From a purely selfish perspective, my fifteen-year-old’s physical disabilities have been useful in my middle aging. I’m more grateful for my ability to scratch my ear, turn a doorknob, walk and talk than most people, as I’m deeply aware that these things aren’t always a given. If my joints are a little achier and creakier than they used to be, so what? I can still move. Caring for Felix has also kept me in good shape and made me more aware of my body than I might have been otherwise. Imagine the core muscles you develop assisting someone larger, heavier and more wobbly than you to rise from a wheelchair and make his way across some yards of sand to a pond.
I love swimming with Felix. In the water, he is light. We jump together, laughing and splashing, gulping down great draughts of pond water (him) or yelling, No! Don’t drink the pond (me)! The Felix effect is such that I even feel beautiful in a bathing suit, at least when I’m around him. I’ve written about this elsewhere. If you are in need of a beauty boost, it may be of help. But now I’m interested in how he has altered my understanding of aging–middle aging and old aging, too. I know that I will not always be able to help him swim. His bones are still growing bigger and heavier, as mine are beginning to lose their density. I know that I will mourn the day that I can no longer hold him up, but I also know that we will still be able to touch, that the energy that runs through him will continue to spark mine. We’ll just need to align ourselves in different ways.
When certain avenues shut down, others open. That is the lesson Felix teaches me again and again. It’s hardly a unique insight. Anyone who observes nature knows this. If you dam even a modest trickle of water, the water doesn’t disappear; it changes course. Instead of burbling over mossy stones, it pools on pine needles. Maybe some of it seeps underground, but it’s still water, moistening the soil, feeding the roots.
When I was first grappling with Felix’s disabilities, I felt terrible. So many of the activities that made me happy–running, dancing, drawing, reading, writing, chatting with friends–would be enormously difficult for him, if he could manage them at all. What in the world would he do? I was afraid he’d be terribly bored. But his life has been anything but boring. On the contrary, it’s been ridiculously dramatic, veering from dark periods of pain, frustration and fury to gorgeous light-filled expanses of mirth and connection. As some of Felix’s neural pathways have been blocked, others have been formed, making it possible for him to do things that others can’t. He has made a larger swath of people fall in love with him than anyone I know. His laughter would make us billionaires if you could become a billionaire from having a great laugh. His energy may manifest itself in weird ways, but it’s there, vibrant, unexpected, affectionate, at times as startling and paradoxical as a koan.
You will probably be nodding along. Yes, yes, every manifestation of life is precious, mysterious, and unique. You may even be thinking that I’m getting soppy and sentimental, which is in particularly bad taste considering my son’s unenviable condition. But the point is, the fullness of Felix’s life within his constricted body has helped me when I contemplate my own aging. People other than myself may have to wipe my butt. I’d prefer that this doesn’t come to pass, of course. I like my privacy. But if Felix can handle it, I can too. Maybe I’ll fart in their face and giggle. He does that sometimes, and it’s funny. It lightens the situation.
Memories of my grandmother’s dementia help, too. When my grandmother Nancy was in her seventies and well into her eighties, she was one of my favorite people in the world to talk with. I mourned, as did she, when she began to lose her ability to participate in conversation. One of the things that she told me before she stopped expressing herself in words was that her short term memory had pretty much dissolved. She had no idea what she did the day or even a few hours before. Her long term memory, however, had been resurrected. She could recall being a girl in Greenfield, Massachusetts, heading off to primary school, saying good-bye to her mom. She could see the dishes and crumbs on the kitchen table, the floorboards, the buttons on her mother’s sweater. She could hear her mother telling her to wear a sweater, too. She could hear herself resisting. Each word of this exchange came back, and many others like it. So much returned, nothing dramatic, just the quotidian stuff that make up a life. While the events may not have been important, the memories were treasures. Her mother had died some sixty years before. Now Nancy could see her, as clearly as if she were in the room.
It took some adjusting, but my grandmother and I learned how to be with each other without words–It’s possible that my years of nonverbal communication with Felix helped to ease this transition, I don’t know. I only know that Nancy and I no longer drank wine and discussed New Yorker articles and the comings and goings of her diverse circle of friends past and present. Instead, we made bird calls and whoop de dooo sounds. And I loved being with her just as much. Instead of marveling at her wit, I marveled at the brightness of her eyes and the way her skin glowed. She was still a marvel, perhaps even more marvelous in her oddity. I still felt transported in her presence.
When it comes to talking about aging, conversations tend to center around what we lose, not what we gain. So the prospect seems terrifying, a dwindling of life. But this is a blinkered way of approaching things. It negates the developments and discoveries that can happen up until the very end. My grandmother got her childhood back. Her glow could light up the night, had she been allowed outside. As precious as the things we clutch onto may be, there’s more precious stuff out there. And clutching leads to rigidity and muscle ache.
I’m not saying that it’s easy. I am well aware of the economic and social pressures to look young. As much as I try to shrug them off, or analyze them out of existence, I still gasped in horror when I noticed the constellation of age spots spread out over the backs of my hands. What were those? On my hands? Change is unsettling. But the unsettled settles. Now that I’ve gotten used to my age spots, I wonder what upset me so.
We are afraid of what we don’t know. Perhaps our aging angst boils down to that, the fear of the unknown. Which brings me full circle to Felix, who has let me tag along in his unchartered territories so often that the unknown seems a little more like home.