Entering the room of someone wrestling with death is an act of invasion. These are intimate places shrouded with vulnerability and mystery. To come in carrying a camera seems sacrilegious. My sensitivity may have been heightened by my own diagnosis with a disease regarded as terminal, so that when I meet someone needing care I am looking into a mirror of my own future. But the overwhelming sense of these places is less of illness than of heroism... Into this story come the heroes of this book - and my heroes too - caregivers. When I ask if I may take their pictures, they wonder why. When I say they are the angels in our midst, they shake their heads in disbelief. They would be the last to think of themselves as heroic.
But if you've measured your own mortality, you've encountered some hard and doubting questions: Who will be there at the end, especially if it comes slowly? Who will demand that our pain be lessened, or soothe our lips with ice? Who will shepherd us through our terrors? Who will be patient with us, and treat us to the dignity we have lost?
Caregivers may appear when we least expect them. I was working through this book and through despondency at the same time. In public, I said my depression is a side effect of prescriptions. Privately I knew better. Being sick Hadn't helped, but neither had it started my depression. Long before I changed drug regimens I'd been sinking to the belief that life didn't matter anymore. I felt useless, and tired, and especially lonesome. Around my children, I tried to put on a happy face. When they were gone, so was that face.
And then came Suzie Schomaker, a friend. She pulled out her guitar and taught me new songs. She reminded me that intimacy requires trust, not hiding; that laughter really is the best medicine; and that accepting love may be harder for some of us than giving it. She talked and listened and hugged her way around the walls I'd built up. And in the process she joined the ranks of caregivers sighted here.
Pure caregiving requires
us to give up the silly notion that we are independent or self- sufficient.
Of course we are not. None of us. Ever. We are irrevocably dependent on
others. We embrace each other in care, because we know that alone, we cannot
survive. The essence of caregiving is love.
- Mary Fisher
Yom Kippur, 1997
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