Coming Home
Coming home was a moment of both joy and caution. For the first time in almost two months, Rita and I would be together again under the same roof. We could hug and kiss and talk endlessly and effortlessly once more. But at the same time we also had a universe of adjustments to make, so much to learn. There was love, but also changes and risks in abundance.
On October 10 I came home; I had been in institutions for a terribly long time, since August 18. If the latter is my “bad” anniversary date, the one I came down with TM, this one is my “good”, my day of liberation. That is a very, very long time to be in places like that, without any personal identity. I had a long adjustment period before me, to restore my essential self.
Rita was overjoyed. She remembered how she “was delighted, I was really excited. But that was the goal, to get you home.” My emotions, however, were more complicated.
As the delivery service wheeled me up the ramp to our home, Rita stood there, smiling, waiting for me. I saw her and I cried. That was it; I just sat there and sobbed, shuddering and weeping. It had been so long since I had been home; I was a totally different person returning to an unknown world. Now I was with Rita again. Yet all I could do was let the tears flow.
Not just once either; this went on for days, weeks, months, even. Everything, any little detail, set me off. If it reminded me of the old world, of what I had lost, I cried. When some incident highlighted my new existence, what I was adjusting to, I cried. It didn’t really matter how big a deal the item was, I just cried. That first weekend, for example, as a treat, Rita got fresh bagels on Sunday with cream cheese and smoked salmon; in response, my tear ducts opened. This was real food, food I couldn’t dream I would ever taste again. I cried as I gobbled up the morsels and the memories.
After that every event, big or minor, good or bad, that reminded of what I missed, of what my old life consisted of, or what I was in this new world, and the floodgates opened. I read the NY Times and the LA Times every morning; in the institutions there were no newspapers delivered. Getting caught up was a Godsend; the first time I saw my beloved edition, I cried.
Thanksgiving and Christmas, my first holidays in a wheelchair, I cried. When I couldn’t shop for a present for Rita (the web turned out to be a wonderful thing for someone without mobility), I cried. Just before New Year’s, I cried. Rita later remarked, “You were a mess.”
I’m still not sure why I was like that. Both at the time, and in my memory, these were often tears of joy, especially when I came in the door and saw Rita.But everyone knows, tear-filled jags like that are a clear sign of depression. In an article in the October, 2009 issue of the Journal of Clinical Investigation, researchers at Johns Hopkins, including Douglas Kerr, the head of their unique TM center, discovered a molecule they believe is the cause of the demyelinating disease. Their study found that levels of IL-6 were substantially elevated in people afflicted with my condition. The other lead researcher, Adam Kaplin, remarked, “This is the first time a single culprit has been identified as causing a CNS (Central Nervous System) autoimmune disease.” But IL-6 has also been linked to depression and lack of concentration, the original connection that sent researchers in this direction, given how common these conditions are in TM sufferers.
Fortunately, I didn’t know anything of the sort, which was good; I was just living out my life, not wallowing in the self-knowledge that I was clinically depressed. In retrospect, the other explanation was that I was in mourning for parts of my past life, big parts. I still believe the tears were a legitimate part of the grieving process, regretting the life I once had, and that was now gone, that I had given up, so arbitrarily and unwillingly. And I had no idea, having just gotten home, what—if anything—would replace it. The fact remained that I faced, not just a single fundamental alteration or two, but an avalanche of life shaping adjustments.
Keep in mind too, that, aside from the rhapsody of being with Rita again, I was being denied one of the comforts that comes with getting back to one’s own living space. One of the sensations, at times soothing or delirious, was being in a profoundly familiar place, your home. While in many ways this was true—the place had the same layout, the kitchen was still intact—in many ways, this was new terrain. I could never get back to my beloved office—hopelessly out of reach upstairs—and had to painstakingly recreate the familiar, getting a desk, figuring out where to put the computer, the printer, the paper, pens and paper clips. Little things, yes, but moves I had ignorantly taken for granted before, and which I had to now contemplate before I could restore that ease that comes, once more, with knowing where the ballpoint is without having to think about it first and then glance around.
There was also a feeling of helplessness, of terrible dependency. Of course, in the hospital I had depended on others, but when I got home the reality of paralysis really hit home. Here I was, for the first time since myelitis hit, on my own ground. It wasn’t the big things that I couldn’t do; rather, it was the intimate, day to day movements that I had taken for granted since I was roughly one year old. Now, I couldn’t put on my underwear without help. Rita had to do that for me, and put on my socks as well. If I had to go to the bathroom in the middle of the afternoon, when she was at work, to take a dump, would I be able to get my pants back up and tuck in my shirt? There were a lot of realizations, a lot of questions like those, and the loss of ability, of control over my life was devastating at first. In time I adjusted, but my initial response: I cried, of course.
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.”
I agree.
This is the fourth post in the series “Bronx Accent” written by Bob Slayton
Robert A. Slayton grew up in the Bronx and is now a professor of history at Chapman University and the author of seven books, including Empire Statesman: The Rise and Redemption of Al Smith. In 2008 he came down with transverse myelitis and returned to an active teaching and writing career. Slayton has been married to his wife, Rita, for 32 years. These pieces are excerpts from a memoir of the disability experience he is working on.
