainting and reading stories and playing in the sandbox. i made cocktails (not for the preschoolers). i made milkshakes (ditto). there was much rejoicing. my godparents laila and dan live with their families in a wonderful sort of semi-communal compound filled with people who watched me grow up, and it was lovely to spend an evening with their community. evenings like that one make me yearn for the bay.

of course, the traffic going back and forth to visit my grandmother made me remember that it’s not all glowing poppies and patio parties. the bay has long outgrown its infrastructure, and though obviously new york is not a quiet and calm city, i still remember the oakland and berkeley of my childhood. it’s not the same.

my grandmother, though, has barely changed at all, and has managed the transition into assisted living with grace and courage. of course there was lots of initial resistance, but she’s happy in her new living situation, and i can see why. the kensington is a vibrant community of seniors with a staff that appears to genuinely care for their residents. i happened to glance at a schedule on my way out the door and noticed that i was going to miss wii bowling and a communal viewing of jeopardy. that sounds awfully good to me, and when you throw in the bridge games and the unlimited ice cream, man, i might want to retire there myself. four scoops of strawberry with lunch? yes please.

my grandmother moved away from her family after she married my grandfather. when he passed away in 2010, it was the first time she’d ever lived alone. you can imagine the incredible challenge that would present at any age, much less for someone in her eighties. but now she’s thriving, even as her body and mind slowly fail her. she has multiple boyfriends. she dances the boogie every day. and she does everything she can to support me. i showed her my paintings and we talked about art and the wonders of finding new ways to see the world, no matter your age. she’s a special lady, and i hate being so far away from her. i know not all of her grandchildren have an easy relationship with her – she can get a bit judgy – but that doesn’t make it any less wonderful to be the recipient of her total and complete love.

and then, more love: a wedding in monte rio, an adorable little town that sits on a bend in the russian river. my friends brett and cindi were married surrounded by their friends and family just a few steps from the quiet babble of the passing river. of course, we couldn’t hear the gurgle over the crazed man playing drums (badly) and blasting his stereo out his open windows to deliberately attempt to ruin the wedding – something about weddings behind his house needing permits or something, and our repeated pleadings to stop fell on deaf and seemingly meth-riddled ears. but his insane rage wasn’t enough to spoil a perfect weekend of dips in the river, hot tubs at night, and conversations with many people whom i love deeply. selfishly, their wedding was a wonderful way to deepen my friendships with tons of folks i rarely get to see but care for immensely. we had a campfire and played beautiful music. we talked so late into the night that i lost my voice. one hotel was filled entirely by my friends with children, and i think the continental breakfast we shared surrounded by smiling babies was my favorite continental breakfast ever. i did my best to ruin our final hours in monte rio by backing a friend’s car into a telephone pole, but they were incredibly understanding, and once i’ve helped to pay their deductible, everything will be fine. still: boo.

from the bay, i made my way to oregon. i know, i’m exhausted just recounting all that i’ve managed to fit into these past two weeks! the first few days i spent with my sister and her husband at their newly purchased home. how exciting is that?!? it’s a beautiful space, with blossoming flowers of all varieties on every side and light streaming through every window. i’m super proud of them for managing to make a home for themselves. i’m also a bit jealous – my four years of cancer have put on hold my own lifelong relationship goals of house and family, and though kathryn and i adore our home in brooklyn, we yearn for a space to truly call our own. jess and andy are totally dedicated to making their home a place of warmth and joy and beauty, and though they’ve only lived there a few short months, it feels so natural for them to be there. i was excited to be the first family member to visit since their move, and i wish my energy hadn’t been so low as to prevent me from being able to help around the house. not that they need it, but i’ve had to just shut down a couple times on the trip, which is always frustrating – i’m right at the outer edge of what i can handle with all this travel, and as wonderful as it’s been, i am utterly exhausted. before a redeye. ugh.

jessie and i had a wonderful day trip to the oregon coast, and the drive to the beach gave us some time to really catch up and work on our adult relationship, which can be rocky sometimes. it’s hard to be present with each other when we’re so far away, and we can drift apart without meaning to – it happens. every time we have a chance to sit down and be present and honest with each other, i’m glad for the opportunity. both my sisters are totally unique individuals and are constantly a gift to me by their simply being a part of my life.

the weather cooperated – as it has nearly this entire trip – and jess and i meandered through small beach towns and walked on the sand and watched kites float through the blue sky and petted dogs and listened to the joyous shrieks of children playing in the waves. there’s something remarkable about looking out at the ocean; the endless horizon represents to me endless possibility, and at a time in my life that is filled with such tremendous potential, it was powerful to just sit quietly, staring at the sea.

and finally, i arrived at my last destination. my college roommate skippy and his new(ish) wife jess (not my sister) were married this weekend, and they invited me to officiate their ceremony. it was a great honor to be asked, and it gave me a chance to meditate deeply on the nature of love in our lives – thus this long, long post. next weekend will be the fifteen year anniversary of all of us meeting at vassar, and nearly all of us (we missed you, josh and sarah!!!) were here to celebrate together. skip and jess bought a house within weeks of jessie and andy, but this is so much more than a house. they moved 45 minutes north of portland and bought a farm! it’s hard to believe that all my friends and even family members are buying houses and raising, making or readying to make babies. the farm is a lovely handful of acres tucked away from the main road, with a true barn filled with miniature lambs and ducks and chickens. they worked tirelessly to prepare the property for the wedding, and the weekend couldn’t have been more perfect. they were married in the field behind their house, in front of a tree with a heart carved into the trunk. both families have lost important loved ones over the years, so there were many tears wept, both in joy and in remembrance. there were more songs around the campfire, another delicious wedding dinner, and tearful stories and toasts shared as we sat together at one very, very long table. i couldn’t be happier for the couple, and they couldn’t be more perfect for each other. they are deeply, truly in love. and that is a powerful thing.

and so, dear readers, to the few of you who’ve stayed with me through these past 2000-plus words (good lord!), thank you for sticking it out. i have to be honest; i don’t want to end this post in the way i must, but i think it’s important that i share this with you. last week i found a suspicious nodule near my bellybutton, just above the scar from my bowel resection. i hoped it was simply an extension of the scar tissue, but it feels just like all the other tumors have felt, and it’s grown rapidly since i found it. skippy’s mom is an ER nurse and i had her take a look – she agreed that it was most likely a recurrence. i’m seeing my oncologist on thursday and will hopefully know more then. regardless of what it may be and what surgeries or treatments i may face, i’m incredibly grateful to have these last few months free of treatment and (mostly) free from worry. given the extent and aggressive nature of my disease, these long breaks are such a gift, especially when they allow me to travel west and see so many and so much, to witness love on such a grand scale and to be a part of that love. even as i end this trip exhausted to the core, there’s something so spectacularly awesome – awesome in its most dramatically full sense, not just some awe, but lots and lots of awe – about being privileged to bear witness to public expressions of love and dedication. it’s a great reminder of how much i care for my own partner, and it makes me all the more grateful that she’s waiting for me at home with open arms and her loving heart.

i used this quote from jonathan safran foer in the service – it seems like an appropriate way to finish up this post. i love you.

I love you also means, I love you more than anyone loves you, or has loved you, or will live you, and also, I love you in a way that no one loves you, or has loved you, or will love you,and also, I love you in a way that I love no one else, and never have loved anyone else, and never will love anyone else.

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(ain’t that) good news

Monday, July 9th, 2012

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i can eat anything!

Tuesday, May 29th, 2012

i’m singing that to the tune of the reading rainbow theme song. because today my surgeon lifted all dietary restrictions! i’m going to ease into it, but as long as my tummy takes to its new-old diet, i’m planning on going to the new moorish/jewish-style tapas restaurant that just opened in the neighborhood.

the ability to eat fresh fruit and greens is only the tip of the iceberg lettuce of good news today.

first, the surgeon reported that the surgical margins were clean and clear of any melanoma. that’s great, great news, because it means there’s a good chance i’m completely cancer-free. wow, typing those words feels awfully strange. i’m extremely cautious in my optimism, as always, but there’s more reason than usual to be wary.

i’ve kept this news private (shockingly) for a while now, because i wanted to get as much information as i could before sharing. while looking into my hepatic health, an MRI showed a tiny (4 mm) lesion on the surface of my liver. it could be a number of things, and it could be unrelated to my cancer entirely. for now, we’re going to wait and see how it develops. even if the lesion does turn out to be melanoma, it’s not a major concern – treating cancer within the liver is remarkably quick and effective – it’s a single, localized outpatient procedure (radiofrequency ablation) that causes few side effects and little to no damage to the surrounding tissue. if you’re going to deal with cancerous tissue in your organs, your best bet is the liver. even a liver dealing with hepatitis can regenerate and heal itself. but, as i said, we’re not going there yet.

my oncologist is giving me the next month on full break to recover. my intestines are still inflamed from surgery and we want to make sure they’re fully healed before moving forward. also, my surgical site started leaking a bit last week, and cultures taken friday tested positive for enterobacter aerogenes, a bacteria similar to e. coli that lives in the GI tract and is a common hospital-acquired infection. i’m already on permanent antibiotics that are most likely keeping it at bay, but i’m in touch with my infectious diseases doctor and will likely start a course of something tomorrow.

so, great news all around! my dad is in town to help me celebrate, so we’re having a nice dinner (WITH SALAD!!) and heading off to see the avengers. awesome!

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the other side of sunday.

Monday, May 14th, 2012

that being monday. it’s late into the night, or early in the morning, depending on how you’re feeling. me, i’m feeling a bit insomniac-y. not too surprising, i’d say, given what the week holds in store.

the surgery is scheduled for friday, though i won’t know exactly what time it will take place until late thursday afternoon. last week i spent four hours in pre-surgical testing – reviewing my medical history takes an awfully long time – and the nurse practitioner warned me that recovery from bowel resection can often involve lengthy hospital stays for extended monitoring; a full week would not be unusual. that’s an awfully long time in the less-than-pleasant atmosphere of the 16th floor oncology unit, no matter how wonderful the nurses and attendants may be. and they are wonderful, kind and caring, but they still have to put me in a shared room (always a crapshoot) and give me shots of heparin to the belly at 5 am (always awful).

to add to the unpleasantness of this particular recovery, it’s likely that i’ll wake up from surgery with both a feeding tube and a catheter. they shouldn’t remain in place for more than a day post-procedure, but that doesn’t make that initial return to consciousness any less painful or uncomfortable. i’ve never had a feeding tube before, though i have suffered through a catheter. i can’t remember at the moment whether i’ve shared this story, but it’s worth repeating – after one of my many procedures, i was having terrible trouble urinating, and the nurses gave me an hour to pee or else they were going to reinsert the catheter with only a small dose of local anesthesia. how’s that for pressure? i was terrified of the possibility but struggled in vain. my parents and kathryn gathered at my bedside and began to sing songs about water. the beatles’ rain. the melodians’ rivers of babylon. did they sing row row row your boat? perhaps. i seem to remember the song that finally helped me fill that small plastic urinal was jimi hendrix’s may this be love [aka waterfall - sorry, the best clip i could find was daniel lanois' cover - still worth a listen]. hopefully i won’t need another making-water medley.

my surgeon is mostly sure that he can perform the procedure laparoscopically, though there’s a chance that my attempted bowel surgery a couple years back left behind scar tissue that could interfere. if the robots can’t find a way in, they’ll have to make a midline incision (don’t worry, the link just goes to a graph – but you can always image search it yourself if you’re feeling gruesome). i’d like to avoid the larger incision, obviously – getting opened up that way would dramatically increase my healing time as well as the amount of pain i’d suffer. when i wake up, tubed through various orifices, i’ll find out immediately what access strategy my surgical team utilized.

in the meantime, i’m doing my best to enjoy myself and stay as healthy as possible. i’ve started seeing a chiropractor whose office also offers massage and physical therapy in a single visit – even though their office is in midtown, it’s worth the trip. the physical therapy in particular is making a big difference in reducing my pain and increasing my flexibility and range of motion – the many surgeries to my left leg have made it markedly shorter than my right, causing all kinds of imbalance and pain. we’re working together to try and straighten me out again. i’ve also found an acupuncturist – i emailed him with my sob story and billy, quite generously, offered to see me for free, for as long as it’s helpful. generosity like that is so rare, and i’m incredibly touched that he is so willing to help out. if you’re looking for a brooklyn-based acupuncturist, billy is great! i doubt i’ll be able to stomach (ha!) the effort necessary for any of those treatments post-surgery, so i’ve got a busy week trying to cram it all in before friday.

my acupuncturist is not the only person for whom i am grateful – i’ve received so many heartfelt messages of support, donations and books to read and offers of visits, blenders and baby food cookbooks. kathryn found a site that automates the process of scheduling meals and visits for those in need (aka me!), and i’ll let you all know when i have it set up. i know it’s a less personal method of managing the ways that you can help, but man, you all love me so much! it’s helpful to be able to space out your support and not burden me or kathryn with constant planning. i know you all understand.

one last thing, if you’re still reading this over-long post: mother’s day has come and gone, but i want to take a quick moment to acknowledge moms. and not only my wonderful, dedicated mom, because she is the best – she’s coming to help out and hopefully get me home from the hospital after the weekend. but now, being in my early 30s, so many of my friends and peers have become mothers, and it is such a marvelous joy to see these young mothers, to celebrate with them, to be a part of their lives whenever possible. i would love to spend the summer traveling from family to family across the country – seeing beloved friends and their children i have yet to meet, dash in the tower especially; seeing godsisters and godchildren and nieces named mabel; the twins in arcata; babies in oakland, omak, charleston, austin. kathryn and i have had to delay our family planning plans; i have to be a full year free of any treatment before we think about it, and even then it’s more than likely that i’ve been sterilized by the years of chemical onslaught – i’m so grateful that my oncologist suggested a visit to a sperm bank before i started any treatment. in the meantime, it gives me such pleasure to join with you in celebrating the miracle that so many of you have brought into the world. well done, mothers of the world.

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my baby is on TV!

Thursday, March 29th, 2012

so remember how i sold my 1971 guild starfire hollow-body bass to alan hampton, the bass player for andrew bird? i told you about it a couple weeks back.

well guess what? she’s all souped up and has joined the band on tour! she made her televised debut on the jimmy fallon show tuesday evening. man she looks and sounds great. i’m so glad she has a better home – i would guess she was feeling bored just hanging on my wall.

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music for patience and/or patients

Wednesday, March 14th, 2012

i just can’t resist sharing more andrew bird. did i happen to mention that i sold my beautiful, battered bass guitar to his bassist? well i did. obviously andrew bird is a remarkable and uniquely skilled artist, but his new bass player/backing vocalist is supremely talented as well. i can’t imagine finding a more appropriate home for an instrument that’s even older than me. how far it has come since i found it in my parents’ basement!

the band was on the colbert report last night, and their performance of a second song was exclusive to the colbert nation site. the track is one of my favorites from the new album and they absolutely shred this gorgeous, hypnotic, congolese-influenced composition. as much as you can shred while whistling and playing the violin and glockenspiel.

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some people wake up on monday mornings…

Monday, February 27th, 2012

some people wake up on monday mornings
barring maelstroms and red flare warnings
with no explosions and no surprises
perform a series of exercises

yes, it’s more andrew bird, this time from a song called simple x. and it’s so very appropriate. it being monday morning already, as my insomnia continues unabated.

the concert was amazing. meeting the band was the icing on the cake (see below for photographic evidence). his new album, break it yourself, is breathtaking, and may even surpass armchair apocrypha as his best ever. and i say that after a single listen live. he even has a song, “the near-death-experience experience” that’s sort of about me. kinda.

dance like you’re a cancer survivor
like you’re happy to just be alive 

the bell house has played host to so many incredible, indelible moments in our lives. derby parties, already-married marriage proposals, karaoke kraziness, rowdy disney sing-a-longs and unforgettable concerts. though i haven’t been pounding the mats (that means bartending) in a while, i sometimes forget what an remarkable privilege it is to be a part of something so special. *this* is why i moved to new york city.

i know many of you don’t check groinstrong regularly, and especially not on the weekends. and that’s just fine! i almost never post over the weekend. but since monday morning is upon us (and you sure look fine), i thought i would reiterate what i expressed on saturday.

lemme tell ya, time tough.

earlier this month, i received a year’s worth of bills from NYU in a single mailing. as far as i understand it, when you see a doctor that isn’t in private practice, they’re actually leasing space from the hospital. and as you might imagine, their rent is astronomical. so part of that expense is transferred to the patient as a “facility charge.” yeah, that’s totally separate from the visit co-pay. my insurance helps with the fees, but it doesn’t pay for all of it. i usually get the facility charges every few months, and i thought maybe being in a clinical trial had exempted me, since i hadn’t seen that particular kind of bill in a long time.

no such luck. on saturday morning, i sat down to the stack of bills and realized that i just couldn’t pull this one off on my own, or even with kathryn’s help. and by may, both our respective parents will have helped to finance two weddings. each. as in four weddings and (thankfully) no funerals. so it doesn’t feel right to ask them, at least for the moment. they have their own battles to fight, and win, and they must persevere, and be anklestrong.

so that is why, on saturday, i decided to ask for help. from all of you.

i wish that i wasn’t in a place where i have to ask, but over these past four years (!!!) since my diagnosis, i’ve learned the importance of swallowing my significant pride and asking for help when it is necessary. it makes it easier to ask knowing how much you all care. and within 12 hours of my rare saturday morning post, your donations exceeded $500. and the best part is, they’re just a few dollars here and there. a five spot. an andrew jackson or two. but my goodness do they add up quickly. they’ve continued to come in from across the country, and i figure by the end of this week, that, with your generous support, i’ll have all my medical bills paid off, and a bit to hold onto (i should probably just give it to kathryn) for when the next fat envelope arrives from the cancer center. any gift, small or large, makes a big difference to me. i exist right at the margins of bankruptcy, and if kathryn’s job wasn’t so stable, and if we didn’t have such a wonderful, remarkable community that supports and sustains us in so many ways, it’s entirely possible we’d be living in a basement on summit avenue. as in my parents’ basement.

so: thank you for keeping me and my wife out of my parents’ basement.

your support means the world to us both.

the easiest way to send your gift is either paypal or chase quickpay to jonah.ei@gmail.com. you can also send me snail mail (always appreciated, even without checks inside!) to 287 sackett street / brooklyn, ny / 11231.


thank you so much in advance for whatever support you’re able to provide. please accept our deepest gratitude for all the gifts you share.

also: this is my song, for the asking:

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dark matter

Saturday, February 25th, 2012

a rare saturday post! i cannot contain my excitement at the fact that andrew bird, one of our absolute favorite artists and kathryn’s choreography muse, is playing a secret show at the bell house tonight. it’s big news, since he’s sold out radio city, the beacon and even carnegie hall. he moved to brooklyn last year and we’ve been waiting to play on our home turf. he has a new album coming out next week, so i’m guessing he wants to try out the new material before his tour. if you don’t know andrew bird, i highly recommend him. he’s a multi-instrumentalist and world champion whistler. start with his album armchair apocrypha. as one youtube commenter puts it so well (disregarding the comma splicing): Hold tight, this is half storylike plot, half science, half philosophy and best of all the most articulate piece of music, this guy is the most interesting personality in the show-biz world able to rhyme every freaking science in his own world to make his music up composing them whistling and playing violin. one of my many favorite songs on the album is called dark matter (here’s an mp3 you can download and here’s an incredible live version from the art institute of chicago that starts with a story about him touching a rembrandt.

but that is not the dark matter i intend to discuss, though it is indeed a lovely song.

no; this is subject matter that is dark.

i’m not totally comfortable doing this. but my medical bills have gotten to a point that kathryn and i can’t quite manage. a few weeks back i unexpectedly received a year’s worth of bills all at once – the pressure from that massive stack led, in part, to my nervous breakdown. due to paperwork errors, our flex spending account has been suspended, which took away my ability to pay it forward and then reimburse the account as needed.

so i’ve come to you, my dear, dear readers, to ask for a bit of help. there are so many of you at this point that even if you each donated $5 to my medical bills, they would disappear, at least for now. i’ve survived these last four years so dependent on the largesse of others, and i’m tired of needing to ask. but my exhaustion at asking doesn’t pay the bills.

the easiest way for you to help is via paypal or chase quickpay – my email is jonah.ei@gmail.com. if you’d like to send something in the mail, please email me and i’ll send you our address.

in advance, thank you from the bottom of my heart.

a noose is loosed around our necks made of DNA
and every day it’s growing tighter no matter what they do or say
and you can shoot right through it with rays of dark matter
just before they kick out the ladder
with rays of dark matter
like something catching fire

do you wonder where the self resides?
is it in your head or between your sides?
and who will be the one who will decide
its true location?

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the manhattan bridge club

Thursday, February 23rd, 2012

well, that was certainly interesting. i didn’t play terribly, and mostly our bidding miscommunications did us in – not surprising, given the newness of our partnership. but we scored a 43%, meaning we did better than 43% of the other teams playing. which really isn’t so bad for our first time playing together, especially considering it was an open game and we played against a former national champion. i did manage to bid and make a slam, which felt good.

i wish that someone would make a movie about competitive bridge. scrabble has its film of record, and i love the crossword documentary. jeff and i were discussing the possibility yesterday, and agreed that the problem is that the base knowledge necessary to understand the intricate drama of the game is perched so very high on a steep and long learning curve. still, there are enough characters to make for some interesting stories.

in the elevator ride up to the club, i met an elderly woman and safely assumed she was on her way to play. she said that she took many decades away from the game when she married her husband, “an artist who only liked the pretty designs on the cards.” in her retirement years, she’d returned to the game, to play with “other three hundred and seven year old ladies.” she spoke of a number of scandalous bridge divorces in her circle, and i mentioned the infamous bridge table murder. this is not a game to be taken lightly.

somehow i’d envisioned a hazy lounge with leather wingback chairs and felt tables. though the views from the 14th floor are dramatic, the club is just a converted office space with barely enough room to move between the tables. nothing glamorous at all. where are the butlers who bring scotch to the table at the ring of a silver bell?

still, the space belied the quality of play. one of the rounds, we played against the former national champion, whose partner misbid a high contract hand and an hour later was still not close to hearing the end of it. i feel his pain and am grateful for an understanding and forgiving partner, both in bridge and in marriage, now that i think about it.

the average age skewed towards 70, though jeff and i certainly brought it down a bit. one gentleman remarked on my pink bracelet, and when i explained the concept of groinstrong, he seemed intrigued and so i offered him the bracelet. he laughed. he said he hadn’t been groinstrong for some time, and his partner suggested perhaps the bracelet “would help with blood flow.” ew. and also: awesome.

people were, for the most part, extraordinarily friendly, though a few curmudgeons grumbled their way through the day, shushing dramatically when the conversation in the room rose above a library murmur. yeah, i’m not very good at being quiet. still learning the ropes of etiquette.

nearing the end of our three hour non-stop session, jeff said that i was doing well, and that if i was interested, he was looking for an alternate partner. the $23 per session fee is pretty steep for once-a-week card playing, but he said they could give me a discount, especially since it would mean some young blood in the club. i mentioned i could show them my social security statement, but i’m guessing that the vast majority of clubgoers are on fixed incomes of some sort.

it’s a curious side effect of cancer treatment; being a young person with a disease that tends toward old age, i’m used to spending long, quiet afternoons with seniors in a converted office space. i really do fit right in:

i tire easily.
i have a weekly AM/PM medication sorter.
i complain about my health constantly.
i own not one but two canes, one with a built-in seat.
i have a dozen medical professionals on speed dial.
i’m on social security and medicare.
i love single malt scotch (sadly, off limits at the moment).
i listen to classical music.
i wear dapper hats.
i own fifty-three neckties.
and i play bridge.

in college, at the height of the embarrassing spice girls phenomenon, my friends and i gave each other spice names.

mine?

naturally:

old spice.

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eventful, to say the least.

Monday, February 13th, 2012

my goodness, what a weekend.

i arrived at the first destination of kathryn’s birthday pub crawl-some/karaoke-tacular only to find her breathless and hopped up on adrenaline. two young, bumbling, desperate criminals had opened the door to our favorite local gastropub strong place, reached into kathryn’s purse and bolted with her billfold. their rustling was just enough to catch the attention of my lovely lady, and, noticing her missing wallet (which i bought her, because it’s covered in hearts and monkeys), she gave chase.

since i arrived after the pursuit, i can only imagine it looked something like this:

seems about right.

in their haste to escape the wrath of the enraged gazelle quickly closing the gap, they dropped the wallet without removing anything. a passerby attempted to grab one of the absconders and managed to come away with her winter coat. it’s all a bit sad, really. they seemed like a young couple, inexperienced and desperate for cash. and now they’re without a nice puffy jacket as we suffer through a few days of real winter. though the jacket is available for pickup at the 76th precinct!

yeah, so basically my wife is a badass. good thing, too. it’s not like i have any money in my wallet! i’ve reached a point that cancer experts call “financial toxicity” – pretty self-explanatory, really. thank god for our new flex spending account and our forthcoming tax rebate! wow, that article is sobering: “your chances of declaring bankruptcy quadruple within 5 years of a cancer diagnosis.” daaaang. good thing i can depend on the kindness of strangers. and friends.

and speaking of friends, i brought my little buddy TJ (tiny jonah) along for the ride. he was a huge hit at karaoke, except with the handful of people who hate puppets. even when they make similar fashion choices.

there are some wonderful pictures from the night taken by our friend tom – black and white can even make karaoke look classy!

man, we even look classy just sitting around. that fine lady in the middle is my uber-talented friend kirsten, who filmed video throughout the evening and is currently editing as we speak. oh man it’s going to be awesome! though the night looks a little different in color.

the weekend also brought sad news (other than whitney houston’s tragic passing). my mom fell and broke her ankle! like real, real bad. foot all mangled and bent the wrong way, three bones broken – she ended up spending her FIRST night in the hospital ever. a testament to the eller constitution that she’s never been hospitalized. it seems so commonplace to me now. but that doesn’t make it any fun. when you’re separated from all that you hold dear, you realize how important it is to be surrounded by what you love – the books, the art, musical instruments, the smells, the comfortable sensations that we call home – in the hospital, they’re all stripped away and traded for an IV drip and 5 am shots of heparin. though at the moment, with a backhoe 50 feet from my window tearing into the old concrete across the street, a quiet hospital bed with a view of the east river sounds a little pleasant.

but not that pleasant. love you mom!

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theraoke

Friday, February 10th, 2012

is there a better way to put a smile on one’s face than some live band karaoke to celebrate kathryn’s birthday?

answer: nope. it’s therapy. thus theraoke.

well, good. because that’s what we’re going to do tonight. after oysters at happy hour and thin crust pizza for dinner. mmmmm.

i finally took the time to get my pictures from florida posted. they’re on facebook but you can also view them here and below, though the tiny slideshow doesn’t do them much justice. enjoy!

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bad things

Thursday, September 22nd, 2011

troy davis has been executed, R.E.M. has broken up, and i am still in the hospital.

as of yesterday afternoon, it looked almost certain that the lengthy discharge process would begin in the wee hours of this morning, and i would be back home by noonish.

but things got complicated and (this amuses me greatly) *bent* out of shape. the alien head of my bruised and battered babymaker, in its twisted path, has swelled and curled in remarkable ways.  the initial swelling added a slight twist to the shaft-shape, leaving the head angled to the right at 45 degrees or so. but the twist has become so pronounced, and the swelling has grown so dramatically, that the soft angle has hardened (ha ha!) and the path of my most crucial man-part has begun to turn back on itself. it looks bad, but at least it works.

actually, that’s the problem. my stretched boxers now hold a shepherd’s crook, a candy cane, a question mark of pain. and that is *not* a good shape for a hose. that’s right, this is all my way of saying that last night my urinary tract swelled shut. ew. also: ouch. i tried everything i could – even inserting my pinkie into the tightly knit folds of skin and attempting to pry them open – before i broke down and had to bring up  the matter with my nurse. we decided that i would sleep on it – if i woke up still unable to pee, then we would have to install a catheter. after all the pain i’ve had to manage, that really would be the icing on the paincake. somehow i was able to sleep, even with the knowledge that the morning may hold a blinding, indescribable level of pain in the most sensitive part of a man’s body. (next to his ego.) (ha!)

but before the morning, the night.  i awoke at 4 am, thinking, wow, it is hot in here. and wet. i must have sweat through my clothes. and the sheets. and the blankets. and the I HAVE PEED IN MY BED. i hadn’t just peed the bed. it looked as if i had collected two days worth of pee in a bucket and poured it all over my sleeping self.

my friends: the indignity never ends.

still – it was an important release, as with the coming of morning i found myself once again able to fill the plastic urinals (i just found out they’re called hats – maybe because they cover the head?). and most importantly, i was able to avoid the mind-bottling pain of a catheter installation sans anesthetic. and i was able to restart the process of being sent home.

it turns out that, miraculously, the staff here is crafting my discharge papers. so i will finally get out of here! i have much more to share with you and hope to get to it soon – i can tell you all about the horror of dealing with an extremely impatient MRI technician and my excruciating meeting with a very hands-on urologist. also, i hope to go into greater detail about the disappointing MRI results that showed avascular necrosis, a bone decay linked to long-term steroid use and may have already caused a femoral fracture.

for now: freedom!

see you in brooklyn.

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sorry for the delay!

Monday, September 19th, 2011

when i look back at some of the early posts here, i’m amazed at the regularity of posting – four, five, seven times a day: “i’m waiting for my MRI” – “i’m halfway undressed for the MRI” – “ok we finished the MRI” – etc.

so i actually feel guilty that it’s so late in the afternoon – almost 4 pm even! – that i’m letting y’all know that i was hospitalized last night with yet another case of cellulitis (read more about this common skin infection here). this is my sixth diagnosis of cellulitis; usually i end up hospitalized, depending on the severity of the accompanying fevers and rash. over this last year, i added an infectious diseases expert to my ever-expanding medical team – she’s been a godsend, and after talking through this recent flareup, she’s decided that i should start a preemptive course of low dose daily antibiotics. a regimen of non-stop pills has its drawbacks – and i’m already at 10 medications a day.

but i’m SO done with looking down to see parts of my body bright red with inflammation, hotter by many degrees than the rest of my body, and swollen beyond recognition. and perhaps taking a daily antibiotic will help me avoid repeating my current hospital living situation – a shared *quad* room with one heavy duty snorer and one remarkably talented sleep shouter. not a sleep talker. a sleep shouter.

OHHH!!! WHAT DID YOU SAY? AAAH. WHAT DID YOU SAY??!? OHHHH MY ASS.

i think i figured out his favorite song…

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a whole knee-w world

Thursday, August 4th, 2011

i’m just back from my first post-op follow-up with my orthopedic surgeon. he showed me pictures of the inside of my reconstructed knee: simultaneously gross and intriguing. i have screws made of organic material in there! they’ll slowly dissolve as the knee strengthens. my x-ray looked like this:

crazy, right?

i also have a new brace that allows for limited motion. it’s not nearly as restrictive and discomfiting as the first one, which should help with the edema. my hobbit’s foot is looking much better, though it still aches and throbs with pain. after struggling with swelling for so long, i want to:

ah, the wonders of google image search never cease to amaze. though i would NOT recommend searching for lymphedema, unless you’re preparing for some seriously disgusting stuff.

the swelling isn’t nearly as painful as the knee though. leaving the house and heading into the city was a pretty strenuous effort, even with taking a cab back and forth. it’s been almost two weeks of being more or less stuck at home and i’m going a little stir crazy, but anything more than a walk to the corner store is too much right now. good thing i have a wonderful, caring wife. i’m so incredibly lucky to have such a loving spouse, not to mention a great group of folks who’ve provided much-needed meals and company both. thank you for being a friend!


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i heart ny

Tuesday, August 2nd, 2011

i woke up today feeling worn thin. beaten up, beaten down, stir crazy from 10 days stuck in my apartment, ready to escape this unwieldy brace, tired of pain, tired of limping from bed to chair to couch to bed to bathroom to chair and not much else.

BUT.

then i saw this story about a construction worker who feels bad for the impact of the construction, the noise and the dust and the detours. so he spends his lunch hour serenading the city, trading his hardhat for a microphone, broadcasting his dulcet tones out into the dusty streets.

and i smile.

i love this city.

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i know some remarkably talented people.

Monday, August 1st, 2011

you guys! the party was so amazing. you are all so talented. we had songs, and poems, and dancing, and backwards talking, and whistling, and games, and home movies, and babies played as instruments, and endless, incredible food. what a marvelous way to be entertained in my convalescence.

so i wrote a poem on saturday, as i’ve been trying to do. i shared it with the party to close out the evening. and my friend recorded it! here’s the video, and the text is below – you may want to open the video in a new window so you can read and watch. it’s sort of long. epic, even. enjoy.

 

 

In Vermont

 

In Vermont,

the sky is heavy with snow.

 

Do you know

that particular white light?

The one that tells a story in the sky.

The story goes like this:

It is going to snow.

 

Round midnight,

says the weatherman.

Tiresias of trade winds.

Oracle of overcast days.

Seer of squalls.

 

And so it is

at midnight

or thereabouts

the flakes find their way

down through the whiteness

of the sky

and fall

on Vermont.

 

Soon, the world is silent.

 

Do you know

that particular silence of falling snow?

The silence that demands attention.

The spectacular hush that quiets the world

and makes us pause in wonderment.

 

What’s that? You do know it? It’s lovely, isn’t it?

I agree.

Lovely.

 

Morning comes to Killington,

and with it, we discover

a mountain refuge transformed.

 

White is everywhere:

Whiter than a somewhat witty bumper sticker

on a Prius.

Whiter than a farmer’s market

in Portland.

Whiter than dressing all in white

like a goth in reverse.

Whiter than listening to Counting Crows

on your third generation white iPod

in your Prius, heavy with bumper stickers

on your way to a farmer’s market

in Portland

wearing all white.

 

And the stereo plays:
Step out the front door like a ghost into a fog

where no one notices the contrast of white on white.

 

You see what I did there?

 

We step out the front door

like ghosts

into

a world of white on white.

 

Look around you!

A gift from the heavens:

a foot of fresh powder.

Soft.

Luxurious.

Inviting.

Waiting to be caressed by waxed polyethylene.

 

The mountains beyond mountains

call to us, saying,

Get going, kids.

These slopes won’t ski themselves.

 

What choice do we have?

We must do as Andre the Giant so succinctly demands:

Obey.

 

We heed their clarion call

and head, as they say,

for the hills.

 

Suited up,

fully equipped,

be-goggled,

be-booted,

our tools of sport at the ready

we march towards destiny

also known

as the ski lift.

 

The chair scoops us up,

up,

and away.

The gentle embrace of steel

the mechanical hand of God

escorting us to the heavenly heights -

 

also known

as the bunny slope.

 

We are here, and alive,

and the freshly fallen snow calls to us.

 

We are Moses on the mountaintop,

manifesting the word of the Lord into stone.

 

We are Sir Edmund Hillary

planting the flag of empire

in the Tibetan aerie.

 

We are the featured subjects

of Warren Miller’s next film:

“Morning in Killington.”

Coming to theaters Winter, 2012.

 

 

The world between our skis

glides underneath us

we gaze through swirling flurries,

the last gasps of the midnight tempest.

 

Looming: the terminus.

Our skywards reverie comes to a close.

Gingerly,

we take our first ski-bound strides

testing the bindings,

tiptoeing on newfangled feet.

 

The mountains have called, and we have answered.

Our city lives – the chaos, the noise, the smells,

the daily battles we all must fight -

It all disappears, up here.

 

This is Sinai.

This is the Matterhorn.

This is Kilimanjaro.

This is Everest.

This is every mountain, everywhere.

 

A single push begins our descent.

Our party scatters down the groomed slope.

 

I steer one way, turning slightly on still unsteady legs.

I curve back across the pitch.

Heavenly.

 

Hmm, that’s actually

a little fast.

Maybe

if I just turn

a little more this way, and -

 

…

 

OH MY GOD!

OH MY GOD!

 

I find myself on the ground.

 

 

One hundred yards.

One hundred glorious yards.

The mountain has decided

that is all I get.

 

I am a twisted wreckage.

I am a pile of skis and pain.

My leg shouldn’t bend that way.

And what was that popping sound?

 

So,

I find myself

waiting for the ski patrol,

sitting on the snow;

snow, which seemed so gentle,

now become my nemesis.

 

I hate you, snow!

I curse you, mountain!

And to my skis:

I don’t much care for you either.

 

I am sitting on the snow,

growing colder,

railing against the inanimate objects

that have conspired against me.

 

There is much to be said

for the winter

in Vermont.

 

But at the moment,

 

all I can say

 

is

ouch.

 

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