My parents lived with us for two of the last three months. My mother cared for me, Bill, and the kids seamlessly. I marveled at her ability to run our household despite her 70 years and arthritic hands and knees. Even at my best, I never kept the household so organized. She dressed my wounds and wiped my tears; she helped me shower and dress. Once again I was her helpless child, and she bore the burden without complaint or tears. Only once did I hear her sobbing behind the closed door of our guest room.
My mother craves an explanation for all this and, in her devoutly religious mind, God is the only explanation. There must be a reason and, conversely, there must be a way out. “You just haven’t surrendered completely to him,” she said to me one morning shortly before they left. If I surrendered any more I might as well lie down in the middle of a busy highway. “This isn’t my failure, Mom,” I answer, trying so hard not to offend her. I know she needs to believe that God is going to take this all away. Without that belief, her tears would start and never cease. She cannot bear the idea that she might bury her child. So rather than grow angry with her I try to find sympathy for this poor, desperate woman. And I let her believe what she needs to believe.
Through most of their stay my father busied himself with the dogs, the yard, or my book collection. I was struck repeatedly by his lack of instinct. I would launch into a coughing fit and he would sit there paralyzed while my mother met my needs. In some ways he was as helpless as she was helpful. I would observe all this and think, “That Y chromosome is missing some really valuable information.”
It wouldn’t be exactly correct to say that my father is a man of few words. When he is in a talking mood, it is difficult to shut him up. But, more often than not, he prefers to sit in silence pouring over the pages of a book. He is a voracious reader, and my most enduring image of him is seated on my parents’ living room sofa in the dim light of an incredibly odd lamp whose base looks like a handsome Don Quixote. My dad reads everything: books, magazines, newspapers, cereal boxes, instruction manuals. He even reads cookbooks, and he can barely boil water. Despite his devotion to the printed word, he seems to lack any faculty for languages, including English. He fumbles and trips over words that seem to lack any fluidity.
One of my dad’s assigned tasks was to accompany me to the kids’ activities. One night, less than a week after my first tube was placed, I insisted on taking Aidan to gymnastics. My dad and I sat and watched while I coughed almost continuously for an hour. At one point I placed my hand over his and he cupped it gently. We sat together without saying a word. My hand felt warm and cherished against the rough skin of his palms. I didn’t need his words to feel his comfort and support; I just needed his presence.
The week before him and my mother left, he came and sat on my bed. I was feeling low. I had little appetite and the tube was making my nights fitful. And this man of few words sat with me, “No one can tell you they know how you feel because they don’t. I know you’re frustrated and sad. I can understand that, but you have to keep going. It’s like you said ‘It’s a marathon not a sprint.’” “Besides,” he continued, “You’re a tough cookie.”
A smile eased across my face. When I was a toddler just learning to talk, my parents would ask me, “Michelle, what do you want to be when you grow up?” And I would answer, “A cookie!” When I approached my adult years and began to suffer life’s trials – the end of my first real relationship, my house fire, my diagnosis with scleroderma – I would always assuage my father’s worries with a well-timed, “Don’t worry, Dad. I’m a tough cookie.” And I am, or at least, I was, but I now fear that I am beginning to crumble.
We sat together on my bed that morning and I enjoyed his easy company. He didn’t tell me what to do or feel. He didn’t give me a long-winded pep talk. He listened and echoed my feelings and fears. He was present with me and let me be where I was: sad, discouraged, and bordering on hopeless. And in some strange way, his accepting presence made it easier to chip away at all the negative emotions and find some small ray of happiness and enough momentum to keep going.
When I was a child my father would always paraphrase O’Henry, “Life is made up of laughter, tears, and sniffles, with sniffles predominating.” This always seemed to pessimistic but in keeping with my father’s curmudgeonly streak. These days I find wisdom in O’Henry’s observation. My emotions lurk just below the surface and it takes very little to cause my eyes to well. Last week I was driving Amelia to violin and the Kinks’ “Come Dancing” came on the radio. I always loved that song because the younger brother’s narration reminded me of my own childhood watching my older brothers head out to high school dances while I was just a grade-schooler. They seemed so grown-up and I relished the idea that one day I, too, would go to high school dances. As I listened to the song I thought back to all the happy moments I have spent dancing. I never had to be coerced to dance; I was usually the first and last on the dance floor. (Although I do NOT like the electric slide or the Macarena, I still do them.) When my brother got married in January, I still danced but only with great effort. It was hard to breathe and I had to be very careful not to overdue it. It’s the first time that my lungs kept me from dancing with reckless abandon. As I listened to the Kinks sing about whether the grown up sister would still come dancing I started to cry. What if soon I cannot dance at all?
Of course, I am probably the only person on earth to have cried to “Come Dancing.” If I cry the next time I hear “Lola,” I am going to really start to worry.
I wonder now if the “sniffles predominating” becomes true as one ages. When you turn over an hourglass, the initial grains move slowly, but as the volume at the top decreases they flow faster and faster into the bottom chamber. That’s how my losses feel now. I can no longer sing and often cannot speak. I spend hours of everyday in complete silence. I can no longer hike or ride my bike and even walking the dogs has become a challenge. The losses keep coming and I cannot seem to stop them. I keep trying to hold onto things but they keep slipping through my hands. I feel like I am aging in fast forward, living my life on the living room sofa watching movies and reading books. I feel a sense of accomplishment if I manage to run an errand or meet a friend for lunch. I’m starting to feel like Peggy Lee, “Is that all there is?”
And then I pick up the New York Times and I see the picture of a Burmese women amid the wreckage of her home and community. She has no food, no shelter, no clean water, and little to offer her hope. “Shut up, Michelle,” I want to say to myself, “Yes, you are suffering but you have everything you need to endure it.” I realize there is not much point in self-flagellation but I don’t want to lose sight of everything I have to be grateful for. And, yet, this is still not the life that I want. I takes a lot of effort to focus on the simple joyful moments that still happen every day. I try to be satisfied with my blessings: Aidan’s wet kiss as he parts for the bus, Amelia’s private notes tucked under my pillow, Bill’s utter and endless devotion. At times these things seem like enough to keep me going. But, honestly, there are times when they are not. There are times when I just want to lie down and die. I am so tired.
In any given day this war between these two alternatives, fighting for my life and accepting death, occurs almost hourly. The former is the victor to date. Last night Amelia asked me to talk to her about her changing body. We had a great conversation about what will happen to her in the coming years, how to prepare, and how to deal with all the peer issues that surround puberty. During that conversation I was so glad that I keep choosing to fight because I was there to mother her when she needed me. I guess that has to be enough for now. But I want more than this, and I feel horribly guilty that being the mother of my children often does not feel like enough to continue suffering and fighting. Isn’t a mother supposed to be willing to do anything for her kids? If that is true, what kind of mother does that make me?
The reality is that every mother is, first and foremost, a human being. That’s all I am and all I can expect myself to be. I just hope it is enough. So I sniffle my way though my days and try to relish every moment of joy that presents itself in hopes that I can continue to be part of my children’s life for at least a while longer. Maybe when tears predominate I will know that it is time to accept death and trust that Bill and the kids will have gotten what they need from me. Maybe then I can go with a clear conscience, knowing that I did everything that I could do.