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: hillcaldwell@gmail.com and Sam: samueldnewman@gmail.com

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: https://secure.qgiv.com/for/rec 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: www.vnsny.org/community/support-vnsny/donate; 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.




Too funny not to share.


I went back and read my last post and I’m amazed that it is even as coherent as it is.  I was sitting in the office writing that post, with fairly constant interruption..  from my step father, sitting in his rocking chair in my folks living room by the fireplace where we were watching the football game, wondering if he could fetch me a drink.. “No thanks, I’m fine for now.”  From Hill who was preparing a shopping list for the grocery store, but had in fact left for the store at least half an hour earlier.  There were other interruptions that I can’t remember now, all equally confusing in their quality of realism AND their obvious absurdity.  I was alone in the room.  The room was our office, and not my parents living room.  And yet I was having the most vivid interactions with people who weren’t there.  I was sleepy for sure.  Beginning to doze off, and yet these interactions didn’t have the quality of dreams.  I was AWAKE as they happened.. (but I just said I was beginning to doze off..?)  Crap.  It’s happening to me again.  I’m going to go get another cup of coffee.  I’d like to get this post out so I can get to the shop and play on my milling machine!  And WHY on earth does Hill have a black eye??  And WHAT is funny about it???

Ok.  I have coffee.

After finishing that post, or ending it at any rate, I went into the bedroom to have a nap.  Hill intercepted me on the way there, “Are you all right, baby!?”  I had sent her a text a little earlier that said “I’m hallucinating a little.  You’re at Fairway, right?”

“Yeah.  I’m fine, I think, I just need to have a rest.”  I wandered into the bedroom and she followed me.  It wasn’t until she was lying down on the bed that I noticed, or maybe she pointed out, that she had a black eye, or a quickly developing one anyway.  She had slipped on the ice on the way home from the grocery store and fallen on her face..  Her hands have been asked where they were at the time, and they’re pleading the 5th (in her pockets keeping warm, I suspect).

We both fell asleep.

At some point during the nap I was woken up by the washing machine trying to shake itself  to pieces and take most of the surrounding cabinetry with it.  An unbalanced load, causing the machine to shift back forth up down 3 or 4 inches at a time (a problem that has been there for a while, but keeps getting worse).  Real or hallucination.  I can’t be sure, but I replaced the washing machine this week just in case.

I went back to sleep.  The next time I woke up it was dark.  I had no idea what day or time it was.  I also had no idea why I was soaking wet.  I figured that out quickly enough, though and thought, “shit shit, I hope I haven’t peed all over Hill!!”  That’s when I noticed that Hill wasn’t in the bed..   and that I hadn’t been IN the bed either really, rather on top of it.  AND I was fully dressed (and fully soaked in urine..   as was the bed under me).  AHA!  This was a nap!  It all started to come back to me.

Now.  This was not a first (but certainly a most dramatic).  For the last week or so, something strange had been happening to me in the night.  I’d wake up to go pee, sometimes with some urgency, other times not as much, but I’d go rushing to the bathroom to pee.  Sometimes a dribble, sometimes a fire hose.  I’d head back to bed and climb in only to discover that there was a wet spot in the bed!  WTF!  Truly confusing.  I came to the conclusion that the effort of sitting up maybe was forcing a little out as I left the bed, and I was finding the puddle when I returned.  Hmm.  Or maybe I was just wetting the bed and not realizing it until I was awake enough to.  THIS, though.  This was a new level.  I had woken up in a true puddle of piss.

Curiously, in the last week or so I’d also been noticing that even while I was awake, my body wasn’t really sending my brain a very strong signal telling me it was time to pee.  Almost like I’d just have this back of the head notion that it MIGHT be time, and run to the bathroom JUST in time to avoid total disaster.

Peeing has been strange for quite some time now.  First radiation.  Then surgeries.  Damaged nerves.  All to be expected.  Now add growing tumors, and all bets are off.  But up until this last week it had all been manageable.  Suddenly now, I was wetting the bed, AND not being able to trust that while I was awake I’d get the message in time, or at all!  In the somewhat vain hope that this might be the side effect of some combination of medications that I was on, I wrote to my doc.

This was her response.

It sounds like neurogenic bladder with atonia of the bladder sphincter, which is an expected development of the sacral plexopathy resulting from pelvic tumor involvement. Unfortunately it is not a side effect of any of the medications you are taking, but rather an indication of disease progression in the pelvis.

There are no pharmacological solutions for it.
At night you can use a Texas (condom catheter) to avoid getting wet and to be able to sleep. During the day, unless you do self catheterization several times a day, to avoid allowing the bladder to fill to a level that triggers spontaneous emptying, there is not much else you can do. There are pull-ups for adults that are not as undignifying as the diapers. They are thinner and unnoticeable under your pants.

The other not so convenient solution is to have an indwelling catheter attached to a leg bag that would constantly drain the urine out of the bladder.

I wept.

Not so much because of the new practical considerations to be taken on, but because once again I was having symptoms which simply pointed to the progression of the disease.  First the arm (doing worse all the time, thanks for asking), and now, a week later, my penis!  Et tu?

I had a moment of feeling completely overwhelmed by the whole thing.  I feel as though I’ve taken a lot on over the last 5 years (I say “I,” when obviously I should say “we.”  First the we that is me and Hill..  then the we that is me and my family/close friends..  all those who are affected by these changes. Perhaps you can simply read that as implied).  I’ve had to take a lot on.  I’ve had to make major adjustments.  In the past, though, those major adjustments, like learning to shit in a bag for instance, have come with the promise of survival!  Do this, and you will probably have a normally long life.  This new stuff is just the opposite.  “Here you go.. here’s a sucky new thing to get used to.. AND the sucky new thing is a good sign that the disease is progressing rapidly in your body!  AND the sucky new thing is likely to get worse not better”

“Oh!!   Cool!   Thanks!”  I don’t know how to keep that up.   So I wept instead.

My mother picked up some pull ups for me at the drug store.  Putting one on reminded me a little of the first time I ever put on a dance belt..  Story for another time.  I was in the bathroom trying to figure the fucking thing out… Hill in bed already waiting for me to come and watch our TV show.  Everything about it was gross.  Synthetic, bulky, poorly designed..  Not to mention, a FUCKING DIAPER!!!!   I wept.   I don’t even wear underwear.  I sure as shit wasn’t going to wear this.  I ripped it off.  Weeping.

It wasn’t until the next day that I got the ray of sunshine I needed.  I had told my hospice nurse that the texas/condom catheter sounded like something I’d like to try, and she had ordered some up.  The whole thing had enough of a Rube Goldberg appeal to it that I couldn’t resist.  The packaging alone had me grinning.  I mean “Freedom Cath.”  Yeeeeee haw!!!!   Rebel yell.  And the illustrations for how to?  I can’t NOT share.


That’s the shape of things gang.   I’m hoping that these signs that disease is progressing rapidly slow down a little!  I could use a break, AND I’ve already got the message!  “yeah!  I heard!  progressing.  rapidly.  got it.”

Night time is sorted out.  It’s a little baroque, but the freedom cath works for night time.  I’m still working on the right daytime solution (I’m not looking for a flood of advice here gang..  “he said ‘Flood.’  te heeee!”  I’m sure that I’ll find the right solution for me).  It IS a real limitation.  Last night I walked the 5 blocks to the store and on the way home had to dive between a couple of parked cars to avoid wetting myself.  Hardly had any warning at all.  It makes a trip down to the pool hall an impossibility.  Of course, I can’t feel half of my bridge hand anyway.

On a brighter note, I’m having a ball in the shop.  Finding ways to get the most out of that left hand, and allowing the right hand and the machines to do the rest.  I’m making a clamping fixture for making picture frames that will really be the art piece on its own.  I may not even make any frames.  We’ll see.