Life from a Maine perspective

It has been over a month since we last posted to our blog, so I want to try and catch our friends up on our lives and do so in as efficient a way as possible. If it comes across as an incoherent blur, our apologies (it has been).

We sent out an announcement of our move to Yarmouth, Maine several weeks ago. It was many things: a nightmare, a sense of relief, a retreat to a place that travels at a more moderate pace, a return to our family’s past as Summer residents of Chebeague Island, an ongoing project of re-creation. We could probably write a post about each of these in succession, but the details would be wearying.

The view east from Mackworth Island, a few miles southwest from our home, where Anne and I enjoyed a walk just after our move to Yarmouth

Our new home at 149 Main Street is coming into focus. We are still jettisoning furniture and possessions that simply will not fit into a space half the size of our home in Boston (note: if anyone is looking for a set of eight antique Windsor chairs, speak now before we turn them over to Skinner Auctions in Boston…). Last month we headed immediately into Portland and turned Deb loose on furniture and fabrics, her preternatural gift that always draws admiring comments from salespeople who work with her. And, just down Main Street from us, we found a lovely woman who does interior design and got to work repurposing several sentimental window treatments that have moved with us from Dedham to Lexington to Maine. The whole enterprise is a bigger project than either of us anticipated, closet systems go in today so we can take that off our list and gain several of our rooms back (as one example), but we can see the light at the end of the tunnel. Our immediate neighbors, both empty-nest transplants from Vermont, hosted a social-distance happy hour last week that was so much fun. And our market just down the street has fresh fish each afternoon that has comprised a good part of our diet and provides a good excuse for an afternoon stroll.

Moving away from Boston was not without its complications for Deb’s health care. We are primarily yoked to the Healey Center at MGH, but we added a new layer of complexity for on-the-ground support as a result of the move, and we are part of the way through this, but it has been a challenge. Deb returned to MGH for an overnight stay for placement of a Gastrostomy several weeks ago, and the healthcare team was predictably first-class and very compassionate. We have invested in a Boogie Board, and I will leave the research on those two items to the curious to investigate outside this posting. Our communication is moving into the realm I have already described in a previous post, and it is both challenging as it is enlightening. Drug trials have been a rollercoaster of anticipation and disappointment as Healey patients line up for Phase 3 cohorts with far more applicants than spaces available. The now-infamous NurOwn, from the Israeli company, BrainStorm Cell Therapeutics, looks like it will be available early in 2021. It is, in simple terms, autologous stem cell therapy and one of the real breakthroughs in ALS research.

(Friends have asked about the impact of Covid on ALS trials. The short answer: most of the life sciences companies have continued their research, but Covid is impacting trial protocols to the detriment of ALS patients who cannot afford delays. It has definitely impacted Deb's access to the hospital and her ALS team, further complicating the health care gauntlet.)

We celebrated a couple of birthdays following the tremendous sing-along in May that many of you joined, and we have treasured the opportunity to be closer to two of Stu’s siblings since moving to Maine as well as the opportunity to make a quick day trip to Crow Island on Little Sebago Lake when Deb’s brother Bill and his family were staying over the July 4th week at their Summer retreat. I used to think of this all as “Covid Time” as life seemed to monotonously move from one day into an undifferentiated next day, filled with worries about sanitizing groceries to plotting external trips to buy groceries with a precision that could be exhausting. I think it was the move and our trip down to MGH that made us both realize that life in a bubble was something to be both managed but rebelled against, and we needed to lighten our grip a little. Life is not a thing we can improve (or extend) by worshiping at the altar of perfectibility. Risk is something we need to accept judiciously at all times.

We celebrated two birthdays, one ancient and one youthful, standing in our new kitchen and with Paul sadly stuck in his apartment in Cambridge

It was in that spirit that we drove last Thursday to Chicago to witness Abbey and Ted as they exchanged vows on the rooftop of London House along the Chicago River. After considering two planes, two overnight sleeper trains, and five days in a car with corresponding nights in hotels along the way, we chose the last option. It was quite an adventure, living out of a cooler with prepared foods along the way; and we were able to deliver a rug that has graced our dining room(s) for nearly 30 years as a wedding gift to Abbey and Ted that will now be a part of their home(s) for the next 30 or more. They will be residing in Lincoln Park, reunited after a year’s separation.

Celebrating the marriage of Abbey and Ted from the cupola atop London House in Chicago

The London House rooftop cupola as seen from East Wacker Drive

The trip was not all Steely Dan and CSN&Y playlists. We listened to several dozen lectures and debates apropos to the current times and had many opportunities to challenge our sensibilities and think deeply about the cultural debate through which we are living and marveled at the world outside our car as we traversed seven states. Clearly, the arrival of Covid this year has been a difficult burden to lay atop our ongoing course. It has deprived us of mobility, walled us off from our friends, and added a level of risk to Deb’s treatment regimen both as Covid threatens as a pathogen and as it has upended treatments for other non-Covid patients that would have been challenging without the current rationing of access to our healthcare providers. However, we are now conversant in the ways of “telehealth”, and we have adapted as we must.

One of the more interesting conversations we listened to was between the Hoover Institution's Peter Robinson and Ross Douthat, a columnist for the New York Times and favorite commentator of Deb’s. He was describing a phenomenon from his new book where we see a pulling apart in our culture from those things that relate to “health and wealth” and those that connect to “purpose and meaning”. The former is actually getting most of our media’s attention, and seemingly the nation's, none more so than in the vicious and often pointless name-calling and blaming (and shaming) surrounding the pandemic. Severed from “purpose and meaning” much of our culture has taken up arms on either the side of health or wealth. And it is terribly sad to witness and not a little dispiriting to see our natures revealed in this way.

The forgotten core of human existence is found in purpose and meaning. In a crisis, it often gets thrown to the curb, but it is so essential to the daily ruminations in our own home that I cannot express it clearly in a short blog post. We are adapting our days to the constrained life we have been given, and we have witnessed the fear brought on by a novel virus that is just another weight placed on us during an already perilous time. In characteristic fashion, however, Deb declined to wear a mask during the wedding vows in Chicago this weekend, choosing to hug her daughter and new son-in-law saying “It’s worth the risk”. If truth be told, you cannot properly enjoy champagne through a mask. We elected not to venture out to restaurants; and, on Abbey's recommendations, enjoyed Mediterranean and Asian delivery on successive nights in Chicago (as well as watching Tom Hanks's newest movie "Greyhound"). And we stopped in Cambridge yesterday to share another hug, this time with Paul, from whom Deb has been separated since May.

As we grind through this period, we are trying to hold on to our humanity as so much of life is now boxed into discussions of science, drug trials, blood pressure readings, lung capacity, and things that are of little comfort or solace when held up to the purpose and meaning of our lives.

Please write to Deb. And schedule a Zoom with us. We love you all.

A rainbow greeted us upon our return to Massachusetts as we traveled east on the Mass Turnpike Monday afternoon approaching the end of our five-day odyssey