Sitting near the ocean over the long 4th of July weekend I’m reading Granta 120, the Medicine issue, and the first prose piece I come to is M.J. Hyland’s Hardy Animal, the tale of her struggles after being diagnosed with multiple sclerosis.
As if I needed the reminder of how lucky I am. But of course I do -- my own transverse myelitis has many of the same symptoms as MS, but at least some of the possible prognoses are much more positive (never mind that at the moment I'm still in the limbo of uncertainty about the cause and anything could happen. We'll get back to that).
Hyland’s diagnosis shattered her sense of her self. She'd worked hard to overcome the toughness of her upbringing and that brought with it a certain (unjustified) sense of invulnerability. That her brain and body seemed to have turned against her undermined the carefully constructed self that she relied on. She felt isolated from everybody.
In contrast, here I am, in the strong embrace of these three women, who love me as well as one can be loved, with whom I am spending a lovely long weekend in exquisite surroundings. Despite all of my own neurotic worryings and insecurities, I'm pretty solid, and while I worry about the challenges of meeting my responsibilities, I haven’t been hollowed out the way that Hyland was.
My situation is severe, no doubt about it. But my sense of self is strong and the joys in my life are overflowing. Yes, the challenges of a physical impairment like this are huge. One day you're worrying about little more than putting on weight and trying to “get fit” and the next the very basics of reaching and moving and breathing are all called into question every moment of every day. Putting on the dress shirt and tie is a ten minute operation that requires all of my concentration and can leave me (briefly) exhausted. Suddenly the future is more uncertain than it has ever seemed to be. But the challenges fall into two distinct camps – the physical and the psychological. The psychological are far more important.
My father, and Lynn, my beloved, had little patience with the sentimental rhetoric of "fighting" disease. Lynn refuses to be labeled a “cancer survivor” as if that is the most singular thing she’s done with her life, and my Dad had no illusions about who was going to win the fight with the black robed figure in the corner of the room. The most important battle isn't with the physical disease -- it's with the temptation to fall into despair, to allow oneself to be defined by the struggle with the disease, to let the pain and the fear blind you to joy and delight and the love of those around you.
Two months before he died, my Dad and I went for a flight in a little bi-plane. His laughter, his glee when he cackled, “I’ve got nothing to lose! You should be worried,” are what characterize those last months. Lynn coming into the AAHSL meeting in a low-cut blouse with the X of the black tape clearly marking the radiation site so that people would feel permission to ask her how she was doing, changed the lives of some women. We know this, because they have told her, privately, their stories of how her example made them stronger and bolder when they had to face their own mortal crises. Lynn is in so many ways a very private person, but giving the finger to breast cancer in very public ways was the response that made the most sense to her.
It wasn’t their diseases that Lynn and my Dad were fighting. It was the terror lodged in their own hearts. It was the temptation to be absorbed by grief and loss and to become blinded to the beauty and joy that still exists around all of us. And they transcended. Two months after that plane ride my father was dead, the spectre in the corner having given him a few more graceful months than any of us expected, and leaving me with a lesson about dying as deeply profound as the lessons he'd given me about living.
For now Lynn is cancer free, but being a “cancer survivor” is among the least of her distinguishing characteristics. That was just one more darkness to make her way through, with grace and humor and gladness. Just one more along the way. What matters is the way she leans on love to vanquish the terror in the heart.