My wife, Ann-Marie, and I were interviewed the other day for a new web site that will focus on helping people deal with the tragedies most of us are beset with at some point in life. I did my bit and then retired to another room and listened in on head phones while she was interviewed. Though we’ve lived with my paralysis for twenty years, she said things about being the person in her shoes that I’d never heard before. Her role in this situation is usually called ‘the caregiver,” though both she and I think that word trivializes the significance and complexity of the experience. It’s not all about dressing wounds or driving to the doctor’s, though that’s part of it. In Ann’s case, and no doubt many other significant others, it was a matter of going through her own traumatic crisis and coming out whole again.
These kinds of side by side emotional ordeals happen with many types of traumatic situations, not just paralysis. Think of the movie, “Manchester By The Sea.” In the face of the unspeakable tragedy of her husband accidentally setting the house on fire and killing their children, the Michelle Williams character ran away. This brought even more unbearable guilt and isolation to the Casey Affleck character -- his own wife couldn’t stand to look him in the face. Only when she finally forgave him late in the movie did the audience feel some relief, but ironically, not the husband. He speaks the three words that define the film for me: “There’s nothing there.”
In the wake of my paralysis, Ann felt a profound loneliness, but I was so focused on my own shattered self, I hardly noticed. Trauma like this can be the most self-centered life-event possible. You want to be alone, cut off, trying to figure out how to react. In “Manchester By The Sea,” the wife may have left her husband in part because, in his bottomless remorse, he did nothing to help her with her own remorse. No care was given back.
One thing I had never heard from Ann was how paralyzed she herself felt early on, and not just emotionally paralyzed. She said that she had internalized my condition to the extent that she stopped doing things that a non-paralyzed person would do. At one point a friend invited her to the beach and her response was, “I can’t do that. I can’t walk on sand!” In such a close identification with my injury, she felt as helpless as I did, but she wasn’t surrounded by people who could help. She herself had to be the Helper-In-Chief, not only worrying about me but our two children, her aging mother who lived with us, and among other things, the mortgage.
In her loneliness, she got very angry about the situation and pointed the finger at me. I was the one who insisted on buying the big house we couldn’t afford. I was the one who said, year after year of a seesaw career, that everything would be fine. And I was the one who somehow brought on this paralysis by ignoring the endless stress I was under or some other emotional trigger. In that frame of mind, she would have had every reason to leave. But she didn’t.
Another thing she said struck me as great advice to other spouses or loved ones in the same position: protect yourself. Don’t get consumed by other people’s needs. Ask for help. Find someone else to take your kid to trophy day at soccer. Find time to be by yourself and free of all outside demands. Going it alone sounds like the gutsy thing to do but gutsy doesn’t always mean smart.
Ann-Marie’s response to this traumatic event framed my response and my response framed hers and both rippled outward to our family. For almost two years, her ire up against my isolation kept us emotionally distant. But, somehow, we both readjusted to the new reality, much like ecologies in the natural world adapt in the face of outside forces. Forest fires devastate old growth trees, allowing new growth trees the room to flourish.
Because of our long history, and the life we had created together, neither Ann nor I ever reached the point where one or both of us said, “There’s nothing there.” That’s what saved us. There was always something there.