After we moved from Westchester County, NY, to our country home some forty miles north, we would sometimes learn of the situations faced by the members of our former multiple sclerosis support group. One woman is doing well, but her boyfriend has died of complications from MS. The husband of a care-giving spouse, we learned, spent much of his days during fair weather just sitting outside, looking at their garden. Not reading, not listening to music or news, just looking. We felt sorry for both husband and wife.
Approximately half of MS patients develop significant cognitive losses. As with physical impairments, these losses can be intermittent, so the care-giver does not know for sure the state of mind of the cared-for. “Know thyself,“ Socrates advised us; hard to do. Even harder is to know well other people, as we only partly glimpse what is in their minds. For our interactions with some MS patients, this problem is exacerbated: are they there?
When my most precious person in the world is thinking clearly, it is a delight. When she seems confused, then so am I. She will repeat the same phrase or sentence scores of times without pause. It is something she thought or something she has just heard. If I ask her a question, she replies to it briefly, then resumes her mantra. Perhaps she is too tired or the room is too hot. We do not know why she starts, nor why she ends.
Almost always when I enter her bedroom and greet her as my most precious person in the world, she responds, ”I love you with all my heart.” Often, she will then say it over and over again, lest I think she “never could recapture / The first fine careless rapture.“
She is there. So am I. We are there.
Douglas Winslow Cooper, Ph.D., a retired environmental physicist, lives in southern New York State with his beloved wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and mother of two. Tina was first diagnosed with MS in 1981 at the age of 37, and she has been quadriplegic and ventilator-dependent at home for almost eight years. Tina is the central figure in Dr. Cooper’s book, Ting and I: A Memoir of Love, Courage, and Devotion, available from Amazon. Barnes and Noble, or their website, tingandi.com.