After my house burnt down in graduate school, my friend Paul gave me a rocking chair that was falling apart and badly in need of restoration. He knew I had just bought an unfinished bedroom set and enjoyed staining the furniture to my liking. I guess he figured I would enjoy a new project to keep my mind off my loss. More importantly, I needed something to sit on.
The chair sat in my living room for nearly a year. In the meantime I had met Bill and was too busy falling in love to refinish the rocking chair. Then Bill and I decided to refinish it together as our first home improvement project. The chair had an awful 70s-style, dark brown finish that definitely needed to go. Bill finished most of the stripping in the backyard of his rental house. Afterwards, we moved the chair to my apartment. One afternoon I was avoiding my dissertation and decided to finish stripping the grooved areas. I wore gloves but after working for a while the skin on my hands began to burn. I remember ripping off the gloves and washing them over and over to no avail. I walked back to the living room where the air was heavy with chemical fumes. I hadn't thought to ventilate the space much at all. At the time I remember thinking that I better give up on the project for the day.
I woke up the next morning and my hands were red and swollen. After several days the swelling persisted. Within one week I developed Raynaud's phenomenon. I didn't know it at the time, but my life had literally changed in an instant. Just when I had learned to stop worrying about making "one false move" I went and did it. Of course, I could not have known at the time that my genetic hardwiring was such that the chemical solvent was like an explosive switch for my immune system (Several docs have told me that it was merely a coincidence; I have reminded them that they still do not know what causes scleroderma and, perhaps, they should try opening their minds and then they might figure out what causes the disease). My misstep could not have been avoided, but I still have to remind myself of that from from time to time.
The rocking chair sits in our family room now. Every once in a while, when I am feeling bitter, I think about getting rid of it. But I can't let it go. It was Bill and my first project, I was sitting on the chair when he proposed to me, I rocked my children to sleep in it. It is a part of my life.
Tonight I was driving to Whole Foods at 9:30 to get some skin cream for my niece. I rolled down the windows and enjoyed the warm air rushing through the car. I was feeling grateful that I felt well enough to run to the store for my sister-in-law so that she could stay with her baby who needed her. I feel grateful for such small things these days. For some reason I thought about the chair again and I realized the real reason that I could never let it go: it was a gift. I don't mean in the sense that it was a gift from my friend. I actually mean that the process that it set in motion, the disease and my life's course, was a gift.
When I used to blow bubbles at my small children, it was such a joyful experience for them. They never fretted about how they wouldn't last (of course, the bubble bottles were always pretty big). They simply reveled in the magic of those elusive, fleeting, fragile orbs. Photos of children playing with bubbles should be in meditation instruction manuals in the chapter on being "present in the moment."
My illness made it clear to me painfully early in life that the ride was not going to last very long. And, I believe, that knowledge changed me in some very fundamental ways. And now as I face this most difficult period in my illness, I continue to feel myself shifting. I know that my life is tenuous. The past three months have been filled with physical and emotional pain, disappointment, and despair; yet, I feel utterly transformed in many positive ways. I see things I never noticed before now, like the way my sister-in-law washes her hands so thoroughly and shakes them out in the sink before drying them on a dishtowel. And then, with her newly cleaned hands, takes hold of her infant daughter. Something about that simple act seemed so powerful to me this week. I just never thought of hand washing as an act of love until that very moment. Everything seems so different now; it's as if the world just crystallized before my eyes.
As we all spin slowly on this giant orb, we delude ourselves about the nature of our existence. It is just as elusive, fleeting, and fragile as the soup bubbles that drifted across my lawn those several summers ago. Children choose to ignore the inherent "flaw" (one could argue that their elusivity etc is what makes them magical; if they were everywhere they wouldn't even notice them) of those magical spheres and simply relish the joy they bring. But we adults seem to choose a different means of coping. We pretend that this life is predictable and orderly -- easy to do in a society with so much abundance -- and we cannot bear to even recognize all the uncertainties inherent in the human condition. We save "living" for some time in the future after we finish this or that project or move from one milestone to another. We choose to ignore the fact that life is happening right now while we are busy doing something else.
I used to tell the kids, "Don't chase the bubbles. Put your finger out and just let it land on you. Then it might last longer." And maybe that's what we should all do. Just stay still for a little bit and let life settle into us, observe its iridescence, and feel its mystery. And then we may not only feel as if it lasts longer but also reaches much deeper into our souls.