In essence, I didn’t know who I was at that point, having just entered this new existence. Keep in mind that a lot of the time I sat there, my arm on my chest at a 45 degree angle, my hand curled into a claw. I didn’t know what I could do; I had no idea how much I would recover, and what new assets—new skills, new hobbies, new friends, new ideals—I would gain. Or how or to what extent I would adjust. Alice Trillin once remarked that the worst thing a serious disease can do “is rob you of your identity.” She was dead on right. And I was just starting to come to grips with how much I had lost.
Rita’s response to all this: each and every time I cried—there were endless episodes– she would cradle my head and hold me. Remembering her love, her smile, makes the tears want to drop again, as I write this. She never wavered.
The immortal moment came a couple of days after I got home. Filled with fear, with the possibility of the most horrid imaginable scenario playing out, I posed the question which, for me, filled the room.
As Rita sat on a stool in front of my newly purchased hospital bed, putting on my socks, I gulped and asked her. “This is not what we had figured on for our marriage. For our future together. How do you feel about us?” I was petrified, screaming inside, but had to do this; our marriage had been built on openness and truth. If she didn’t want to stay, I couldn’t, would not keep her, no matter the loss to me.
Rita turned her head to the side and thought for all of three breathless seconds. Finally, she looked directly at me, speaking words simple yet breathtaking, “I’m married to the man who I wanted to be married to. Who just happens to be in a wheelchair.”
The best anecdote that captures even a fraction of how I still feel about her reply came five years later. I was talking to an older gentleman I had met, relating this story. When I got to that line he was stunned. He turned his gray beard and looked out into space, then solemnly intoned, “That’s a great woman.”
Transverse Myelitis doesn’t change people. And more than anything, it doesn’t change love.
This is part of my story.