tag:blogger.com,1999:blog-88141940676340538252024-02-21T10:19:14.012-08:00The Grateful WillUnknownnoreply@blogger.comBlogger30125tag:blogger.com,1999:blog-8814194067634053825.post-32157010868086489812015-06-18T17:00:00.000-07:002015-06-18T17:00:39.408-07:00ProgressIn 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!<br />
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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!<br />
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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:<br />
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<a href="http://www.nbcnews.com/nightly-news/double-arm-transplant-recipient-restoration-my-life-n376766">A Restoration</a><br />
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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!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-87947286192654672092014-09-02T14:18:00.000-07:002014-09-02T14:19:04.640-07:00Three YearsToday, 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.<br />
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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.<br />
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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.<br />
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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.)<br />
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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.<br />
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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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-43902497611481263152013-10-07T11:26:00.000-07:002013-10-07T11:26:00.869-07:00BooIt'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....<br />
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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.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8814194067634053825.post-55947307430485432052013-07-26T10:01:00.001-07:002013-07-26T10:01:29.825-07:00In the NewsThere'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! <br />
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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!<br />
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<a href="http://commonhealth.wbur.org/2013/07/humor-disability-lost-limbs">http://commonhealth.wbur.org/2013/07/humor-disability-lost-limbs</a><br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-44509953555925228372012-09-21T15:01:00.002-07:002012-09-21T15:04:08.143-07:00A Call to ArmsSince 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!)<br />
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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!<br />
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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.<br />
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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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-83297853065331976812012-09-14T15:24:00.000-07:002012-09-14T15:24:22.215-07:00Indefinite TimeIn 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.<br />
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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.<br />
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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.)<br />
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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.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8814194067634053825.post-21706348497161167222012-04-09T13:44:00.000-07:002012-04-09T13:44:42.005-07:00Sudden 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!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8814194067634053825.post-72572781667039781672012-04-08T19:23:00.000-07:002012-04-08T19:23:13.057-07:00Post-CinemathequeThanks to all who came out to Friday's screening. It was wonderful to see so many old friends, students, and professors. And it was a special treat to hear Michael Tully speak about "Septien," which played very well to an appreciative audience.<br />
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Of course, being at BU was not without some bittersweet moments, especially in getting around campus in my wheelchair: a new perspective on familiar territory. I have to be honest here: before I left Boston for Montana, I halfheartedly felt, almost as a vow, that I wouldn't set foot on campus again; and now that I don't have a foot to set, that vow turns out to be one of life's bitter ironies, along the "be careful what you wish for, because it may just happen" line. On the whole, though, I was glad to be back, and especially glad to see so many familiar faces.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-92154240964354885292012-04-05T08:51:00.000-07:002012-04-05T08:51:49.337-07:00Cinematheque EventTomorrow, April 6th, at 7 PM, there will be a screening of my friend Michael Tully's movie "Septien" at the BU George Sherman Union auditorium (second floor). The screening is in my honor, and there will be a chance, if you wish, to donate money to my cause. (A website has been set up to accept donations at: http://lautzenheiserfund.wordpress.com/) And if you don't wish, please come to see a neat independent movie anyway. (It was Michael who led the charge for me to see "Beasts of the Southern Wild" when I was in Salt Lake City.)<br />
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In other news, I am supposed to get my arm prostheses back today from refitting; and my legs are almost, finally, healed from their wounds, which means that perhaps leg prostheses won't be far behind.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-28260062788507439642012-03-02T17:28:00.000-08:002012-03-02T17:28:36.663-08:00Mem-or-ies Are Made Of ThisBefore coming to Boston for rehab, I had been told by others who had made the transition from an intensive care situation to a rehabilitation setting to prepare myself for culture shock; and common sense too tells one that, as the aims and goals of these units are different, one might find other significant differences in tenor, practices, and so on. These differences have indeed been felt by me since coming to Boston on the 25th of January. The most grievous difference, though, has been the loss in my daily life of all of my dear friends in Salt Lake City -- friends who saved my life, who nursed me through surgeries and recoveries and pushed me through therapies physical and occupational, who helped me through the days and oversaw my sleepless and difficult as well as my easy nights, who were the most generous and kind and good-humored women and men a poor sufferer like me could have had during such a challenging time: their professionalism and empathy made the realities of the Burn Unit easier to bear.<br />
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During my recovery in Salt Lake City, I was granted a few leaves of absence from the hospital. One such trip, to see "Mission: Impossible," I already wrote about. An earlier excursion, though, I haven't yet mentioned: that was to Whole Foods in Salt Lake City. I took the TRAX to the store accompanied by my nurses Thane and Lois as well as Thane's wife Michelle.<br />
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The store was vast and overwhelming, particularly for someone such as myself who had been in an ICU for many days but I met up with other friends, Eduardo and Jen, and Jen's mother Corine along with another nurse Jill; and Eduardo guided me through the myriad options for lunch to select a tasty Indian-inspired meal.<br />
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Another excursion a few days before leaving Salt Lake City was to a screening of a Sundance movie, "Beasts of the Southern Wild." In front of the movie theater there was a somewhat eerie sculpture, especially for an amputee:<br />
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The movie was great and everyone I went with, all of whom were staff at the burn center and had by then become my dear friends, enjoyed it. "Beasts" went on to win the grand jury prize of the festival.<br />
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The last excursion I went on was to the Salt Lake City library, building designed by Moshe Safdie. This trip I took with my nurse Mary and my social worker Kristen as well as my brother Tom who had come to collect me, to bring me back to Boston.<br />
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<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh9n1WO42o-s-KaNlabAQHmbjjGU8qaKGFg8JlqguLhpN8j7Xz4APMmamk1b7VX-G8SPuAT2xCM5KUNJHWIyXjKefetE3Rtj0P58u-CfY47L2fiMMOscceVGPi7Gip62y7QvcKajcLWLs/s1600/outsidepose.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh9n1WO42o-s-KaNlabAQHmbjjGU8qaKGFg8JlqguLhpN8j7Xz4APMmamk1b7VX-G8SPuAT2xCM5KUNJHWIyXjKefetE3Rtj0P58u-CfY47L2fiMMOscceVGPi7Gip62y7QvcKajcLWLs/s320/outsidepose.jpeg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh41_PHWXqWwSk_4BHgeNukiUaZVk6lxszAeoq66ejVhEuWHtuESG9JG1hNn2pJ0d-Yi0bxa2D2eclk5rEBY9-IjS8k6hRFiSZOF85f6FUK1YqAmneJ4SVJKcfkJDbITXXHm47t5KsT6K0/s1600/threesmile.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh41_PHWXqWwSk_4BHgeNukiUaZVk6lxszAeoq66ejVhEuWHtuESG9JG1hNn2pJ0d-Yi0bxa2D2eclk5rEBY9-IjS8k6hRFiSZOF85f6FUK1YqAmneJ4SVJKcfkJDbITXXHm47t5KsT6K0/s320/threesmile.jpeg" width="320" /></a></div><br />
In Salt Lake City I didn't need to leave my room to enjoy the company of my friends. One of my doctors, Dr. Amalia Cochran, brought her dog Nikita ("Kita"):<br />
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And sometimes a picture tells a story that words cannot:<br />
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The only good thing about leaving Salt Lake City is knowing that I have so many kind faces to see again when I go back.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivWgonjH2AibaUOU7bsvX7ruGbcrpJxNcp_2rKm_C2e7NIVMyO3fnp7B1fVO_TQ6GtcEIN7jU8iQ4mSoT4fsvhNezgqAPRLJ9r0af1xNf_m0p4yuGnlug1XtL_i13rxlotkKrP5xlGWQs/s1600/plane.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivWgonjH2AibaUOU7bsvX7ruGbcrpJxNcp_2rKm_C2e7NIVMyO3fnp7B1fVO_TQ6GtcEIN7jU8iQ4mSoT4fsvhNezgqAPRLJ9r0af1xNf_m0p4yuGnlug1XtL_i13rxlotkKrP5xlGWQs/s320/plane.jpeg" width="320" /></a></div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8814194067634053825.post-58993868078582852302012-02-26T17:30:00.001-08:002012-02-26T17:30:56.353-08:00One Month In (A Quick Update)Boston: it still thrills me to see the city out the window of my room in the hospital, even though I've been back in town for a month. I miss my Salt Lake City friends keenly. Friends and family here -- my main reason for returning East -- have been huge supports.
Rehabilitation: physical therapy is going well; occupational therapy is too, although it has been slowed by a setback with my prostheses.
Blog: it has been a challenge over the past month of rehabilitation to find a moment to update the blog... and some computer issues still need to be worked out: I hope to create a longer post than this one before next week.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8814194067634053825.post-67676807932061965392012-01-24T13:23:00.000-08:002012-01-24T19:39:39.156-08:00Fast, TravelI just learned that I will be discharged from the Burn Unit tomorrow, my 140th day in Salt Lake City, and will be flying to Boston, to take residence at the Center for Rehabilitation at Boston Medical Center. This news comes to me quickly, not as a surprise exactly, but the pieces that were in suspense fell into place with great rapidity this afternoon. I don't have time to write more now: too much to prepare and too many goodbyes to say.Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-8814194067634053825.post-86999006589758155052012-01-19T18:05:00.001-08:002012-01-19T18:22:38.656-08:00Snowy Landscape<div style="margin: 0 0 10px 0; padding: 0; font-size: 0.8em; line-height: 1.6em;"><a href="http://www.flickr.com/photos/72784969@N06/6615550113/" title="View 2"><img src="http://farm8.staticflickr.com/7142/6615550113_489630108b.jpg" alt="View 2 by gratefulwill" /></a><br />
<span style="margin: 0;"><a href="http://www.flickr.com/photos/72784969@N06/6615550113/">View 2</a>, a photo by <a href="http://www.flickr.com/photos/72784969@N06/">gratefulwill</a> on Flickr.</span></div><p>Angel also took this picture of the view outside the window of room 23, which has been my home for about 135 days now. The changing look of the mountains has been to me what perhaps the haystacks were to Monet.</p>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8814194067634053825.post-47272101914988107112012-01-19T17:37:00.001-08:002012-01-19T17:37:11.698-08:00Golden Landscape<div style="margin: 0 0 10px 0; padding: 0; font-size: 0.8em; line-height: 1.6em;"><a href="http://www.flickr.com/photos/72784969@N06/6615550689/" title="View 1"><img src="http://farm8.staticflickr.com/7152/6615550689_e2f667b2a0.jpg" alt="View 1 by gratefulwill" /></a><br/><span style="margin: 0;"><a href="http://www.flickr.com/photos/72784969@N06/6615550689/">View 1</a>, a photo by <a href="http://www.flickr.com/photos/72784969@N06/">gratefulwill</a> on Flickr.</span></div><p>Angel took this picture of the view outside my hospital room window. It's of the Wasatch Mountain foothills. I suppose that as long as one has to lie in a bed, sometimes in suffering and always working on healing, one should be glad to have such a view.</p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8814194067634053825.post-79121951921106595692012-01-12T16:51:00.000-08:002012-01-12T16:51:09.237-08:00The Ball Takes Another BounceWhile I certainly had trepidation, even dread, about the surgery on Tuesday to amputate my left knee, the dozens and dozens of messages of support that I received from all of you, my friends, carried me into it with relative good cheer and energy: thanks. (I was also much helped by Jen and Eduardo, dear friends from the Burn Unit, who visited with me up to the time I went into the OR.) The operation went well; however, post-surgical pain, something that also accompanied the patellectomies, has rather thrown me for the past forty-eight hours. I am glad to say that, while initially I understood what a spiral-sliced ham must feel like, my leg pain has lately subsided somewhat. This easing off has allowed me to appreciate the presence of another dear friend, Prof. Fitzgerald, who arrived yesterday. Lucky him (ha ha), as he will get to see me through yet another surgery tomorrow: certain areas of my legs require auto-grafting, the placement of my own skin over open wounds. If tomorrow's surgery is a success, I will only need to heal before heading on to Boston for rehabilitation. Let us hope, therefore, that it will be my last operation.<br />
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One other thing: let us also hope that if the timing of my healing allows it, I might be able to attend a Sundance screening in Salt Lake City! (This time, I'll either avoid the trolley system or go to an afternoon screening!)Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8814194067634053825.post-58782674149528445862012-01-08T21:53:00.000-08:002012-01-08T21:53:00.846-08:00New Year, New SurgeryTwo years ago, it was a great pleasure to welcome 2010 from the vantage point of Moca, Puerto Rico with Angel; and no less pleasant were the following days, which were filled with beach excursions, pig roasts, and Twelfth Night fireworks. This year, alone, watching the change to 2012 wasn't nearly as special, as it seemed like just another night at the Burn Unit. A few evenings later, however, provided a bit of an adventure. Accompanied by my wonderful nurse Jill and the social worker Ann, I had a leave of absence from the hospital to see a movie at a local theater. Joining up with a couple of other friendly workers from the unit, we took in a 7 PM showing of "Mission: Impossible -- Ghost Protocol." (I enjoyed the movie -- director Brad Bird carried some zing over from "The Incredibles" and "Ratatouille.") Jill, Ann, and I shared some post-movie nibbles at a nearby restaurant... and then found, as we waited for the transfer train to take us back to the University Hospital, that we had missed the last one by several minutes. Our "mission: improbable" became getting me back to my room in one piece, without leaving my borrowed, couple-hundred-pound power wheelchair in the middle of downtown Salt Lake City. Fortunately, there is a local cab company that has ambulance-type vans, and I got back to the ward by 12:30... somewhat colder and later than expected, but intact. (Everyone should petition the Trax system to run the University Hospital line later than it goes at present.)<br />
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It turns out that I ought to have used the leave of absence as a chance to escape (just kidding), as the next morning I received some unwelcome news: my left knee, which has been in an immobilizer for the past month, recovering from a patellectomy, hasn't healed sufficiently to be saved. The disease is enough for my left knee to be amputated, a procedure that will take place on Tuesday (the 10th). I had thought I was through with such loss. The blow is mitigated only by the knowledge that having no knee is better, prosthesis- and other-wise, than having a useless sick one; and by the fact that my right knee, though without its patella, has held on. As I'm still processing the news and imagining my poor leg to be a few inches shorter than it is, this knowledge seems a little like cold comfort. Yet I'll be glad to be without left-knee pain, which has been bothering me lately.<br />
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"The art of losing isn't hard to master." -- Elizabeth BishopUnknownnoreply@blogger.com8tag:blogger.com,1999:blog-8814194067634053825.post-20845996334234882652011-12-24T17:13:00.001-08:002011-12-24T17:13:26.861-08:00Santa Claus Pretend<div style="margin: 0 0 10px 0; padding: 0; font-size: 0.8em; line-height: 1.6em;"><a href="http://www.flickr.com/photos/72784969@N06/6566546127/" title=" "><img src="http://farm8.staticflickr.com/7029/6566546127_68f696d0a0.jpg" alt=" by gratefulwill" /></a><br/><span style="margin: 0;"><a href="http://www.flickr.com/photos/72784969@N06/6566546127/"> </a>, a photo by <a href="http://www.flickr.com/photos/72784969@N06/">gratefulwill</a> on Flickr.</span></div><p>It's somewhat quiet in the Burn Center ICU tonight, which is good, as it allows the singing of the carolers down the hall to come through clearly. Gloria in Excelsis Deo.</p>Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-8814194067634053825.post-21753422248358302012011-12-05T23:16:00.000-08:002012-01-01T15:44:44.553-08:00Anchors to This Mortal CoilWhat I keep going over, in my mind, is that if I had collapsed anywhere but in the doctor's office on September 2nd, I would very likely be dead. If my doctor had sent me home, agreeing that I had a "muscle pull" instead of an infection, it would have been the same result. Hours later, on the emergency flight from Bozeman to Billings, as all my organs failed, so did my heart. But when the doctors tried to revive me, my body chose to live.<br />
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I don't think I have any memories of Billings; but once transferred to Salt Lake City, I remember a moment when I, barely coherent, muttered over and over to my vigilant identical-twin brother Tom, "I want to live, I want to live, I want to live..." <br />
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Tom's presence during the early days is hazy but vital for me -- vital in the sense that life felt like the only possibility when he was there, the alternative being too awful: a breaking of symmetry. My irrational thought ran, "I can't die, because he would be so alone." (This is not the place to go into the metaphysics of twinship, but it is true that tighter bonds are rare.)<br />
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Of course outsiders have their own take on events: one of my nurses, Martina, later said "I never expected to walk in the room and see someone who looked just like the patient standing next to the bed. It startled me! You almost think, 'God, is that a ghost?'" Perhaps more like that I was Tom's ghost, moving in and out of reality, or planes of existence.<br />
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My sister Mary was likewise present during some of the early days, and I only have a hazy vision of her departure, and her voice in my ear. My feeling of her presence and then absence became oddly, hallucinatorily, bound up with a dry erase board on my wall, which I interpreted as a large calendar that my sister left me as a gift. The calendar had on it shifting letters that variously indicated that it had something to do with Allison Kraus and "Bury My Heart at Wounded Knee." This strikes me as an amazing premonition, given the trouble that my knees have subsequently been causing me. (My right knee and leg will be much closer to healing after an operation this Wednesday, December 7th, to graft skin and close up various open areas, including my wide-open knee. My left knee will undergo a patellectomy during the same surgery.)<br />
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The other constant and crucial presence for me in the early days of my illness (and, as it would happen, rather far into my recovery) was Angel. Angel, from Providence. My dearest Angel. His keeping vigil, like my brother's, filled my heart and kept away some of the worst darkness during long and unsure nights.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-8814194067634053825.post-84963052278072537822011-12-01T19:51:00.000-08:002011-12-02T00:21:43.553-08:00Three Months: A Message From WillTomorrow marks the third month since my collapse. It's hard not to think of these days as time to reflect on what's happened to me since September 2nd. Yet such reflection is also overwhelming. My memories of the early days of my illness are patchy, which may be a blessing. One foggy incident in my mind involves a test in an x-ray machine. I couldn't understand why, as the machine moved and squeezed me into and out of the proper positioning, the nurses had chosen to leave overstuffed pillows covering my body, which made such movement extremely difficult. I felt claustrophobic and suffocated. But I realize now that the overstuffed pillows did not exist; they were me, as I had swollen up to 220 pounds with fluid. In turn, a memory of the nurses struggling with my bloated body, as they transferred me to a bed comes to my consciousness. Such memories are uncomfortable, yet they pale beside others, in which I can see my blackened and dying limbs, in which I try to move them and fail, in which my doctor asks me what I think about my right hand's potential for viability. A nurse reminds me that I responded to him, "At least I learned to play the violin." I'd like to write soon of my days of hallucinations -- those memories will have to wait for another post. <br />
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Reading my <a href="http://thegratefulwill.blogspot.com/2011/11/wills-story.html" target="_blank">brother's post</a> about the early days of my illness also makes me think of the tremendous outpouring of support that I had at that critical time. I'm certain that reading the cards sent by friends and hearing of all the good thoughts directed toward me contributed to my recovery: my kidney function picked up and gradually returned to normal. The team of kidney doctors and the dialysis machine have not been part of my routine for several weeks. <br />
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It's my intention with this blog to work out some of my memories, experiences, difficulties, and also my progress and hopes, as I adjust to this new life. I am so grateful to be alive.Unknownnoreply@blogger.com13tag:blogger.com,1999:blog-8814194067634053825.post-10180611226150804322011-11-26T00:49:00.000-08:002011-12-02T00:51:01.118-08:00Thanksgiving<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEIIGg1yx9z4xpASQNgX0fDTO8JKsGqN1zA6FirMooJwrx8Tt8ZgkdhN5fm6t7glTmZmcF8czTE5wTP2iXRAEjwf2zOmfOcnOuVy9uAvfSnrB2v3GM7dyvjS1QpYxpf9WmGRKd3UnUhJ8/s1600/390198_10150958434410106_695470105_21748206_747365940_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEIIGg1yx9z4xpASQNgX0fDTO8JKsGqN1zA6FirMooJwrx8Tt8ZgkdhN5fm6t7glTmZmcF8czTE5wTP2iXRAEjwf2zOmfOcnOuVy9uAvfSnrB2v3GM7dyvjS1QpYxpf9WmGRKd3UnUhJ8/s640/390198_10150958434410106_695470105_21748206_747365940_n.jpg" width="426" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisdK5vaya5Hu2wyTfH6O9k07NbRgOrgRkG3BGAgvv4_PA0f2H2IgaNQCwX8iP_fxUlE81yUR6XtkQkkQJgyMRudGAvalwvWToWKpn02GsgeDt1uuwInsRWhpIvsNOh9IorTMYtOxOAzc4/s1600/305417_10150958432245106_695470105_21748193_1288471031_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisdK5vaya5Hu2wyTfH6O9k07NbRgOrgRkG3BGAgvv4_PA0f2H2IgaNQCwX8iP_fxUlE81yUR6XtkQkkQJgyMRudGAvalwvWToWKpn02GsgeDt1uuwInsRWhpIvsNOh9IorTMYtOxOAzc4/s640/305417_10150958432245106_695470105_21748193_1288471031_n.jpg" width="640" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-7772759784124689662011-11-19T15:34:00.000-08:002011-11-23T15:35:26.755-08:00Self-Portrait<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPhZsBavpm8ggOWJF7-YvP4KAquipMf7zOqes6FO_lMhMnLQkMoY8WVwM-RLBhYxLk-LTvUBdZt6T-_NMqtInlgjKtFRHgUWB-5pkREaexJbfTiGzwQzKOjJ-V5TeDBV2bHNV-sY1t8EA/s1600/will9.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPhZsBavpm8ggOWJF7-YvP4KAquipMf7zOqes6FO_lMhMnLQkMoY8WVwM-RLBhYxLk-LTvUBdZt6T-_NMqtInlgjKtFRHgUWB-5pkREaexJbfTiGzwQzKOjJ-V5TeDBV2bHNV-sY1t8EA/s640/will9.jpg" width="480" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-56895175592501903822011-11-04T12:11:00.000-07:002011-11-23T12:31:50.337-08:00Fitting a Prosthesis<div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;">Phil from <a href="http://www.hanger.com/locations/Pages/Display.aspx?AVC=038600">Hanger Prosthetics </a> came to the hospital today to fit Will for a prosthetic for his right arm. The result here is a mold for a socket that forms one of the main components of the device.</div><div class="separator" style="clear: both; text-align: center;"><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9pmy8QB4Wl3cPO1FvlUc6ejS3jFamguvJM-TGh5FM0nM1r0frzNKRXA8NmCzdzBWjVqxd0pOM9JyCwGXKbtoH7FJGRIeg-OVYGGHb3dBqi5eV6rZTJqg-kLZVgw2luSMBxVuMVxyqHkQ/s1600/FxCam_1320442911045.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9pmy8QB4Wl3cPO1FvlUc6ejS3jFamguvJM-TGh5FM0nM1r0frzNKRXA8NmCzdzBWjVqxd0pOM9JyCwGXKbtoH7FJGRIeg-OVYGGHb3dBqi5eV6rZTJqg-kLZVgw2luSMBxVuMVxyqHkQ/s640/FxCam_1320442911045.jpg" width="425" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-46197550198652429102011-11-02T12:44:00.000-07:002011-11-23T12:46:13.569-08:00An Afternoon Stroll<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWXR0RW3cO6TQLFullhegWLiC1q69rrFM-zX2YM75DJojXxY92Fw2HE50sl2pXzxMZAma6r3BpP4nEUuUIk4XtvRhjVglcQqO85cbIF5eHIh8r3_XzO4G1wEJ8aBtftcP9CVYDSZgOwRk/s1600/FxCam_1320268146182.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWXR0RW3cO6TQLFullhegWLiC1q69rrFM-zX2YM75DJojXxY92Fw2HE50sl2pXzxMZAma6r3BpP4nEUuUIk4XtvRhjVglcQqO85cbIF5eHIh8r3_XzO4G1wEJ8aBtftcP9CVYDSZgOwRk/s640/FxCam_1320268146182.jpg" width="426" /></a></div><br />
<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">Took a little field trip today around the hospital and enjoyed the view of SLC. November marks Will's third month in Utah! Please keep the cards and emails to him coming.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8814194067634053825.post-12247335288572006722011-10-23T14:21:00.000-07:002011-11-23T14:26:14.828-08:00More Music<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">It is always amazing when strangers reach out. Thank you to <a href="http://www.myspace.com/corymon" target="_blank">Cory Mon & the Starlight Gospel</a> and <a href="http://DustinChristensen.com/" target="_blank">Dustin Christensen </a>for sharing their music with Will. </span><br />
<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: small;"><span class="Apple-style-span" style="font-size: 11px; line-height: 14px;"><br />
</span></span><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjokTBtsMKII7EjgSPdgm6E9K3B4KgXz7Qt7RIWAXFyI8wJ_8uFei7xq4xfZfO6VohZQPN5Cnjm01RfF0kjg-O316P0Ez4K8BFgPY9prnb-DPYix3GMtOECgSCOlgypAN9E5N4ki54Op3A/s1600/FxCam_1319324751178.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjokTBtsMKII7EjgSPdgm6E9K3B4KgXz7Qt7RIWAXFyI8wJ_8uFei7xq4xfZfO6VohZQPN5Cnjm01RfF0kjg-O316P0Ez4K8BFgPY9prnb-DPYix3GMtOECgSCOlgypAN9E5N4ki54Op3A/s640/FxCam_1319324751178.jpg" width="425" /></a></div><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: small;"><span class="Apple-style-span" style="font-size: 11px; line-height: 14px;">Click on the links to listen to their music.</span></span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8814194067634053825.post-16153528751406927742011-10-19T22:02:00.000-07:002011-11-09T22:20:57.472-08:00An Update...<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12px; line-height: 18px;"></span><br />
<div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Dear friends, family, and colleagues of Will-</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Thank you, thank you for your continued support of Will through e-mail, post, video, or other media. To you who have sent your thoughts, know that Will is buoyed by your heartfelt messages, so please keep them coming. The hospital staff collate all of the e-mails that are sent to Will via its website, and provide them to him each day or two. The positive energy that Will receives from these messages is tremendous, and they strengthen his determination to move forward with his life. I understand that there has been a lot of activity on Will's Facebook page, too, so that might also be a good way to send him a note, photo, etc.</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyqxlYOfMJE851p2A8o9hCoqgmrrp88oEKFYIT2CRF2Wsu2Tj3DnbnCnm8IJkOBwd1wwtib_j8JOEZLHEDmdfbWtv4MU8PZWDJtIm3IP2rlg_lKbegN4i1vj_RT2u32cwalm-TURmu7pI/s1600/307302_276439975709914_100000317421419_993851_1226430404_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyqxlYOfMJE851p2A8o9hCoqgmrrp88oEKFYIT2CRF2Wsu2Tj3DnbnCnm8IJkOBwd1wwtib_j8JOEZLHEDmdfbWtv4MU8PZWDJtIm3IP2rlg_lKbegN4i1vj_RT2u32cwalm-TURmu7pI/s320/307302_276439975709914_100000317421419_993851_1226430404_n.jpg" width="240" /></a>Much has happened since my last mass e-mail update, most of it challenging, but all trending toward recovery. Over the past month, Will has undergone two skin graft operations for extensive wounds to his legs, and a third for additional wounds on his hips and flanks. Very likely he will have one more graft operation to address remaining areas of dead tissue. Thus far we have avoided major setbacks, such as secondary infections, which has enabled Will to put his energy toward healing, and as a result his body has made great progress. For example, Will's kidneys, which had failed acutely during his initial Group A Strep infection, have staged a remarkable recovery, and last week, after many dialysis-free days, the renal team signaled that they have no further clinical need to follow Will's kidney function. Other significant milestones include: the start of physical therapy, increasing Will's strength and range of motion; the start of occupational therapy, including the fitting of basic prosthetics, enabling Will to feed himself a few bites at each meal and use an iPad, for examples; and a few free-wheeling trips on a wheelchair or cardiac chair beyond the ICU, both within the hospital and outside on fine-weather days. Will's hard work on his incentive spirometer has paid off to the extent that he no longer requires supplemental oxygen, and his parallel effort to take in as many calories as possible through food has eliminated the need for a feeding tube. Will's effort through all of this has been heroic, and though he is exhausted, he is getting stronger daily.</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">With this progress, conversations among Will's family and caregivers have turned to next steps: where will Will go for rehabilitation? Today, Will will meet with a prosthetic professional, and we will understand our options better following that meeting. Given the importance of friends and family in supporting a patient through rehabilitation, I am personally pulling for Will to go to the Spaulding facility in Boston, yet there are a number of issues that need to be settled before we know if that is even possible. I will update you all again when we make our next move.</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Additionally, I have returned to my family in western Massachusetts for the time being, and plan to return to Salt Lake City when Will is closer to being discharged from the hospital.</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Again, thank you for keeping Will in your thoughts, and for your friendship and support through this crisis.</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="font-size: 12px; line-height: 1.5em; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Best regards,</div><div><br />
</div><div>Tom L.</div>Unknownnoreply@blogger.com0