Friday, September 21, 2012
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
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
Sunday, April 8, 2012
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
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
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
Tuesday, January 24, 2012
Thursday, January 19, 2012
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
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
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