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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

florida: we close at 9 pm.

Tuesday, December 11th, 2012

i’ve wanted since coming home to share with you stories from our weekend in florida. but i’ve been busy, which is a good thing and the system i use to post via email has stopped working. i didn’t realize how often i was writing on the train until i couldn’t any more.

the wedding was awesome. kathryn’s extended family is wonderful and so our their friends, and it was a delightful privilege to celebrate with them. the company was excellent, the setting was superb, great food, long dance party with a great playlist – can’t hope for much more! our hotel was right on the river and ibises grazed the grounds.

it was a quick turnaround, only to be down there from friday night to sunday mid-day, and it didn’t help that our flight home was caught in a holding pattern through rough weather. still, as louis C.K. points out, it’s hard to complain about the magic of a steel bird flying many miles up into the air and getting you safely to your destination 99.9% of the time. we were hours late, but it would have taken far, far longer on the bus. or walking.

i started this point some while ago this evening, and my description of our swimming with the manatees got totally out of hand. i’ll try to find time tomorrow to finish it up. because it was super, super amazing. we had an underwater camera and got a DVD of our trip, so i’ll post those eventually.

after many weeks of struggling mightily, i feel like i’ve turned a corner. this morning i started working with a close friend who, for many years, has offered his services as a personal trainer to help me rebuild my so very broken body. i’m sure i’ll be stiff tomorrow but it feels so good to be breaking a sweat (a light one, for now). almost every day this week i’m scheduled to spend time with kids, and that (in reasonable doses) is just about my favorite job. wait, i’m playing hide-and-seek and getting paid for it? today i brought my work home with me: a drawing from our 5-year-old neighbor dash, with a note to kathryn written inside a heart:

UR MY BEST NABR.

how great is that?

Posted in amazing, events, gratitude, love, travel | 1 Comment »

a tour of local damage

Tuesday, October 30th, 2012

we’re watching in dismay as reports continue to pour in of the devastation across the northeast. though we’re extraordinarily lucky to live on higher ground, just a few blocks away the scene is awfully messy. the gowanus canal breached its banks, and at the end of our street where it dead-ends at the canal, folks are pumping multiple feet of the toxic sludge out of their basements. the gowanus is one of the most polluted bodies of water in the nation, with active strains of syphilis, gonorrhea and carcinogenic heavy metals all present. a couple years back, a very lost minke whale (nicknamed “sludgie”) swam into the canal and dissolved. this is NOT the kind of water you want to be near, much less dealing with it invading your homes or offices. some close friends of ours have a production studio on the banks of the canal, and everything four feet and below is covered in slimy, oily residue.  luckily they were able to move out the most crucial and expensive equipment before the storm.

kathryn and i took a short walk through the neighborhood to get a sense of the damage. our block managed to keep all its trees in the ground, though there are a ton of fallen branches. one of the scaffoldings surrounding the construction site across the street collapsed in the middle of the night – at one point i heard an enormous, metallic crash which i assume was it falling down. the park down the street didn’t fare so well either, and has lost most of its largest, oldest trees. even though carroll gardens was mostly spared, there’s still a lot of cleanup yet to come. i can’t imagine how long it’s going to take for the city to recover from this historic storm. we’re not expecting the subway to open any time soon – i’ve heard rumors that the MTA might manage to start limited service by the weekend, but with major flooding in nearly all of the tunnels that travel under the rivers, it’s going to be a while. the images are startling, aren’t they? atlantic city devastated. NYU langone medical center, the hospital i know so well, evacuating its most critical patients amidst the worst of the storm after backups to the backup generators failed. cars floating down wall street. the entrance to the battery tunnel filled to street level. a whole neighborhood in queens burned to the ground. i’ve lived through a couple major natural disasters, in particular the 1989 loma prieta earthquake and the 1991 firestorm in the oakland hills. but i don’t think i’ve ever seen damage on such a widespread scale. it’s going to take weeks for the eastern seaboard to recover. if you’re near us in brooklyn and need assistance, please be in touch.

in the meantime, here are a few pictures of our neighborhood:

Posted in events, gratitude, images, loss, sadness, weather | 1 Comment »

we’re prepared!

Monday, October 29th, 2012

i spent this past weekend in the bay area for the wedding of one of oldest and most-dear friends from high school and his wonderful wife. it was a dia de los muertos-themed wedding, with skulls and death-related decorations making for quite a unique scene. we processed from the mills college student union to their gorgeous chapel, led by a 25 foot tall illuminated skeleton puppet. wow. it was a lovely weekend, absolutely worth maxing out my credit card and using the last of my savings to make the trip. i’m still close with many of my friends from high school, though we don’t get the chance to see each other as often as any of us would like. the weather was picture-perfect bay area fall, the company was of the highest caliber, and i even got to spend a day helping my grandmother run errands. if only my trip hadn’t been cut so short.

i apologize if i didn’t have a chance to visit with you during my time in the bay; i’d planned to return to brooklyn on tuesday. but mother nature has thrown down a dramatic gauntlet of a storm, and hurricane sandy is heading our way as i write. i managed to make it home, but only just – i got the last seat on a flight departing san francisco at 6:15 am yesterday morning, and arrived in new york a mere three hours before the total system-wide shutdown of the subway and the rest of regional transport. as lovely as it would have been to be stuck in the bay – many of the east coast residents attending the wedding now find themselves on extended vacations – i didn’t want kathryn to have to ride out the storm alone. her dance center is closed today (at minimum) and given that she’s just finished working twelve days in a row (!!), i wanted to take advantage of some quiet time together. i’m terribly jet-lagged after being on the west coast for only two-plus days, but i’m tremendously grateful that i was able to make it safely back to brooklyn.

we’ve yet to experience the worst of the storm, though i’ve heard already heard reports of flooding in nearby red hook and lower manhattan. our 150-year-old brownstone is at the top of a hill – we’re surrounded by potential evacuation areas but our neighborhood should be fine. we’re as ready as we can be, with candles and headlamps, plenty of water set aside and lots of food requiring minimal preparation. i’ll do my best to keep you all updated as the storm crawls across the northeast – of course, my laptop use will be limited if we lose power, and that looks to be a likely scenario. i hope those of you out here with us on the eastern seaboard stay safe and dry – if you do end up in trouble, our fortress of a house is absolutely available as refuge. i think a candle-lit evening of apples to apples sounds pretty good to me!

Posted in events, love, travel, weather | Comments Off

sailing for hope [updated with working link!]

Friday, October 5th, 2012

remember how i suggested you all like caribou coffee’s amy’s blend on facebook so they’d donate to cancercare? well, i’ve got another reason to like cancercare – they’re taking me sailing on a tallship today! i think they’ve invited me to be a media darling, a role i relish with glee. also: sailing on a tallship! i’ll be posting more about the amy’s blend campaign on monday.

in other news, i’ve found a studio space for painting! it’s in gowanus, the next neighborhood over and the home to the gowanus canal, one of the most polluted bodies of water in the country. this stinky superfund site is something to behold – the small is indescribable.  that’s why i like to call it the go-anus. ha! i kill me.

brooklyn art space (formerly known as the brooklyn artists gym) offers membership in a shared open studio for considerably less than the cost of private studios ($200 a month compared to $400 and up). they gave me a tour yesterday and i couldn’t sign up fast enough. they have giant easels, drying racks, and lockers for storage – it’ll be nice to have my painting supplies out of our crowded house. BAS also offers free figure drawing and monthly group critiques. i’m too messy to paint inside so i’ve been using our patio, but recently, i’ve been rained out every day i’ve planned to paint, so having permanent indoor space with big windows and a positive creative environment will help to get me painting much more regularly. i’ve just started another painting class at the creative center – this one focuses on the italian painter giorgio morandi, whose work was unknown to me. his still lifes are delicate, calm and quiet – radically unlike my own frenetic, dense style – and i think the class will expand my repertoire in some interesting ways.

since i’ll soon have a setup to paint more often (and will have to pay for it), i want to reiterate my availability to create art for you, my friendly and dedicated readers. i’m working on a website to be able to share my work – in the meantime, here’s a link to a gallery of my first commissioned work. (i hope the link works this time – please let me know if you have problems visiting the site). at the moment i have a half-dozen commissions in progress! what an amazing journey this has been so far, and it’s one that i’m certain will continue to bring me great joy. please drop me an email and let me know if you’re interested in discussing either a custom work or purchasing something from my growing catalogue.

Posted in advertising, art, cancercare, events, links, painting | Comments Off

karaoke for the soul.

Tuesday, September 25th, 2012

thank you all for your kind comments and messages of hope. i’m feeling vastly better than i was a few weeks back, and much of that is due to your constant support and love. it means so much to feel comfortable sharing all that i did – there have been times when i’ve done so and five minutes later, my phone starts ringing from worried friends checking in. i was hesitant to tell you all how much i’d been struggling, and i appreciate you understanding that though i was really suffering, that i was already doing better by the time i put up that post.

i was hoping to get another long post together today, but ended up spending my time applying for a painting residency at the vermont studio center. i’m hoping to get a scholarship, since a month-long residency runs nearly $4000. ouch! the application is due in a few days so it shouldn’t be too long before i hear – it would so marvelous to be able to dedicate a full four weeks to time in the studio.

and now i’ve got to get ready for country karaoke! our favorite live karaoke band doesn’t have regular gigs any more and we’re missing the experience, so we’re off to a barbeque joint in the flatiron district to eat some pig and sing some country.

i love watching kathryn do karaoke and set the stage on fire! metaphorically of course. i’m the one who sets the stage on fire for real. how do you think i managed to win a trophy for my performance of jimi hendrix’s fire? sure, it probably helped that i was dressed up as a zebra jockey, and kathryn had turned my late grandfather’s seat cane into a zebra that i could ride. i think that had something to do with it.

Posted in events, gratitude, rock and/or roll, sadness | 1 Comment »

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.

Posted in amazing, events, gifts, gratitude, loss, love, music, sadness, travel | 4 Comments »

sharing talents

Tuesday, July 31st, 2012

this weekend, we hosted the 2nd annual east coast all-participatory talent show/BBQ/birthday celebration, or 2AECAPTSBBQBC. the acronym just rolls off the tongue, doesn’t it? my great (as opposed to good) friend annie bacon founded the talent show some years back, with the emphasis on all-participatory. the mandatory nature of the talent show leads folks who wouldn’t usually get up in front of others and put their abilities on display – people get up and show their bellies and say “i’m creating life” or they bring their remote control helicopters and perform tricks or they lead the audience in camp games. all kinds of goodness – man, we have some talented friends. kathryn’s talent this year was a play based on her visit with george w. i still can’t believe that after being told about my battle with cancer, he joked, “well, i hope it’s not cervical cancer, ’cause then we got bigger problems.” (he was in zambia with laura to work on cervical and breast cancer awareness).

i wanted to demonstrate my newly-discovered talent for painting, so i set up a station in the living room and asked the audience for suggestions on where & what i should pain – color choices, brush type, stroke direction, area of the canvas etc. i’ve posted a gallery of the process and final product here. i call it “groupaint.” i think it finished up pretty well!

Posted in art, events, images, painting | 1 Comment »

wow.

Sunday, July 22nd, 2012

two years ago, when i joined first descents on a kayaking trip in colorado, i had a great time – but i didn’t feel the life-changing force that some participants did, and i returned home not feeling especially challenged by the level of rapids we encountered on the river.

this time, it was different.

i’m still sorting through the 1,000-plus pictures from the week (a number that will drop significantly, but still). the people – both campers and counselors – were generous, hilarious, and real. after just a week, i count many of the participants among my dearest and most-loved friends. meeting people who’ve shared so much of the terrible, soul-sucking experience of living with cancer provided an opportunity to stop feeling alone in my struggle (not that the support you’ve all given me has left me feeling alone – far from it – but there’s a common bond between survivors that’s impossible to recreate). making new friends can create space to remind ourselves of who we truly are – when we present ourselves to newly made acquaintances, we decide for ourselves how we want the world to see us, and it’s a great reality check to see how you’ve changed and who you are this time.

the river (the flathead) was a dramatic step up from colorado, and i spent an awful lot of time out of the kayak, swimming in the ice-cold glacial melt and trying (aka failing) to avoid the many underwater rocks. rocks that were hard. rocks that left bruises so deep they have yet to appear on my hips. and on my back. and on my butt. and on my shoulders. and on my hands. but i learned far more from the rapids i failed to navigate successfully than the ones i managed. it’s not like i swam more than other kayakers – in fact, over the course of the week, every single participant exited their kayak more than once. the last full day on the river saw us through a number of class III rapids (class VI being fatal) and i did manage to make it through most of them unscathed. i left the river feeling like i’d learned a great deal about how to work with – and not against- the flow of the river. i’ve always appreciated the ways that a kayak allows you to interact so intimately with water, but this past week, with the excellent guidance from our guides, i came to understand the ways of the river in a new light.

it was a beautiful week. it was a gloriously beautiful week. the river ran along the western edge of glacier national park, and we couldn’t have asked for a more gorgeous stretch of river. the weather was perfect – warm and sunny on the river, cool and calm in the evenings. the soft grass in the yard of our lodge made for a great diving surface during our endless hours of volleyball. i think i’m as sore from bumping and spiking as i am from my studies of the variety of underwater rock formations. the soreness and exhaustion is elating. this time i’ve inflicted the pain on myself, rather than it being a result of treatment or surgical intervention. i’ve had to limit so many of my choices over the past four years, and to feel in control of my life once again is a privilege i once felt impossible to achieve.

thanks again to everyone who contributed to my travel costs, and to those who made donations to first descents as part of team groinstrong. we didn’t reach our goal of $1000, but every little bit helps. i’m so incredibly grateful for your supporting this marvelous experience. be prepared for another round of fundraising for FD when my next adventure comes around in 2013!

while i was in montana, i received an email from one of the communications staffers at cancercare. last fall kathryn and i recorded interviews about our experience with the organization – you all know by now how essential they’ve been to me. since i’m mid-process with my pictures from the trip, i thought you might enjoy the video from the interview.

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Posted in amazing, cancercare, events, gratitude, pain, philosophizing, travel, videos, weather | 3 Comments »

scan results today!

Wednesday, June 20th, 2012

a few years back i posted a tony hoagland poem, “medicine.” i love tony’s poetry and am grateful to brian newhouse for gifting me one of his books. the poet and his mother both have dealt with crippling illness, so he knows from whence he speaks when he says:

Daydreaming comes easy to the ill:
slowed down to the speed of waiting rooms,
you learn to hang suspended in the wallpaper,
to drift among the magazines and plants,
feeling a strange love
for the time that might be killing you.

i’ve grown so accustomed to doctor’s offices, billing agents, the mountains of paperwork, byzantine insurance policies and more that i’m seriously considering volunteering as a patient support agent, sharing my now-expert knowledge of the workings of the administrative maze that comes with being chronically ill. i find it criminally negligent and offensive that the patient is responsible for overseeing significant parts of communication between care providers and insurance companies. the ill have so much more to worry about. on an average week i spend two or so hours on the phone with medical business – managing my appointments, getting approval for necessary medications and crucial care, and of course fighting bills that shouldn’t exist. i’m sure at this point that my credit rating is torn to shreds – i’ve had a number of bills (though none for awhile) go to collections, nearly all through no fault of my own. i talk to a doctor’s billing office and they say everything is fine, ignore the bills, but two months later i’ll get the mail and discover aggressive and condescending demands for payment. then i call the care provider directly and they say oh, i can’t believe that happened. that shouldn’t happen.

damn right it shouldn’t.

but i digress. this afternoon kathryn and i are headed to my oncologist to hear about the findings of my abdominal and pelvic MRIs. i tend to have a good sense of my body and if the cancer is causing problems, but at the moment i’m feeling as healthy as i have in a long time. granted, i have a mild cold, but that’s actually progress – two years ago, a cold would have sent me to the ER. i’m glad i have a cold.

so i’m not especially concerned this time around, though of course my cancer can always surprise me. i’ve previously described fighting melanoma as similar to punching jello. you attack and say, oh look, it’s gone. but then you look closer only to find that, in fact, it’s still there; it just moved around a bit. it’s remarkable, though, that since my diagnosis, treatments for melanoma have made huge leaps in extending lives and even bringing patients back from the brink of death to live long and (mostly) healthy lives. most of those drugs didn’t exist in any usable form when i had my first surgery – ten years ago, i would have been out of options in 2010. i’ve heard stories of people dying within weeks after discovering their advanced melanoma. obviously, i consider myself very, very lucky. and also obviously, i’m incredibly grateful for all of your support through all of this. i can’t say it enough: thank you.

before i sign off, i wanted to share a recap of the cancercare gala last week. i’m still basking in the satisfaction of a job well done and the remarkable response my remarks garnered – i’m meeting next week to discuss potentially working with a documentary team that’s producing a film about the history of cancer. i’ll tell you more about that after the meeting.

my appointment is at 4:30, so check back in the evening for results.

here’s the recap! there’s also a facebook gallery of photos from the evening here.

Annual Spring Gala Raises More Than $520,000 in Support of CancerCare

CancerCare CEO Helen H. Miller welcomes the evening’s guests

More than 320 guests attended CancerCare’s Annual Spring Gala this past Thursday, June 14 at The Mandarin Oriental in New York City. The event raised more than $520,000 in support of our free services for people affected by cancer.

 

Paddles up!

The evening’s festivities included both a silent and live auction featuring exclusive, one-of-a-kind items including “Best of New York City” experiences, exotic luxury getaways, designer merchandise, and gourmet food and wine packages.

Actress and advocate S. Epatha Merkerson

Actress and CancerCare advocate S. Epatha Merkerson was honored with CancerCare’s “Help & Hope” Award, which was presented by Academy Award-winning actress Whoopi Goldberg. Merkerson, best known for her role on the long-running NBC series “Law & Order,” is a longtime advocate for lung cancer research and awareness. Her “Law & Order” character, Lt. Anita Van Buren, notably faced a cervical cancer diagnosis in the drama’s final season, bringing awareness to women coping with the diagnosis.

CancerCare client Jonah Eller-Isaacs

CancerCare client Jonah Eller-Isaacs was also honored during the evening, taking the stage to deliver a moving account of how CancerCare helped him cope with a diagnosis of stage IV melanoma at age 28. Jonah said:

Every time I’ve felt overwhelmed…CancerCare has been there. They’ve done so much more than help me cope – they’ve helped me develop lasting tools to manage the heavy burden of my diagnosis. My counselor, Sarah Kelly, has taught me not only how to deal with my illness, but how to be a better, stronger version of myself.

Learn more about Jonah, and read his speech in its entirety, on Jonah’s blog, GROINSTRONG.

The evening also featured a moving video of three CancerCare clients sharing their stories of how CancerCare helped them cope with their diagnoses:

View a photo gallery from the 2012 Annual Spring Gala on our Facebook page.

CancerCare sincerely thanks all of our supporters and sponsors who helped make this year’s Gala such a success!

Whoopi Goldberg with CancerCare clients Jonah Eller-Isaacs, Paulette Kennedy, and Donna Spano

Posted in amazing, cancercare, clinical trials, complaining, events, gifts, gratitude, images, links, literature, melanoma, philosophizing, poetry, skin cancer | Comments Off

calendar for hospital visits and meal assistance

Friday, May 18th, 2012

Well, here we go. I’m scheduled to arrive at 10 am tomorrow, with my surgery taking place at noon. I’ll have Kathryn post an update as soon as we’re through. Cell phone use is discouraged in the waiting room, so please be patient! Without any unexpected complications, I should be through the operation and moved to my room by the late afternoon.

In the meantime, I wanted to explain the process for scheduling hospital visits (and later, meal support and visits back at home). I’ve set up a custom schedule using carecalendar. All the login information is below – as this post gets pushed down the page, you can find all the information near the top of the right hand side of the page under “Visits and Meal Calendar” – if friends ask for visiting information, you can forward that link to them. It can be a little hectic trying to field calls and answer messages to set up visits, so I’m hoping this system helps smooth out the process for all of us! If you’re far away or unable to visit and would instead like to offer your financial support, you can do so by visiting my donation page.

Instructions for CareCalendar scheduling

First, visit my personalized calendar here:

http://www.carecalendar.org/logon/112717

For Calendar ID, enter 112717

For Security Code, enter 7864

Once you log in, you’ll see the calendar page. Empty slots are listed in red – expected in-hospital days are broken up into hour-long slots during visiting hours (10 AM to 8 PM). Click on the date that appeals to you – note: once you click through, you’ll see which hour you’ve selected; if that slot doesn’t work for you, simply use the back button of your browser to return to the calendar.

Please be sure to carefully read the details, as they include important information about the location of the hospital, room number, etc. After you select your preferred date and time, you’ll be asked to enter your name, phone number and email. Give as much information as makes you comfortable, though email is important. A confirmation of your selection will be sent both to you and to me.

Isn’t that so great? I hope the process works well for you. Thank you in advance for taking the time to stop by or to provide a meal! Your generosity and dedication have played such a crucial role in making this exhausting experience slightly more manageable. Kathryn and I both are filled with awe at the way that our community continues to support us in remarkable ways.

See you at the hospital!

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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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Posted in amazing, chemotherapy, events, gratitude, hospital visits, images, links, love, music, pain, physical therapy, rock and/or roll, videos | 3 Comments »

i second that emotion chart

Wednesday, May 2nd, 2012

i’m finally coming back to life a bit after an exhausting start to the week. i had a whole slew of appointments and meetings scheduled yesterday and monday that fell by the wayside. i was especially disappointed to miss the first session of my new drawing class, but given that the creative center caters to people with chronic illnesses, they understand when life gets in the way. still, i hate having to make sacrifices when fatigue or medical responsibilities demand my time. such is life.

and my energy is returning just in time, as we leave in a few short hours for scott and laura’s wedding in nashville! kathryn’s eldest brother – and her whole extended family, really – has provided both me and kathryn with much-needed support ever since we started dating – the anniversary of which coincides with the anniversary of my diagnosis. it’s been four years now! it’s a little intimidating to be staring down a busy weekend when i’m feeling so run down, but i’m sure all the love and wonderful company will help me rally.

i saw this chart posted recently on xkcd and had to share it. though the variables and timing are off, the sentiment is awfully accurate.

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austin! awesome!

Wednesday, April 18th, 2012

hello friends! i’ve been crazy busy this week and haven’t had a chance to post. so much has happened! all good stuff. my dad was in town a few days back, and we ate our way through the weekend. an old friend/band-mate and his (newly pregnant!) wife were also here for a visit. it was wonderful to catch up as we strolled together through a hot and rowdy saturday night in the east village. and i’ve been getting everything ready for my trip – i leave for austin in a few hours! kathryn’s brother scott is getting married the first weekend in may, and his friends are throwing him a bachelor party in austin! my only visit to austin was an overnight stop during an epic, too-fast cross-country road trip from albuquerque to austin to poughkeepsie (2,500 miles in under three days). between austin and new york we made only a single tourist stop – graceland. my god elvis had bad taste.

so now i get to experience austin for real. as an added bonus, the family of my sister’s husband andy lives in austin, so i get to see them too! it’s an all brother-in-law-focused weekend. BILF WEEKEND! ha.

i’m glad i can stay with andy’s family – the late nights and heavy drinking that are sure to commence are neither appealing nor possible. though my body continues to improve, i’m still keeping teetotally away from alcohol. it’s funny; five years ago, when i was bartending all the time and drinking well beyond reason, the suggestion that one day i would willingly dry out would seem about as likely as a new york mets/oakland a’s world series. but now, after all my body has been through, yet another poison holds no appeal. i’ll have a sip here and there, but after even a few sips i start to feel awful.

and of course i’m also glad to see andy’s family because they’re wonderful! with so many old family friends at jessie and andy’s wedding, it wasn’t a great time to get to know new friends, so now i’ll have the luxury of a gorgeous weekend of texas spring to spend some time going deeper with the anderson furgeson family.

in the meantime, i’m doing my best to care for my ailing back, though every day ends with me limping and crippled. next week i’ll get a cortisone shot and begin a combination of chiropractic adjustments, physical therapy and acupuncture. i wish i could avoid the hassle of air travel – i’m definitely bringing my cane and pulling the C card for all it’s worth.

new york: i’ll be back on monday. don’t have any fun without me!

Posted in events, pain, physical therapy, travel, weather | 3 Comments »

what a pill.

Monday, April 9th, 2012

FINALLY. my insurance company has approved my capsule endoscopy after i can’t even remember how many months of waiting. i think i first tried to get the procedure in november – that’s an awfully long time without access to the only diagnostic tool that allows us to get a sense of my disease progression. i go to the hospital early on thursday morning to swallow the pill, then spend the day wearing the data belt that wirelessly receives the information from the pill as it journeys through innerspace. my insurance documentation warns me that they haven’t decided whether or not they’ll pay for it, though they’ve said the same about a number of my covered procedures, so i’m not too concerned. still, the capsule endoscopy can cost upwards of $2,500. so let’s hope it’s paid for.

how was your easter/passover weekend? ours was lovely, thanks for asking. we joined our close friends matty and lila at their family’s seder dinner – kathryn’s first ever! you’ll get a sense of its conservative nature when i tell you that they served pulled pork. so… not the most observant family. which is just fine by me. i love a raucous, rowdy seder dinner. though not so much the passover weekend traffic out to long island.

and for easter we met up with some new friends who live just down the block for an easter-themed scavenger hunt through the neighborhood. it was epic. the hunt had four stages, ending with teammates entirely different from the initial egg-focused relay races. my team won! our victory was pinned mostly on the strength of our original music video/rap, “easter is for scavenging.” DJ TJ (aka tiny jonah, my muppet alter ego) featured heavily in the video. with puppets on your side, how can you lose?

and speaking of not losing, the mets are looking much better than anyone expected at 4-0 to start the year. sure, it’s early, but we mets fans have to take great joy in our small victories. they’re scrambling to fill seats, so wednesday’s 1 PM day game features tickets for $2.50. that’s like prices back in oakland! no dollar special on hot dogs though. i’m still looking for company to join me at the game – shoot me an email if you’d like to come along!

tomorrow, if my blood draw doesn’t show anything out of the ordinary, i’ll have my first infusion of ipi. the infusion itself only takes 90 minutes, but with so much to discuss, we’ll probably be there half the day. if i have some time after the appointment, i’ll give you more details about the treatment. we have lots of unanswered questions – this is one of those times when it’s a wonderful gift to have a team that takes the time to be present and stay with us until we run out of questions and our fears are (as much as they can be) assuaged. i’ll try to do the same for you.

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Posted in baseball, events, religion | 5 Comments »

gary’s memorial service

Tuesday, March 20th, 2012

sorry for the delay in posting there. i’m still waiting for the protein test results. as much as i appreciate the break from treatment – in particular the opportunity to grow back all of my hair – i don’t want to risk my disease advancing. hopefully i should hear any day now, and of course i’ll let you all know as soon as i get the results.

i’m headed back to my painting class tonight, and i’m not looking forward to seeing my work from last week. i was so pleased with how the minnesota sunrise turned out. i decided to take carolyn d’s advice and try a california painting, but it just didn’t pan out. i might be able to salvage it tonight with some new layers of paint, but i think i’ll just have to start over. sigh. painting is hard!

i thought some of you might be interested to know that gary’s public memorial service this afternoon will be live streamed. the service is at 4 pm central (5 pm eastern, 2 pm pacific) and is watchable on the university of minnesota events site here. many thanks to gary’s widow estelle for sharing the link. estelle, my heart goes out to you and your girls. gary was so special to all of us, but of course even more so to all of you. i’m sure the service will be beautiful, and i’m so glad that us out-of-towners have an opportunity to watch.

 

Posted in art, events, links, loss, love, pain, sadness, videos | 3 Comments »

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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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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