My wife Tina and I have wondered, from time to time, why we do not have more friends. Both of us were popular in school, but now the number of our acquaintances is small, and friends are fewer still. Some of this is due to Tina’s multiple sclerosis, which has left her bedridden for 18 years, quadriplegic and ventilator-dependent for the past eight.
Getting out and about is difficult. Serious travel is almost impossible, limiting the distance we can go to meet friends and family. They can visit us, but all are aware of Tina’s special needs and are careful, perhaps unnecessarily, not to interfere with our daily medical routine.
When we do enter the “outside world,” some people react warmly and considerately, while others are clearly uncomfortable, assuming they have little in common with us or fearing they might offend, even with well-meant words. It’s easier for them to look away or remain silent. Sometimes, I can make a joke that helps them feel more at ease, “putting the humor back into quadriplegia.” And once we get talking, these strangers sometimes tell us of friends or relatives with MS or similar conditions. They tend to remain strangers, though, and I cannot think of one whom we met casually who then followed up to get to know us better. Fortunately, neither Tina nor I mind such loss greatly.
Not all of this disconnection is due to MS. Decades ago, Vance Packard described America as A Nation of Strangers, who have little time for, and little in common with, each other. Today, loneliness is said to be endemic among today’s elderly. “Old age is not for sissies.”
Tina and I do connect with our nurses. We did connect with people in our MS support group, a group that became too far apart and, in fact, is no longer functioning. Even in such groups, the specter of being paraplegic or quadriplegic can make the newly diagnosed ill at ease with those whose MS has progressed.
Concern for Tina’s health may have made our immediate family members more connected with us than they would have been otherwise. Hard to say.
Tina and I have been in love for nearly a half century, married now for over 27 years. When I gave a talk recently about my book, Ting and I: A Memoir of Love, Courage and Devotion, an attendee asked me afterward for the secrets of a happy marriage under such conditions. Briefly at a loss for words, I realized what had worked for us: “Marry someone who deserves your devotion … and don’t fuss over little things.” MS puts much else into perspective.