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.
Friday, September 21, 2012
Friday, September 14, 2012
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.
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.
Monday, April 9, 2012
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!
Sunday, April 8, 2012
Post-Cinematheque
Thanks 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.
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.
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.
Thursday, April 5, 2012
Cinematheque Event
Tomorrow, 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.)
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.
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.
Friday, March 2, 2012
Mem-or-ies Are Made Of This
Before 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.
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.
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.
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:
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.
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.
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"):
And sometimes a picture tells a story that words cannot:
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.
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.
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.
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:
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.
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.
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"):
And sometimes a picture tells a story that words cannot:
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.
Sunday, February 26, 2012
One 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.
Tuesday, January 24, 2012
Fast, Travel
I 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.
Thursday, January 19, 2012
Snowy Landscape
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.
Golden Landscape
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.
Thursday, January 12, 2012
The Ball Takes Another Bounce
While 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.
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!)
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!)
Sunday, January 8, 2012
New Year, New Surgery
Two 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.)
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.
"The art of losing isn't hard to master." -- Elizabeth Bishop
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.
"The art of losing isn't hard to master." -- Elizabeth Bishop
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