I have spent most of my life thinking that as I aged I would be the one taking care – of my partner who is 12 years older than I, of family members, and of beloved friends and mentors. I didn’t create a narrative of myself actually performing a caretaker’s tasks; I just always imagined myself happily cast in the caretaker’s role. For a while after my MS diagnosis, I made extraordinary attempts to keep the disease from obliterating that fantasy. I developed an appetite for representations of heroic MS patients who continue to function capably “despite it all.” I read article after article describing MS as a variable disease and willfully (mis)interpreted their message as a promise that my disability would, in all probability, be slight rather than profound. I visited online patient support groups and focused only on comments from people who were still employed, who could shop for themselves, drive, and do all or most of life’s daily work.
Of course I was cognizant of the fact that I was creating lies of omission. Of course I felt my body losing strength and function. Of course I could see that my fantasy of taking care of others was slowly being replaced by the reality that I needed more and more care from others. My response to all of this was fairly graceless: though I was keenly aware that being needed by others brought me great joy, I greedily held to the idea that no one would feel that kind of joy when I was the one in need. I whined to my partner that my increasing disability was not what she “signed up for,” and I nurtured the kind of narcissistic self-loathing that refuses to acknowledge the power of humbly receiving when you’d rather be giving. When my friends asked about my situation I tried to make light of my body’s slow but steady decline and the fear I felt about that experience. In these ways, I dishonored the love and generosity that my friends and family offered. Time and MS are powerful conspirators, though, and in my life they have focused most of their collaborative energy on changing the way I understand myself in relation to the people around me.
I think often about Therese Edell, a singer-songwriter who was a fixture in both local and national women’s music communities. Not long after I moved to Cincinnati I became aware of Therese and of the fact that she suffered from MS. Though I did not know her personally, I saw her many times, always accompanied by loving friends whose commitment to her was palpable. By the time I was aware of her, Therese was confined to a wheelchair and needed help with even the most basic physical movements. My partner, who had lived in Cincinnati and been active in the local women’s community for a decade before I arrived, explained that a group of people worked together to provide the care and social interaction that sustained Therese. Since my diagnosis, Therese has never been far from my mind; I have felt compassion at the early onset and fierce progression of her disease, fear that my own disease would be as cruel to me as hers was to her, and awe that she was able to build a life that deeply touched so many.
In her song “Oh My Friends” Therese acknowledges the constant help she received from the friends in her life and imagines that in “another time” she was there to help them out every time they “had to call.” I cannot claim the kind of spiritual resolve Therese expresses in “Oh My Friends”; I do not believe in the existence of a life before or after this one. That said, I share with Therese the experience of friends and loved ones who make this life “strong and worth it all.” Let me share just a few examples. Barely a day passes when I do not receive calls from friends who honestly want to know how I am. More than once friends and my daughter have used those rare “breaks” in their workdays to call me—just to say hello. A friend and neighbor who works as a manicurist comes to my home and does my nails every time I ask. I have developed online relationships with people (some of whom I have met in person and some of whom I have not) who “look” for me when I am out of touch for a while and who call to offer support or advice when I seem to need it. And even as they offer care and support, my friends and family respect me by acknowledging that I am more than my disease. People who were once my colleagues honor me by seeking my input on and responses to intellectual issues and ideas. My sister e-mails or texts “I love you” but refuses to let pass an opportunity to tease or laugh with me. Even as my partner helps me dress each morning, she jokes and gives me a hard time. The neurologist I see every three months listens carefully and compassionately when I describe the progression of my symptoms, but he also laughs with me and respects me by always seeking my input on the treatment options he offers.
When I began writing this post, I imagined it as a complaint against MS and its insistence on denying me opportunities to care for others in the ways I once hoped I would. I also imagined it as a kind of apology to the many friends and loved ones on whom I have in recent years become so dependent. That is, however, not where the writing has led me. As I have struggled to articulate how much I dislike feeling need and dependence, what has emerged is an insight I could not have recognized before: that in order to feel gratitude I must be willing to welcome care from the people I love in the same way that I would welcome the opportunity to care for them.