Progress

In my previous post, in September 2014, I wrote about being listed for arm-transplant surgery. "The Call" came in October, and since then, with recovery and rehabilitation, I have been hard at work. It has been an incredible and positively transformative experience, and I have been greatly helped through all the new challenges by Angel, my family, and many, many friends. We're especially appreciative of all the healthy, restorative meals that people brought (give me lentils and sweet potato every day!) and indeed continue to bring! We are so fortunate!

In November, right before Thanksgiving, we held a press conference at Brigham and Women's Hospital to announce the surgery. It was wonderful to embody the "Grateful Will" spirit so publicly, especially to thank the donor family, who remain anonymous to me. At the conference, I grabbed the chance to hug Angel with my new arms!

To see some of my progress in the eight-or-so months since my surgery, you just have to look at a video recently shot by Meghan Frank and George Itzhak of NBC:

A Restoration

I'm very glad that so many people are inspired by my story -- I hope that it will inspire people to be listed as organ donors!

Three Years

Today, September 2nd, 2014, is the third anniversary of my initial collapse in Bozeman, Montana.  I walked into the hospital that Friday morning unprepared for what would happen next: who would have guessed that I'd fall into the clutches of a group of horrible sadists?  They drugged me into unconsciousness, and pumped me so full of fluids I nearly drowned from the inside.  At night, they transported me across state lines -- I didn't know, they kept me so drugged.  They put me in a room that they wouldn't let me leave for five months, and cut off my hands and feet: I really couldn't get out of there, then.  At least twice a day, they'd come to my room, give me more drugs, some of which made me hallucinate, and they'd redo my bandages, ripping open all my wounds in the process.  And I was covered in wounds: on my arms, legs, back, stomach, flanks....  Sometimes I couldn't stop myself from screaming.  For a while, I was only allowed to eat through a tube in my nose.  They put a catheter into my bladder and another in my anus.  After some weeks, they allowed me to use a urinal and a bed pan.  For a month or two, they pumped my blood through a machine and back into me, colder than before.  Eventually, they opened one knee up and took out my patella, hobbling me further; and then, a month later, they did the same thing to the other.  Then they cut off my left knee anyway.  That's the kind of people I was with.

I think of these people all the time, especially around this time of year.  They fought so hard and with such strength to keep me alive as my body crashed, over and over.  They sustained me through all of the horrors.  The love I feel for them helps keep me going.

One really surprising development is that, since getting out of rehab in 2012, I've become a comedian.  I'd call it "stand up," but it's really "sit down," and, besides, I'm usually doing sketch comedy anyway: that way, I can only tell so many "man with no arms and legs" jokes.  Onstage, I've lost at a pie eating contest because I couldn't keep my hands behind my back; I've been unable to attend my own protest against World Sauntering Day, since the stage was inaccessible; and I've crawled across the floor on prostheses, since walking wasn't hard enough.  In conceiving these sketches and others, I've laughed hugely imagining how far we could push into inappropriateness, not to make me merely the butt of a cruel joke but also to jostle audiences into seeing more than my losses, to realize that we're all in this together.  It's been great fun so far.

A second surprising development is that I got connected to a team of surgeons at Brigham and Women's Hospital who, after more than a year of testing me, have added me to a donor-recipient list for arm transplants.  I've been on the list since mid-May, and the waiting process, as the facial transplant team lead Dr. Bodhan Pomahac says, is "uneasy."  The main hand-transplant surgeon, Dr. Simon Talbot, and Dr. Pomahac told me that waiting times for such transplants have been long lately. All I can do is wait, and try to live as normal a life as I can... but every phone call raises my pulse for a few moments, these days.  (Everyone who reads this: consider becoming an organ donor!  I want your arms... which are technically considered VCAs, vascularized component allografts... so: I want your VCAs!  No, I'm kidding: you should be an organ donor because, well, someone may as well get some use out of something that you don't need anymore.  I'm an organ donor myself: my hands are gone, but I still have a kidney, etc.)

The third ongoing development is working with my friend Robin Berghaus to document my recent experiences on camera.  Robin made a short film, "Stumped," which has been playing at festivals around the country.  I'm lucky to have been able to attend screenings at IFFBoston and by Skype at Mountainfilm in Aspen, and I hope to attend the Newburyport Documentary Festival screening in a couple of weeks.  Robin has continued to record footage for a feature-length movie that will include the transplants... so this is a long-term project.

After the transplants, I hope to be able to take a cross-country trip such as I've never done: heading west from Boston on I-90, to Chicago, to Madison, to Billings and Bozemen, out to the west coast, down the Pacific Coast Highway to Los Angeles, then back east to Salt Lake City.  I have a lot of people I want to see and to thank personally.

Boo

It's October, and my thoughts have turned to Halloween.  It turns out that one of the good points about limb loss is that it allows for all kinds of costumes that would otherwise not be possible.  Who else could be a pirate -- with a peg leg or two and a hook for a hand -- with such authenticity?  (My friend Dave, a unilateral leg amputee, once wore a pirate costume to a party, complete with a wooden peg leg.  Another attendee said to him, "It must be really painful to squeeze your foot into that!"  Dave responded, "Lady, you have no idea.") Unfortunately, I didn't start planning early enough to have a peg leg ready for this year... maybe for next year, though, when I hope to be walking better on prostheses than I am now anyway.  Another fun costume possibility is "zombie attack victim" or something like that: a bit gory, perhaps, but a good use of all these stumps, and it would be delightfully (for me!) shocking for people who don't know me....

Recently I passed the second-year anniversary of my initial infection, hospitalization, amputations, and so on.  To say that I'm now, health-wise, much better than I was then is an understatement -- and even from one year ago, I'm now stronger and more capable than I was.  I wouldn't say yet that I feel "whole": that's probably going to take a few more years.  But we take things day by day.  Tomorrow I have yet another surgery scheduled: a minor thing, correcting a non-functioning portacath.  It'll be good to have it working.

In the News

There's a lot to update here, as the last several months have been anything but dull.  I wasn't maintaining "blog silence" on purpose: accessibility issues were getting in the way!  However, today they seem to have resolved, for now, and I'm delighted to make this post to say that I'm in the news!

Certainly when I was in the hospital and in rehab I wouldn't have imagined joking publicly about my situation... though also certainly I shared some belly laughs with the good folks in Salt Lake and in Boston who were connected to my care.  Even a year ago, fresh out of the hospital and trying to settle into a new life, if someone had said I'd be "doing comedy" about losing my limbs, I'd have dismissed the idea.  And yet... here I am now, doing comedy, and planning to do more!

http://commonhealth.wbur.org/2013/07/humor-disability-lost-limbs

A Call to Arms

Since returning to Boston in late January, I've been told by several close friends that I need to be more upfront and less coy about asking for help.  While "help" doesn't need to be a euphemism for money, in this case money is of crucial importance: with medical expenses, the costs of furnishings and renovations to make the new apartment accessible and useable, and countless other items, I'm facing a huge outlay; and at the same time I'm now facing a low income based on Social Security Disability.  (Kids, don't lose your limbs!)

I'm hoping to raise, somehow, about eighty thousand dollars for current and imminent projects, purchases, and services.  To me, that is a big number; and I have no idea what my future needs might be.  It's staggering.  I owe deep thanks to everyone -- friends, family, colleagues, students, strangers -- who have already contributed: your support has been incredible.  Please spread the word to your friends, neighbors, and anyone else in your communities who might be able to help: I've added a "donate" link to the blog that goes to the official donation site.  (I'm not aware of fraudulent "Will Lautzenheiser Fund" sites, but I suppose low, unscrupulous people could make one.)  Gifts small and large are welcome!

There have been many people who have helped too with food, errands, visits, housework, moving....  We still need such help!  In the next few weeks, we expect major renovations to the kitchen -- anyone who'd be able to contribute a meal, it would be much appreciated.

Finally, if I haven't yet gotten back to you about an offer of help, please be patient with me: I'm still a little overwhelmed.

Indefinite Time

In an alternate history, one where an infection didn't ravage my body, if I had started a blog, I might have written a post about how my academic year was just starting up again.  The beats and rhythms of such a new beginning have been familiar to me for many years, as a student and as a teacher, and the stresses and excitement they carry, along with the wonderful feeling of potential, have always filled me with purpose.  This year, though, these beats and rhythms are playing on a frequency to which I'm no longer tuned.  Instead, these days, I'm unmoored, drifting around the first anniversaries of my entrance to the hospital (September 2nd), my organ failures and resuscitations, my arrival in Salt Lake City (September 7th), my initial amputations (September 12th)....  How much I enjoyed the first couple of days of teaching at MSU (despite the pain in my leg), and how much I looked forward to getting to know and working with the eager students of my production classes and my colleagues in the school: ach, lament, lament.  I just hope to be able to teach and to make movies again.

Perhaps some of the feeling of drift has to do with being unsettled in my new apartment.  Angel and I moved in to a great, accessible, centrally located condominium in Coolidge Corner, just one block away from my old apartment, on June 16th.  (Happy Bloomsday!) I'd been discharged from Spaulding Rehab on the 14th and -- thanks to my friends -- I was carried into my old, inaccessible place: so nice to be able to see it one last time.  Spaulding may have been first-rate in its therapists and nursing staff, but it turned out not to be a good place for writing; nor, though, has my post-rehab situation been better in that regard, as after being brought to the new apartment, I've seemed to think only -- between visits with doctors and therapists and prosthetists -- about renovations.  We needed some immediate work done, and hired a carpenter (who is also a poet) to widen the bathroom door to accommodate a wheelchair.  Simple... yet even this job took a few weeks.  We've been consulting with a renovator and contractor -- both helpful and understanding -- about necessary changes to the kitchen and bathroom to make things more functional for me than they are (as currently I'm independent with very few of my Activities of Daily Living), but we're still waiting for work to begin.  I'm not sure that any renovation project is without negative stress; it's just that this one is compounded by my disability.  I look forward to the time, I hope only a few months away, when we're not living out of boxes.  Patience, patience.

One partly amusing thing we've learned during our research into renovations for accessibility is that striving for independent functioning correlates with digging deeper into one's wallet.  It makes sense: a product that does everything for you automatically, at the touch of a (big, stump-sized) button or with a proximity-based wave; that requires little or no maintenance and cleans itself; and that otherwise performs tasks a person can't do himself, is going to cost more than the basic model. Yet before any of this debility hit me, I would have dismissed with ridicule the idea of buying, say, a [price redacted: it's obscene] toilet (not including all the plumbing costs to install it) with built-in bidet features, fans, self-flushing, etc., as an unnecessary luxury meant for some one-percenter too lazy (or too "proper") to wipe his or her own derrière.  Now, though, I'm trying to figure out how I can get just such a toilet.  Independence turns out to be expensive: it's the same with the bed, with cabinets, with appliances, with most everything... even with the phone.  (I'm now a rolling Apple commercial.)

When I got sick -- when I realized how sick I was and that I was getting struck with catastrophic losses -- I focused my energy just on living.  Survival wasn't assured.  At every stage, I had teams of incredible doctors and nurses as well as the strong support of my family and friends, and my own resources of imagination and education (though, of course, these were impaired and muddled by a flood of drugs).  When I came back to Boston, months later, I was still wounded.  Rehab expanded my energy from just living to living and improving.  And I did get better and stronger than I was in the ICU.  One-hundred and forty-one days later (seventy-six at BMC, sixty-five at Spaulding) (for a total of two-hundred and eighty-plus days in medical facilities, but who's counting?), I was discharged... which is when the real rehab began.  It is an ongoing project, reassembling my life and attempting to make an accommodating living space.  I'm still grateful for what I have and what others have given me; and I still require huge amounts of support from family, friends, colleagues, neighbors, strangers... anyone interested in, well, lending a hand.  I'm not sure how anyone who finds him or herself in a situation like mine could make it without such support.

Sudden Change!

Tomorrow, Tuesday, I am going to be transferred from BMC to Spaulding Rehab. Please come to visit me in my new situation, once I'm settled!