On Monday night I was sitting on the floor cleaning out one of the bathroom cabinets and mumbling irritably to myself. I heard Bill come into the room and open the linen closet. “Bill,” I began trying desperately not to raise my voice, “Stephanie and I spent a lot of time cleaning out and organizing the closet and these cabinets and they are already a mess again. Could you please put things back neatly where they belong?” There was silence. I looked up to find not Bill but Marie staring back at me.
“I’m sorry,” she stammered looking guilty, “I should have stopped you. I don’t know why I didn’t.” I continued to grouse about Bill’s refusal to keep the house in order. That’s when Marie, to her credit, braved dangerous waters. “He can’t, Michelle. His plate is already completely full. He is bearing an enormous burden and doing it as well as he possibly can. I can’t do one more thing, no matter how small it seems to be. He is at his maximum.”
I began to cry tears of anger, guilt and frustration. I wasn’t angry with her: she was telling me the truth as gently and lovingly as possible. I was angry at this situation that I cannot rectify. I do not have enough energy to keep things organized the way I once did, but messy pantries, closets, and drawers still rattle the obsessive compulsive in me. Along with my anger I felt guilty for demanding even more from Bill, who is already drowning in turbulent waters and facing the reality that the future will lead him to a far more treacherous place before he reaches a calm shore. And, as always, I felt frustration that life had tied my hands behind my back and left me so reliant on others to accomplish the simplest of tasks.
“I’m sorry,” Marie cooed, “I shouldn’t have said anything.” I assured her that she had done nothing wrong, that I needed to hear it. In realty, Marie is the only person who could get away with saying those words to me. Within anyone else I would have become angry and defensive. “I try so hard to accept this illness – the physical and emotional suffering, the changes it has brought into my life – and I try not to complain, but all of this is incredibly difficult for me too,” I explained.
As I drifted off to sleep that night I continued to weep. The next morning, while Marie and I organized my office, I was finally able to articulate succinctly my dilemma, “I feel like this disease is demanding that I become a saint.” I feel like I must bear this cross without complaint, feel only gratitude for my blessings (which I fully recognize are many), and acknowledge the reality that my life is still better than the lives of most people on the planet. I feel like “being a good person” demands that I feel no anger, no bitterness, and no desire. “But I am not a saint, I am just a human being and I can only take so much,” I admitted.
I sat there in child’s pose with Marie rubbing my back. She felt guilty for her perceived role in my sadness, but she had merely brought existing feelings into focus; she had done me a favor. I realize now that I am desperately afraid of devolving into a nasty, bitter person as my body continues to fail. I fear that I will ultimately lose myself – my spirit – to this disease and that seems far worse to me than losing my body.