Archive for the ‘info and updates’ Category


Ezra at his last birthday party, in his wedding suit, taking portraits of all his guests (Dec. 18th, 2013) Photo by Caroline Samponaro.

Ez should be 44 today. He made it to 40, which was longer than anyone expected at the time, and yet way too short by any calculation. Ok, so he got to the top of the hill without having to go over, as they say we do after 40. But the thing is, Ez couldn’t wait to get older. He loved the thought of himself as an old, dignified man, with silvery grey hair and glasses. More immediately, he was desperate to see me pregnant and to have kids in time for them to know Putney’s snuggle. He was sure our kids would be girls, who would be tomboys. He’d be a stay at home dad and I’d be a professor at nearby City College. The kids would hang out with him in the shop, with Adi and Boop at their place around the corner, with Uncles Thomas and Evans next door, and with the kids in the neighborhood as soon as they were old enough. Ez would build bike seats and bikes for every phase of their development. They’d all bike up to have lunch with me at school and he’d make dinner for us every night. Ez would be first in line to sign the kids up for NYC public schools, completely unphased by the trials and tribulations that would almost certainly entail. We’d spend the summers in Nova Scotia. He’d teach the kids to swim and sail, and how to survive the various elements. We’d do house and island together and he’d help me take care of our community of elders for whom primitive island life would be getting pretty difficult by then. If he went too long without making stuff, though, he’d get anxious, and I’d insist on staying on the island until September of each year, so at some point he’d take up boat building as a summer job. Back in the city, during fall, winter, and spring, he’d keep building bikes in one way or another for as long as he found that interesting and beautiful. He’d keep taking photographs, making movies, and cooking food. I’d read and write and maybe get to a dance class every once in awhile. Beyond that, my vision of him, us, and of his vision of us gets blurry. I guess that’s as far as we got in terms of dreams and schemes.

In his afterlife I’ve managed to keep a few of our dreams alive. Shortly after Ez died I started teaching at City College, which is hands down the best job I’ve ever had. I haven’t finished my PhD (in part because it is difficult to do while working full time), which means I get get harassed by CUNY every semester for not making “satisfactory progress”- this despite the fact that I have made progress (all but the dissertation), and that I continue to pay tuition and to teach their undergraduates for practically nothing. So that’s a drag, but also a pretty privileged problem.  And I should be able to finish my degree in the next year, at which point I can try for a permanent, salaried position. I spend the summers in Nova Scotia, taking care of the house, hanging out with the elders, learning how to survive the various elements if not how to sail (yet), soaking up the sun, and feeling at home. I’m grateful for the life and love that I’ve had and that I could have ahead of me.

And yet, I can’t seem to move through the grief or to “move on” with any grace. I just get by.  I go to work, I take care of the house in Harlem, and I communicate, more or less, with the handful of people I see on a daily basis. I’ve tried, in fits and starts, to find my way back to the people, places, and practices I love, to find new ones with whom and through which to move forward.  But one way or another, I’ve lost or withdrawn from almost every relationship and activity that ever mattered to me- most recently Putney Sue, but also friends, family members, housemates, and lovers- through death, distance, intentional and unintentional estrangement.  In the process, I’ve all but let myself die, and I hate myself for it. Ez would be so unimpressed, so frustrated with me.

Having spent today, his birthday, reflecting on all of this, I realize how much I relied on his energy, vision, and love to carry me through and to be my compass. And I can see clearly now that I’ve spent quite enough time marinating in loss. There’s simply too much to do. As Ez would say, it’s time for me to “get on with it.” I’m so glad I can still hear him.


Today would have been Ezra’s 43rd birthday.  The weather in NYC is the kind he liked the least- wet and unseasonably warm, yesterday’s snow melting into gray city slush.  I imagine he would have spent the day in his shop, determined to make something beautiful out of it.  In imagining this, I feel his distance.  Not his absence, as I have felt so intensely over the last two and half years, but the space-time between then and now, him and me, us and this.  I suppose that’s what happens after some number of moons and trips around the sun, especially in relation to a traveller like Ez.  But I have struggled to make sense of this particular flavor of pain, much less move through it with any grace.

The other day I saw my friend Marilyn for just a few minutes and she sensed the struggle.  She told me that movement and change- whether painful or pleasure-full- are not just facts of life; they are its essence.  Trying to fix the flux, avoid the pain, or hoard the pleasure is both futile and crazy-making.  Marilyn sent me the book that had recently reminded her of this: The Wisdom of Insecurity by Alan Watts.  I found the following passage especially helpful:

“When … you realize that you live in, that indeed you are this moment now, and no other, that apart from this there is no past and no future, you must relax and taste to the full, whether it be pleasure or pain. At once it becomes obvious why this universe exists, why conscious beings have been produced, why sensitive organs, why space, time, and change. The whole problem of justifying nature, of trying to make life mean something in terms of its future, disappears utterly. Obviously, it all exists for this moment. It is a dance, and when you are dancing you are not intent on getting somewhere… The meaning and purpose of dancing is the dance.  Like music, also, it is fulfilled in each moment of its course.”

This is something I think Ezra understood without the slightest effort.  It’s how he lived and died.  I’m grateful to have been reminded of this truth and of Ez in its light.

Meanwhile, the dance goes on…

ozzie-ezzieOswald Ash (left) and Ezra Alder (right), born on November 2nd, 2016 to dear friends, Caroline and Sarah.
violet-and-broLogan Ezra Nanney (with big sister Violet Ryan), born on December 12, 2016 to my brother Tripp and his partner, Leslie.



Today I found Ez’s 40th birthday card, the last card I gave him.  In it I admitted that I was having a hard time celebrating his birthday, that for me it felt more bitter than sweet.  But that I had no trouble celebrating him or us, and wanted to do that…

Today Ez should be 42 and still I feel more bitter than sweet.  I don’t want to memorialize him, I want him back.  It has been a little more than a year and a half since he died, but my sadness, rage, and disorientation only grow.  I become only more aware of how much I loved him, how much I’ve lost, how lost I feel.  But when I found this card today, it brought me back, if just for a moment, and made me want to celebrate him.  Here’s what I wrote, which still feels right:

Baby, these are some of the ways that I love you:

I love that you love me, unabashedly.

I love you for making me feel more safe and at home than I ever felt before I knew you.

I love how we’ve made a home together that makes others feel safe and loved.

I love your raw and determined spirit, how you jump and insist that the bridge will appear, or just build it yourself if you have to.

I love how you find beauty and pleasure in so many things.  I’ll never see a plate, a glass, a chair, a photo, or just about anything in the same way.  I’ll always think of how you’d see it, and make it more beautiful.

I love how you insist on sharing beauty and pleasure with others, and widely.

I love your constant pursuit of purpose, stimulation, and connection to the world.  It’s not how I do it, but has inspired me to find my own way.

I love you for helping me find my way, even when it takes me in other directions than you.

Trying to come to terms with losing you, living without you, is simply an impossible, unbearable task – I am too full of you.  I suppose I’ll have to find my way in this too, though, and that I’m in pretty good shape for it, shaped by your love.

I love you baby.  Thank you for all of this and so much more.  Happy Birthday.



Photo by Megan Ann Rucker, taken on December 18, 2011 at Ezra’s 38th birthday party.



A year ago today, on his 40th birthday, Ezra posted this “lonely photo.”  It came at the end of a blog post that recalled a long list of things he’d been able to do that year, despite his grim prognosis, and probably due in part to his choice to refuse chemo and to embrace palliative care.  He also described feeling untethered, given that his birthday and the end of 2013 had seemed like it would be his last horizon.  Ez lived five more months, during which he made many more objects and dinners, and took many more photos.

In late May, a few days before he died, we were sitting on the edge of the bed, looking out the window, and he said with joy, “It’s snowing!”… It wasn’t, of course.  Between the cancer’s progression and all the meds he was pretty disoriented.  I started to tell him gently that he was confused and to suggest he get some rest.  I’m so glad that I didn’t.  Instead I sat and watched with him, and said “Yea, isn’t it beautiful…”  Perhaps his last horizon was wintry after all.

Here’s to Ez and 40 fast years.

Big love,

Photo Equipment

ezra with camera

Dear “gang,” as Ez used to say,

Thank you for your interest and patience as we’ve felt our way through the process of finding new homes for Ezra’s tools and machines – a process that took a course of its own after starting off here.

After years of watching Ez carefully and passionately set up and use his shop, it has been extremely sad, to say the least, to see it taken apart.  But, with lots of help (especially from Sam and Rosko), parts of it are now being or are soon be used in the brilliant shops of Seth Rosko, Dale Lord (of Recycle-A-Bicycle and Crooked Hill Cycles, coming soon), Eric Monasterio (builder of beautiful custom racks and more), Jamie Swan, Benjamin, Harlem Built, Samuel D. Newman, Caldwell Sport, and others.  Contents from the bike room, for those of you who knew of it, have also been spread far and wide, mostly via Recycle-A-Bicycle, and with help from Eric, Dale, Caroline Samponaro, and Todd Miller.

For anyone still interested in wood, metal, and bike stuff, please stay tuned.  A good deal is gone or spoken for, but plenty remains, which we’ll try to post here soon.  If you’ve written to Sam or me about particular items and haven’t heard back, please forgive and try again if you like. I’m sorry we aren’t better organized, but it’s a lot to keep track of.

For anyone interested in photo equipment, please see below for a list of items and prices (big thanks to Sam and Matthew for your help with this). If you have any questions or are ready to purchase, please email me at Arrangements for payment can be made in person or via Paypal. .

Thank you again to everyone who has helped (including Megan Ann, web-maven) and followed along.

Happy Thanksgiving,

Pentax K1000 SE$130An updated version of the camera Ez learned to shoot film on high school
Hasselblad 500C/M$340 A classic, used for camera Ezra's return to the square format
Hasselblad XPAN$1,200 One of Ez's late favorites, inspired by Jeff Bridges
Nikon F100$225Ezra's favorite AF film SLR
Nikon D800$1,600Ezra's favorite digital camera, used to take many photos and videos
Canon EOS 20D$120 
Contax TVSII$200 
Polaroid Joycam$10 
Hasselblad Distagon 60mm f3.5$400 
Hasselbald Planar 80mm f2.8$399 
Hasselblad 45mm f4 (XPAN)$450 
Nikkor AF 35-70mm f2.8$200Used for many Nova Scotia wedding photos
Nikkor AF 28mm f2.8D$150One of Ezra's original Nikon AF lenses and a favorite focal length
Nikkor AF 35mm f2D>$250 
Nikkor AF 24mm f2.8D>$275 
Nikkor AF 60mm F2.8D Micro$250 
Nikkor AF 85mm F1.8D$280 
Nikon AF-S 50mm F1.4G$367 
Vivitar 28-210mm F3.5-5.6$35 
Pentax K 50mm F2$30Ezra used a Pentax 50mm when learning to shoot B&W film in high school
Canon AF 17-85mm F4-5.6$180 
Hasselblad 120 Film Back$125 
Printer - Epson Stylus Pro 3880$500What Ezra used to produce prints
Scanner - Epson Perfection V700 $300  
Monitor- NEC Multi Sync PA271 $600  

Ezra in his shop

If Ezra wasn’t in his shop working, he was thinking about and wanting to be in his shop working- and whether making bikes, furniture, pill flasks, photographs, or dinner, he was just as much if not more interested in the tools and processes as he was in the final products.  These tools need new homes.

Over the next few weeks and months, we’ll be posting for sale various items from Ezra’s wood, metal, and photo shops.  We hope others will find them as useful and relevant to their work as they were to Ezra.

If you have any questions, please direct them to Hillary: and Sam:

Items now for sale include:




Teaching Cancer to Cry

Ezra Caldwell

Daniel Ezra Caldwell died at home on May 24, 2014, after six years with cancer. He was cared for by his wife Hillary and other family and friends, with the support of the hospice team from the Visiting Nurse Service of New York.

Born in 1973, Ezra grew up in Putney, Vermont.  As a boy, he moved from one passion to another – juggling, acting, rock climbing, building crossbows and puppets, making constant use of his fathers’ woodworking shop. From the age of eight, he spent much of each summer in northern Vermont with the Bread and Puppet Theater, performing as the baby gorilla in their annual circus. After graduating from the Buxton School in Williamstown, MA, he lived the village of Santa Marta in El Salvador for a year during the post-conflict reconstruction, working in a woodworking shop with ex-combatants.

He attended the University of the Arts in Philadelphia, first focusing on art and design but then making an unlikely switch as a complete novice to the modern dance department. After graduating, he danced for Momix and Gabriel Masson Dance, then spent a year in a masters’ program in dance at Bretton Hall, part of the University of Leeds in the United Kingdom. Here he began to use video and persuaded an entire institution that there were two of him, the twins Daniel and Ezra, as documented in abundant footage. One of them attended the masters’ program; the other was a chef in a local Thai restaurant. His cooking benefited from the year as much as his art. He left without completing the degree, stubbornly determined that a written thesis should be unnecessary for an arts degree.

On returning to New York, Ezra choreographed and performed with his own small company, at times collaborating with his musician brother, Thomas Bartlett. He had work commissioned by universities in Belgium and Holland, performed in festivals in Europe and the US, worked as artist-in-residence at Sarah Lawrence, and at dance workshops in Lima Peru.  For almost ten years, he taught at DanceSpace NY, later Dance New Amsterdam, gathering a following for his athletic and demanding classes.

In 2007 he moved away from dance and teaching, turning back to the involvement with fabrication and design that had preoccupied him since childhood, and which had been refined during summers and other stretches doing construction and cabinet making.  He had for a while been assembling bikes from components, putting them together for friends and family and dance students. But now he learned how to weld and quickly became a respected custom builder and designer, turning out his elegant Fast Boy Cycles in a shop in his brother’s basement next door.

In 2009, Ezra was married to Hillary Nanney in a fisherman’s church in the La Have Islands, Nova Scotia.  Ezra had been visiting the islands every summer since he was a boy, and he and Hillary spent many weeks over recent years kayaking, mussel gathering and exploring with their beloved dog Putney Sue.

Ezra was always, in one way or another, a performer and an artist, but he was happiest when his creative impulses locked on to the practical side of life. Beautiful bikes met his needs better than fine art. He liked performing more as a cook than as a dancer.  He created and enacted a rich, unique life and death and he never lacked an audience.

Ezra decided a few years ago to forego further treatment for his cancer, and spent most of his remaining months deeply engaged in the things that mattered most to him – making bikes and other objects, mountain biking, photographing the world around him, cooking, playing pool. As his capacities diminished, he seemed always able to adapt and find new ways to satisfy his passion for productivity and mastery.  Courageous, independent, opinionated and stubborn to the end, Ezra amazed, delighted and exhausted his family and close friends.  At the same time he entertained and inspired thousands of people through his blog, which demystified cancer, chemo and colostomy bags with flair and humor.

Ezra is survived by his wife Hillary, his brothers Zachary Caldwell, Sam Caldwell and Thomas Bartlett, sister Mary Bartlett, parents Sheridan and Edward Bartlett, nephew Gunnar Caldwell and grandfather Alexis Nason, as well as numerous cousins and other relatives.

In lieu of flowers, if you wish to make a donation in Ezra’s name, the family asks that you consider one of the following:

Recycle-A-Bicycle’s Earn-A-Bike program is a school-based program that teaches students basic bicycle mechanics through RAB curriculum. Students then volunteer time after school and earn hours in exchange for a bicycle frame. Participants build bikes for themselves, friends, and family members, too.

To donate please visit: and click on “Ezra Caldwell Memorial Fund.”

Visiting Nurse Service of New York (VNSNY) is a not-for-profit home health care agency that provides direct home care by physicians, nurses, rehabilitation therapists, psychologists, and more.  For the last year of his life, Ezra became a passionate advocate for palliative care, due largely to his experience in VNSNY’s Hospice Program, as well as the Palliative Care wing at Mt. Sinai Hospital.

To donate online, please visit:; by phone, call: 212-609-1525; or by post, send checks to: 107 E. 70th St. NY NY 10021 (Make checks payable to: Visiting Nurse Service of New York; memo: In Memory of Ezra Caldwell).

Big Bad Bobby Earle.



Ok.  It’s been more than a minute since I’ve managed a post.  As usual, lots to say, and too many words to say it all..  or something.   I’m working on a post with the necessary medical updates, but it is coming rather slowly, and in the mean time, there is something more time sensitive that I need to share.  Many of you have written comments or emails reassuring me that I don’t NEED to write.  That I should only write if and when it is of benefit to me in some way.  Still others have written to say, “please please..  it doesn’t have to be a lot..  just anything you think of.  Put it up there!”

While I appreciate the sentiment of both, neither really hits its head on the nail of the issue at hand (so to speak).  At some point along the line, enough people started to follow this blog that I began to feel a certain debt of gratitude, and with it a duty to fulfill what for me had become an unspoken mission statement:   To faithfully report the progress of this brutal disease and to do so with as much honesty as I could muster.  To put it all out in the open without getting caught up in how embarrassing, graphic, or scary elements of it might be.

SO!  I’ve got an overdue post in the works that I’ve been having a pretty difficult time getting onto the page.  Occasionally, though, this blog serves a different master.  Occasionally, (for shame, Ezra!) I take advantage of the fact that the blog gets a rather surprising number of views to put something out there that I think deserves the attention.  In this case, that something is the ongoing story of my good friend Bobby Earle O’Brien and his 2014 Boston Marathon bid.

To Recap.  Bobby Earle (who some of you will remember from a rather extraordinary act of generosity a little over a year ago wherein he donated a NEW Industry 9 29er wheelset for the UTA, just in case the corporate sponsors didn’t come through in time) decided, despite swearing that the 2009 marathon would be his last, that he would run 2014 anyway.  WHY!?  I’ll let him explain.

Here’s where the comedy of errors begins, however.  During a workout in early February, Bobby sustained some sort of mysterious injury in his left Quad region, had to stop the workout prematurely and wound up in a walk in clinic where he was handed some crutches but not given any kind of conclusive diagnosis.  When he did finally get to see his orthopaedic surgeon (the man has had quite a number of surgeries) and the appropriate tests were done, the conclusion was a stress reaction..  Something that would have become a full blown stress fracture if he had continued to work out on that unlucky day.  The recovery was going to entail 4 weeks of rest.  The good news was that he had already done 2 of these weeks just waiting around for the diagnosis, the bad news, of course, was that this ultimately would mean one month of training taken out of what was less than a 3 month preparation to begin with!  The two weeks passed and he eased back into training only to break a toe a couple of weeks later.

Miraculously, though, on March 29th, Bobby was able to do the final long training run (22 miles) with the rest of the Dana Farber Challenge crew (this is mystifying to me).  And since then he has been enjoying taper time (A term that will mean something to runners out there perhaps).  Again best to let Bobby describe that AND the long training run himself.

Due to some of the medical issues that I’ve been having trouble getting on the page, I have been unable to cheer lead quite as I had intended as Bobby’s preparations went along, and now we’re finding ourselves just a week away from the marathon with a fair amount of fundraising left to do.  Bobby sailed past the Dana Farber Challenge fundraising goal, but his own goal was quite a bit more ambitious.  And since Bobby is running this thing in my honor, I feel some responsibility to help plug for the cause.  Please check out his blog for the marathon, and even more important at this late stage, check out his fundraising page!!

Thank you all for any help you’re able to give, and watch here for an update coming soon, explaining where things stand for me these days.

As always, thank you for following along, and big love to you all.


A day of rest




I am determined not to let so much time pass between posts.  Simply because it is much easier for me to stay on top of it if I don’t.  Yesterday I had one of those strange days, they’ve happened before, where I just never really wake up.  I woke up this morning to have coffee, and I had essentially slept for 28 or 29 hours straight.  Or, I guess I should qualify that just a little..  I had slept for 28 or more of the last 33 hours.  I woke up yesterday and had coffee as usual, immediately irrigated, went downstairs to make a couple of pieces of toast, spoke with hill for a moment, and then went back up to the bedroom to answer a few emails (that all took a couple of hours, and to be honest, I slept through some of that irrigation time).  I’m not sure what time it was when I woke up to realize that I was slumped over to one side sitting on the bed and that the computer had long since turned off and fallen off my lap to the other side.  One of those completely uncomfortable positions that you only find yourself in when you are BEYOND tired.   SO.  I put the computer away and lay down.

Woke for a text from my mother.  “I’m at fairway, would you like a baked good of some kind?”

“Why yes!”

Woke some time later for the delivery of said baked good, but fell back to sleep without eating it.

Woke to see Hillary, a vision, “I’m leaving now,  Study group.  Remember to take your 4:00 medication.”

“Whoa, really?  Already?  Don’t go!”

“Baby..   ”

Woke to see Hillary.  Back again!  “What would you like to do about dinner?  Your mom said that they had leftover potato leak soup..”

“Sounds great!”

Woke to Hill sitting by the bed “Dinner’s ready, shall I bring it up to you, or would you like to come down?”

“I can come down.”

I made my way down stairs for just the second time of the day, and found that it was just me and Hill for dinner.  A beautifully set table.  Salad, warm baguette, bowls of soup.  Simple and delightful.  Cleaned up the kitchen and ate some ice cream straight from the container.  Went back upstairs, fed the dog, brushed my teeth, climbed BACK in bed.  Watched an episode of The Good Wife with Hill and went back to sleep.  Slept through the night without incident (except the 4:00 alarm that Hill sets for my medication)..

I can’t explain it.  I don’t know what makes it happen.  But every once in a while, my body demands it.  It simply must have a day of sleeping and it takes it.  No change in the drug regimen.  No previous day full of exhausting behavior.  Just a day of rest.



Every once in a while lately, I walk past a mirror and realize that I don’t recognize myself.  I’ve developed steroid face!  It’s really unfair.  I feel like hell.  I feel like I’m wasting away.  I should look gaunt! Not hale and hearty!  So.  Here you are.  A little photo montage of fat face Ezra to make up for no pictures of me at all for such a stretch.




































I’ve been in this position before.  A lot happens in life and I don’t find the time or energy to keep up with it here on the blog, and before I know it, I have a simply daunting amount to share and the task of writing a post feels nearly impossible.  So I don’t write, and in the relentless way that it does, time keeps passing, and oddly, things keep happening and naturally that task of writing a little blog post gets even harder.  Recently I have begun to get a lot of emails asking how I’m doing.. pointing out that it’s been a long time since I’ve made a post.. asking for a quick update.  From my perspective, though, a QUICK update feels simply impossible.  The only thing to do for it is to bite down hard and climb out in whatever haphazard way I can.

On the 11th in Sochi, my cousin Sophie Caldwell tangled skis and fell in the final of the women’s individual sprint event and ended up finishing 6th, and last..  6th and last OF the final 6..  That is to say 6th (and far from last) overall in the event.  Or, to put an even finer point on it, THE BEST FINISH EVER IN THE OLYMPICS BY ANY U.S. WOMAN!!!!  YES, I’m proud.  Way to go, Sophie!!  I hope you’re feeling pretty pleased with yourself.  You certainly deserve to!  (My brother Zach is over there as well wax testing and coaching and generally working his ass off from dawn ’til dusk so that the athletes can have as good a time as possible.  And last but far from least, our friend Noah Hoffman is over there racing and blogging about every detail!  GO NOAH!  We’re all very excited to see you race the 50k!)

A little later, on the same day back here in these United States, my good pal Bobby Earle O’Brien got some very good news from his orthopedic surgeon.  And I’ll quote, “It’s probably a whole lot of nothing.”  I met Bobby about a year ago when I was building the UTA.  I was courting all of the corporate sponsors for the bike and everything was coming together nicely, but somewhere I must have mentioned that there might be a hold up in the availability of rims, or SOME such thing.  Bobby’s response was to donate a brand new, never used Industry Nine 29er wheelset.  Some of you who read this blog are bike nerds, and know exactly what that means, for the rest of you, I’ll just say that this set of wheels retails for a good deal more than most people would feel it was sensible to spend on a complete bicycle and that he was donating these wheels with the full understanding, in fact with the intention, that they would be back up wheels, in case the rims or whatever it was didn’t come through in time (In time for what, I’m not sure..  In time for the bike to be assembled and ridden at its earliest possible convenience I guess?)

I only mention the circumstances of our first getting to know each other because it says something of his astonishing generosity, which is currently at play again, and according to his orthopedic surgeon will NOT be derailed by a mysterious injury he sustained during a training session last week.

Here’s the deal.  Despite declaring, after running Boston’s 2009 marathon, that it would be his last, Bobby has decided to do one more.  Why?  Well.  Apparently because of me.  He is running it as a member of the Dana-Farber Marathon Challenge team (all money goes to fund basic cancer research), which commits him to raising at least $4k, but his own rather ambitious goal is to break the $10k mark.  If there is one thing that keeps coming back and surprising me over the course of my relationship with this disease, it is the overwhelming generosity of perfect strangers.

Please please help him reach his goal if you are able.  Make him a friend on face place and follow along on his blog as he gets ready to run ONE MORE marathon.

So there’s the last couple of days.  I made a stab at a blog post last week too, and only managed the following.

Today we had heavy wet snow in NYC.  I was working in the shop and heard the scrape scraping of snow shoveling and went up to the sidewalk to find Hill working away.  She was clearing the snow almost as fast as it was piling up.  It was beautiful out, in the way that snow in the city can be for the first hour or so.  And Hill was beautiful wearing a totally strange and silly white monster hat that Andrew brought back from Japan a few weeks ago where he’d been doing publicity for the walking dead.  I think he must have received the hat in a gift basket or something. It has that unmistakeable quality of cute that the Japanese have practically trademarked.  Somehow the hat is perfect on Hill, and is especially perfect on Hill as she shovels away trying to keep up with the snow coming down.

I went inside to grab my Xpan.  A perfect opportunity to finish up a roll of color film that was clogging up the works!  The Xpan is a manual focus rangefinder, which will mean something to some of you and not to others.  The significance here is that it is a manual focus camera of a sort that is somewhat difficult to focus until you get used to it.  Used to it or not, though, as I tried to get Hill’s silly monster hat in focus while she moved around the sidewalk shoveling, I realized that I had lost so much grip strength and dexterity in that left hand that I simply couldn’t do it!  Between not being able to FEEL the focus ring, and not having the strength to make it move once I’d found it, I was simply out of luck.   GAH!!!  I have a friend named Colton who I know only through the internet, who is a photographer (among other things)  with ALS (Lou Gehrig’s). He has lost a LOT of physical control at this point.  Right hand and left.  His whole body in fact, is in on the act.  He has a magnificent collection of cameras most of which he can’t entirely use without help.  He remains passionate about shooting though.  AND, he finds a way.  Most often, it seems, with our mutual friend, John Thomas who drives him to good places to shoot, helps him get film in the cameras, sets up tripods, you name it.  I am amazed by Colton’s resolve. As much as John’s generosity may make it possible at times, it is Colton’s WILLINGNESS to accept that help and much further REQUEST it that feel so foreign and impressive to me.  It was thinking of Colton in that moment of blinding frustration and rage, that kept me from simply hurling my Xpan at the ground.  Thank you Colton (and thank you JET).  In fairness, it was a little chilly out and I had no glove on.   For that left hand to be cold DOES exasperate the issue a little.  But the deterioration is real.

It’s just a week and a bit later now, but it turns out that the frustration I felt at not being able to focus that camera was just the tip of the iceberg.  The deterioration in my hand since that day has been so startlingly fast that it has left my head spinning.  From one day to the next I lose CHUNKS of basic function.  So fast that it takes me by surprise.  The other day I broke into tears in the kitchen because I had to hand the pepper grinder to Hill, suddenly unable to use it. Simply not enough grip strength to hold the body of the grinder still while my right hand did the work.  “When the FUCK did this happen!!??  I could grind pepper yesterday!!

I could also pee like a big boy about a week ago, and now I’m resigned to peeing into a bag tied to my leg.  Just like that.  It’s just easier to go out into the world (or even just downstairs to make a cup of coffee) with an external catheter and a bag than it is to risk the anxiety of maybe having to find a couple of parked cars to dive between in order to suddenly pee (try finding parked cars in your kitchen while you’re making coffee!).  The notion that I’m just 40 years old and have had to simply accept that I am completely incontinent (and impotent),  is a reality that I’d never have imagined even just a couple of years ago.   You can throw a temper tantrum.  You can dig your heels in and refuse.  But what does it get you?  Wet pants.

Andrew had been stopping in for a long weekend to help assemble a 29er mountain bike that I helped him dream up.  Months before he had been visiting and had seen the UTA in the bike room and fallen in love.  He asked in an email a week or so later if I could send him a list of the parts that went on the UTA, and then perhaps if I could suggest a commercially available frame that would come closest to fitting the role.  Naturally I felt myself getting sucked in..  I mean, what sort of self respecting bike nerd doesn’t get sucked in to a project like that!  So I told him that I could do him one better.. Rather than simply giving him a list of parts and a recommendation on a frame, I’d assemble him a bike.  I’d go back to my pre-framebuilding days, and simply be a bike stylist!  Pick out all the parts and the frame to hang them from, and then spend a few fun hours in the bike room inserting tab A into slot B and hoping it all worked out.  Andrew was ecstatic.  He loved the idea.  But wanted to be sure that he was there for assembly, because he wanted to know all about tab A and slot B.  I thought this was very sensible and we were off and running.  Lots of emails back and forth about parts and frames and their provenance.

Ultimately the weekend that he was able to stop in and play bikes, turned out to be the SAME weekend that Alan McDermott (auction winner of the UTA) chose to come and pick it up!  Todd Miller, the PT from VT, volunteered to come down just to lend a hand (since already at that point my left hand was starting to show signs), and my beautiful wife, seeing which way the wind was blowing volunteered to spend the weekend at a professor’s empty apartment in order to get some work done on a paper and avoid playing host to a small international mountain bike festival!  That weekend turned out to be a lot of fun, but probably deserves its own blog post at some point soon.  It was a bittersweet moment to watch the UTA get packed up and leave.  To say goodbye to a bike that I had put so much design thought into, and that so many players in the industry had been so generous in making happen.  But, getting to hang out with Alan for a good chunk of the weekend and share a few meals made that changing of hands considerably easier.  The UTA has a good new Papa.