BMJ Published 15 February 1997 Cite this as: BMJ 1997;314:524
On the boat trip out his little daughter came with us. She is badly handicapped due to cerebral palsy. She cannot see or talk, but apart from that has no limitations, and she was the star of the show, standing bolt upright, straight and steadfast as a tree, defying the capriciously lurching ship, her balance perfect, her smile as bright as a sun-burst.
“She enjoys the feel of the engines throbbing up through the deck, and the sun and breeze and spray on her face,” said my friend.
“How do you know?” I asked.
“I just do,” he said, “I just know it.”
Later that night, sitting by the camp fire, with the cries of the seabirds, the song of the wind, and the roar of the Atlantic beating on the cliffs all softened into music by the shelter of the ruined walls, and the storm-tossed half-moon above us, as huge and golden and spectacular as a scab of impetigo on the tip of a TV weather girl’s nose, I remembered what he had said, and our conversation, augmented by both legal and illegal euphoriants, strayed away from women and horse racing and towards that most perilous of all subjects—the truth.
I asked him where he found the strength to bear this cross; to see this beautiful child, his child, so curtailed and restricted. I was consciously revealing my own inner demons here; it is something I have always been uncomfortable with. When faced with a handicapped child I feel inadequate, helpless, and I move on as soon as I can to something more concrete that I can actually do something about.
“Too busy,” I tell myself, “So much to do; so little time.” But I do not leave the guilt behind so easily; I carry it with me. So how could he bear such a thing, day after day, year after year, with no chance of ever seeing any improvement in her condition?
“She gives me this great gift,” he answered; was that a tear glinting in the ember light? “Every day I pick her up, I hug her, I tickle her, and I hear her laughter, like the peal of bells on a frosty morning; and day after day, year after year, I will do these things; for this is the gift she gives me, beyond any price, worth any burden.
“Without guile, without reserve, she allows herself to be loved.”
Footnote; dedicated to Michael, my late, great friend.