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.