Today I did something I haven’t done for a year or more — I read the UU (Unitarian Universalist) World soon after it landed in our mailbox. I did not read it out of duty or professional commitment; for the first time in months, it beckoned my heart. Strange confession from someone officially categorized as a retired Unitarian Universalist minister, but an honest marker that perhaps my life has completed this latest circle at last.
Just over two years ago, as the sun marked its longest day in the northern hemisphere, I sat in front of an invited congregation and altered the very polity of my life. In short, I got married. Till that moment, polity changes were something I suggested, cajoled, imposed on others from an autonomous and somewhat superior detached position. From that moment on, polity changes rewrote my life so radically that for most of the time I wondered who I would be when the ride was over. for in taking the spouse my heart chose, I surrendered my life not only to her, but also to whatever her Huntington’s Disease would cast upon us together.
Marriage has been a wonderful polity advancement, except for this disease. She galloped up the aisle already in the grip of Stage Four, but with disciplined athleticism has pounded into every achievement physical therapy can offer. She doesn’t speak much these days, and not clearly when she does, but her mind and guts ring as strong as ever. Yesterday she reminded me that I had promised to take her to see the latest Star Trek movie in a theater. We spend lots of our time consuming news stories and listening to author talks and history lectures on C-Span, which ramps up my long ago international studies pursuits.
Pouring myself into her care, in order to continue enjoying her companionship, redirected the polity of my life into the community of people struggling with this and similar movement disorders/neurodegenerative diseases. For a long time, this diversion scared me. Could I retain my ties to UUism — especially without the means to attend Sunday worship (which I deeply, passionately miss)? If I spent so little time discussing UUism, imbibing its culture and habits, would it fall away from disuse?
Much to my amazement, UUism retained its ties to me. The Care Network checks on us regularly, and can be relied upon to keep her cheery and valued on the few occasions I tear myself away. Our contact visitor even came over and weeded one of our gardens one hot summer day, asking nothing in return! Meanwhile, a project I worked on years ago has become relevant again, and a small self-appointed subcommittee of the Women’s Alliance (my chosen small group ministry) has rallied to keep me either motivated or urged, while still respecting the challenges of the disease.
What completed that circle has been the addition of a marvelously self-reliant and highly-trained caregiver. My wife plans to stay at home for her entire journey with the disease, but having 34 hours a week of support and even replacement lets me get out of the same house. Mostly I just go into a separate part of it and read catalogs, watch Netflix documentaries and BBC murder mysteries. These I choose for their filming locations, and call them “scenery stories.” It turns out that lots of people do this, because you can go online and find out exactly where these places are, should you choose to visit. What I like is being able to visit them by going into another room, bringing my wife along, as it were, without leaving home.
But in this, our third year of marriage, when August brought its turn toward autumn and the back-to-school sales splashed over the screens, something familiar connected inside my circuits. Our Huntington’s Disease Support Association Walk takes place October 1, which means I have work to do in my new community. But there’s a Women’s Alliance meeting the first Wednesday of September, and this year, that feels like another place my new/old self belongs.