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.
Monday, October 7, 2013
Friday, July 26, 2013
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
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
Friday, September 21, 2012
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.
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 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.
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