Reading Bad Animals: a Father’s Accidental Education in Autism by Joel Yanofsky. A raw account of trying to come to terms with his son’s autism, something I can understand from the inside, having a severely autistic brother. But what interests me the most is his anger with those mothers who try to find a silver lining. In particular, he is enraged by Welcome to Holland by Emily Perl Kingsley.
Of course, it doesn’t spill the blood and guts of daily living with despair. She has to find a way to explain her life to herself that she can live with. I know – it’s what I do with pain. So perhaps this blog is equally infuriating to other chronic pain sufferers. If so, I am sorry because the last thing I want is to add to their burden.
But I do understand where Emily is coming from. I know what it is like to find yourself living someone else’s life, that of a handicapped, invalid (have you ever thought of the meaning of that word NOT valid?), when inside I am still a supple, hopeful girl. I know that the only way to cope for me (though, of course, at times I rage) is to stay in a sunlit room, to shut the pain gates with as much joy as I can muster. I remember lying weeping in a San Francisco hotel room, my longed for holiday slipping away, in too much pain to walk or sit. Praying, “Please God help me; I cannot do this.” And somewhere dredging from my bones the will to look for something, anything of beauty – and outside our drab motel room was a dusty window box of geraniums, a splash of courage against urban gray.
“Look for the beauty,” I murmured over again – and a few hours later I could laugh and for a few minutes forget the pain. Because that is what it is like, living with despair. The life raft is hope – and every day you grasp it, knowing the only way on is to make a narrative of your life to yourself that is not pathetic. So, yes, I know Holland and it has brought strange blessings. I do the same as Emily because if I don’t I drown.