Archive for February, 2014

A day of rest

 

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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.

 

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February

 

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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.

 

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