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.




46 Replies to “February”

  1. Glad the UTA made it to the right new owner!
    And we can’t wait for a Hill selfie w/hat– if she would indulge us. HAPPY VALENTINE’S DAY to both of you!!! We’re all radiating love so it will surround you two, enjoy each other and cheers to your talented family in Sochi!!!! A big tail wag to Putney, love to all, XOXOxo

  2. Ezra, wonderful to hear from you. You are a very productive person, even while dealing with your illness day in and day out. You’re an excellent writer and are able to articulate and make real your frustrations and challenges as well as your joys and triumphs. I’ve been following the blog for quite some time now; I bought one of your photos a few months ago and often look at it for inspiration of how to face life head on and really live in the moment. Thank you for your honesty and for sharing with us some pretty painful moments. Thank you for sharing your love which you have in abundance. Happy Valentine’s Day to you and your wife.

  3. I love that no matter what sad news is in one of your posts there is enough good that I finish reading with a smile. At the moment I cannot think of a more generous person than you Ezra. Thank you for sharing. Thank you for painting such beautiful imagery in my mind. BIG LOVE from Chicago XO

  4. Thank you for your post — was worried about you !

    I hope you and Hill are having a wonderful Valentines Day — i want you to know your posts have inspired me to change from bring an RN diabetes educator to an RN Hospice nurse — I start April 4 .

    My son, Joe, ( the aspiring frame builder —cobraframes.tumblr.com ) turned me on to your blog somehow last summer.

    I so much appreciate your posts — (((hugs))) to both you and Hilary

  5. I have been thinking about you and thinking babout you and then ‘viola’, it is Valentine’s Day and a post! BIG LOVE to you from the Mountains of Northern Nevada/Tahoe/Reno! Happy Valentine’s Day to you and Hill. You are beautiful!

  6. So nice to hear from you again, Ezra. For some reason seeing you here again brought to mind a scene from O Brother, Where Art Thou with Delmar (representing all of us out here in blog readersville, I suppose) in the movie theater saying to Pete, “We thought you was a toad!”

    It’s a relief to hear you are still, apparently, in good spirits. And I’m so sorry to hear about the slow deterioration of function … It’s good to hear that you’re able to cry about these things, though. You need to do that, just like the loves in your life need to do that with you … Thanks for being so open about all this, Ezra. I learn something about being a good person every time I read one of your posts.

  7. So happy to read this update. The other day I awoke pre-dawn, as I often do. Grabbed my phone and thought of you and your pup and your Hillary. I was worried that I hadn’t read an update in sometime, and I fervently searched the internet for any update that might be out there in the interwebs. I thought to myself that no news was good news, and just remained hopeful. I’m happy to read your thoughts and your description of your days…and meanwhile I’m all like “um, I made chicken today.” Ezra, you win at life. <3

  8. I must comment…Your point about how amazed you are at all the generosity that this disease has brought out in people towards you, well….its not the disease Ezra. In fact that hasn’t anything to do with it at all for it is strictly all about you and the person that you are.

    I have taken care of several people very ill with different stages and types of cancer and NEVER have I ever encountered the generosity you speak of with or for any of them. But then, they were all just average people living their lives but none of them have ever touched other people as you have.

    I can’t quite put my finger on what it is exactly that you have but it is something that few have. People see this and feel this about you so your illness and what you are going though is even more upsetting to people because you are just that rare beam of light that so few see often.

    You are a very gifted artist. Not only in one area but several. That also makes it harder for people to understand. Why you?

    So no, I don’t believe it is the disease bringing out the generosity but you are just loved by so many that have not even met you or spoken once to you personally so all that you are seeing is simply a reaction to you as a person and the love people have for you.

    Aside from that, I will admit i too was hoping for a post soon as it had been so long but I also hate to think of you having to continue blogging if it has become a ashore for you.
    I believe people would be disappointed but would certainly understand if you chose to stop writing on these pages.
    I just hope that if you do continue to blog, then you are getting something out of it and aren’t doing it because it is expected of you.
    Please continue only if you wish to……..

  9. Happy Valentine’s Day Ez! So good to hear from you.

    “it is Colton’s WILLINGNESS to accept that help and much further REQUEST it that feel so foreign and impressive to me.” >>>That impresses me too. I’m reluctant to ask for help. Yet now when people offer it, I accept with less shame than I used to. Like..ya know…when I epically tripped the SECOND I got into school for work Thursday…ahhh. You just have to laugh I guess. Something you seem to be better at than anyone. The universe is a twisted game.

    “You can throw a temper tantrum. You can dig your heels in and refuse. But what does it get you? Wet pants.” >> I needed to hear this.

    How you are so wise I will never know. Talents upon talents. The goddamn pepper shaker does not matter in the big scheme of things.

  10. sending love back at you Ezra and Hillary. Happy Val’s day, and very glad to hear from you , no matter what’s going on! Thank you for all of it. Love. xo

  11. So good to read you again and wishing you the best.
    Picture of Hill in the white hat is greatly wanted.
    Feeling your pain as you learn you cannot rely on your left hand, for me it is my right.
    Your sense of humor is intact and makes all your reports so comforting for all of us who worry about you constantly. Every report is reassuringly upbeat in spite of your body failings.
    I love your posts, continue as long as you can, please.

  12. Once more you surprise me with your generosity to us. Thank you again for letting me view life through your eyes and insights. Is it the writing itself or the process of writing that weighs you down? Would using voice recognition software be easier to put down your original thoughts and then edit it before publishing? Just my two cents as I am sitting here watching lazy flakes fall on the pile of 20″s of frozen wasteland that seem like they will never melt, and sending you hugs and warm wishes.

  13. Hey Ezra, you guys drive me crazy—-my stage 4 lc guy now with paralyzed tongue refusing to go to er– insists it is side effect from meds—10 days? YOU…who I watch and wait to hear from for how long? Men…you never change. (-:
    Like a long ago lover—so glad to finally hear from you. Please take care my unknown friend. Friended your runner in the race. Will be watching just for you. We will all be there for you.

    Peace Out My Friend~

  14. Ezra, I always type out a post here – and then erase it. And then type a different post – and then erase it….. All I ever really want to say is, I love you! And Hill! I think of you two often. I will always think of you…

  15. Thank you for this update. Thank you for making the effort and spending the energy on it that you could otherwise spend on yourself.

    You never cease to amaze.

    Big love to you and yours.

  16. been following you for a couple years now. 13 year survivor myself. your posts have made me laugh and cry, reminded me of what’s important. i look forward to your posts and glad to read you’re still on the planet

  17. Hey Ezra, thanks for sharing your story with the world… it is beyond inspiring. Just out of curiosity, what frame did you guys use for Andrew’s 29er build?

  18. We’ve been enjoying watching the Olympics, too! It’s cool that you have some direct ties to the cross country scene. Even cooler that you have family racing. I was wondering what you and your brother were thinking as the NBC commentators were getting into the nitty gritty on ski shape and wax, while trying to explain the surprising showing from the Norwegians!

    Anyway, great to hear from you! Your productivity is simply awesome.

  19. Thanks for writing these things. I have sent excerpts to friends. Amy Caldwell’s sister Sara is a good friend of mine, and you come up in conversation from time to time.

  20. Thinking of you mate!

    International mountainbike festival at your house (with splendid food and good drink of course). Wished I could be there.

    What frame did you suggest for Andrew?

  21. Ezra, My mother was asking about you last weekend and I realized it’s been quite a while since you’ve posted. How are you? I know you were losing strength in your hand and that maybe you are having trouble typing. I hope that is not so.
    Hoping for an update soon, I miss your voice. I wish you Spring!

  22. Hey Ez & Hill,

    Much love and warmth to you from Chicago. You were asked about before the March Chicago Critical Mass ride. Love from them, too!


  23. Want to say thank you for all of this. I’m not much of a writer and as I try to word how amazing this all is- I just don’t have the words.
    You’re immune to wedgies, breathing and making life keeping bitter sweeter! Courage is a dish best served with muster and you’ve got flavor and the garnish to jiggitty boot. A simple recipe from me to you- radishes, rinsed and cut half- dipped like chips in dip in beet infused horseradish.
    I was searching cargo bikes a while ago and saw the mention of this site. Love your crate epiphany on your nose bike mkiii- really amazing! Read once that the reason the big delivery crate bike disappeared after the world wars is because schwinn was interested in branding, copyrights, and patents, and tried to make sure others would not build “their” bike. Love that you found out later many were trying things of this utility nature already. Cargo love! The movement is rolling along…
    Visited this site today for the first time fueled by a fear of cancer brewing in me recently and found myself reading all of it in one very long sitting. I’m in this weird place were my health insurance hasn’t kicked in yet and haven’t had any for years. Pondering what may be come. Have been seeing a chiropractor for a few months. The effects have astonished me. When I read about your herniated disks, loss of feeling, and the inability to find a stretch to work something out- I just thought, it might really help you feel a bit better. Have you seen the Coen brothers’ “The Naked Man”? Accupressure for better function.
    Have used food remedies on myself over the years with pretty good luck. Been kicking a cold or flu’s ass with garlic, ginger, lemon, and cayenne for years- friends have told me to add some whiskey too. I’m not one trust new-age bullshit blindly- but doing some reading on cayenne, turmeric, beets, acid/ alkaline, pro-biotic- makes me think it’s worth a try- not just soul or comfort food- but food as nutritional medicine, the spice of life adding to the quality of life- is worth a shot. Sorry. Not trying to be weirdly preachy.
    Many years ago I had a sizeable burn on my lower leg- which swelled to the size of by thigh, and the most painful part was when after being bed ridden with instructions to rest and keep it elevated- I’d have to get up to pee or do anything, and the blood would be forced by gravity back into my swollen lower leg and I’d just shudder and seize with pain as couldn’t stomach the pain meds and just tried to deal. I know this is nothing compared to what you must be feeling, but I share this because it taught me something. Breath through the pain you hear. Well I noticed as I was trying to breathe through intense pain and it didn’t seem to be helping (much of theses moments) I’d find myself panic breathing through the pain, and I guess to try to distract myself, I started whistling- and I noticed that when I was at my worst, the difference between a self induced distress sound and a self induced positive sound made all the difference in the world.
    Thank you so much for sharing your experience.


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