When the end is in sight, the choices in our lives become telling, defining who we are and what really matters to us. Denise understands the reality that we die alone. She forces us to accept that each of us concocts a different formula for getting by as we grapple with serious illness. For some, maintaining a large community to offer support becomes important. Surrounding ourselves with other people offers solace. For me, reaching for the safety and warmth of family and friends has always been instinctive. For Denise, the search for solitude, a self-imposed isolation, is the modus operandi.
Many of us may see this as a way of hiding most appropriate for those who cannot bear to engage others. We judge isolation as wrong and emotional distance as cold. The sick, especially those close to dying, are supposed to be dependent and almost apologetic for their condition. They are expected to compensate for their abnormal state by being nice and deferential, grateful for any helping hand, welcoming of anyone who offers intimacy to one so broken.
Denise’s approach to her illness and a death not far down the road is anything but deferential. She requires independence without compromise, then resents being alone. She refuses to lean on others but does so with a stiff arm and an unspoken demand. In the few instances where she does reveal her neediness, she expresses anger at that need. This is a painful cycle. And while I worked hard to create a keep-your-distance intimacy between us, it was hard won. I simply could not identify with her method of coping, and it left me deeply confused.
Was I as rigid as she in my insistence that she be close on my terms? Aren’t we all at times trapped by our own rigidity? The sick should not have to be different. Or perhaps, they should be given greater leeway for forging their own path, frustrating though it may be for the rest of us.
We all require a level of patience that is in short supply in our busy lives. Being a friend to a mortally injured comrade is a commitment that takes time and levels of acceptance we may not have previously known. It is easy to decide that the Denises of the world are beyond caring because they seem to stand back from others.
A lasting image of Denise says otherwise. At a candlelight vigil in Washington, D.C., for the ALS fallen, Denise wept silently as she struggled to hold four flickering candles and repeated the names of lost friends over and over in a hoarse whisper. Clearly, I thought, this lady cares deeply. She reached out to the dead that night. Maybe her unwillingness to turn to the living says more about us than her.