Posts Tagged: Sjogren’s
On March 26, 2015 by Katy
One March weekend, over twenty years ago, I bombed my apartment with pesticides and went out for the night. The weather had turned cold. I could see my breath when I opened the windows and hear the reassuring hiss of chemicals cleaning the air.A car outside spun on ice. I was tired and impatient. Tired of slapping at my ankles and impatient because impatience is my nature. I blotted my lipstick and headed out.
Driving home after midnight was slick. The road from Brookline to Cambridge had become black ice and I was slightly exhilarated by the challenge. Sunday passed, forgettable. Monday, however, a surge of fire burned over my legs and arms as though I had spent the night sleeping under a radioactive sun. I turned on the air conditioning as I drove to work. By midday I had hives and my mouth burned continuously inside. When I asked my colleague, Victoria, to look at my skin, she sent me immediately to the ER in the hospital where we worked.
My immune system had gone to war with the world. Overnight I became a foreigner. I was suddenly allergic to familiar things, places and, depending on what they wore, people. With glacial slowness and hundreds of trials and mistakes, I would have to climb out of the huge pit I had dropped in overnight.
I received the diagnosis of MCS. Family and doctors both helped and hindered. My illness fell into the group that border between the known and the unknown, the tragic and the merely hysterical. Chronic Fatigue, Lyme disease, Fibromyalgia, Chronic Pain Syndrome, Sjogren’s Syndrome.
This physical change divided my life. Looking back from childbirth, divorce and the death of both parents, this time was the most terrifying I have known. Those other, developmental changes fell into the realm of what normal life brings. But my own self was neither familiar nor trustworthy. I was no longer a continuous line of associations. My past filled with scent and touch was severed.
Ironically, I had sworn never to become this ill. My mother had spent a good portion of my life with fibromyalgia, bed-ridden and fragile. Consequently, I exercised a lot, took my share of risks, and inhaled deeply from life. I wanted to feel intensely alive.
Genetics and stupidity trumped it all. In a few destabilizing years, I moved three times. I gave away my clothes and furniture. Every few months I stopped trying to live with my illness and simply rebelled against it. During those times I infused my blood with Vitamin C, rotated my diet, took hundreds of supplements, and drove to neighboring states so doctors could pass magnets over my body.
When I emerged from the worst of this crisis, I became uncertain if I should have children. I told this revelation to my mother and she said she understood.
Fast forward. My daughter is 12. I am divorced and she is ebullient, popular, and practical. One week recently, also in March, I fell through time. In a few days I was deep into a surround of pain I had forgotten. Pulling down her shade made me wince. My deepest fear was that my daughter would see me as disabled or incompetent, even insane because my illness can’t be seen. I discounted twelve years of parenting in a day.
Mold was the problem. This time I could smell it in the house. My eyes began to tear and twitch. My bones ached. My daughter herself said, “I smell something awful.” My denial dissolved. She has allergies and asthma and zero anxiety about either. She carries an Epi-Pen and takes inhaled steroids every day. She is sturdy and secure as they come. Touch wood.
I scrubbed the washer and sink like a surgeon. But the smell came back, as though the earth itself were decaying under our house. One night I sat in my office and realized I was afraid to go home. The last days I felt myself become granular—as though I had sat in the sun all day and grit under my skin. My blood felt fiery.
But my daughter was coming home for the weekend the next afternoon. I was stumped. Was it time to pretend or was it time to escape? Would this pass with distraction or worsen? What was sound and what was wise? Not the sort of answer found in a parenting book.
The only wisdom I could find was this: Where could I function best? I checked
into a hotel and felt no better. We stayed for three days. Penelope knew exactly why we were at a hotel. She didn’t buy my tale of a mini-vacation for a minute. We talked truth. How long would we stay? Would we move back home? If not, could I keep the house for her to visit? Children need life to make sense and my job was to create reason. I answered carefully. Parenting had taught me that promise breed mistrust.
We went to see Cinderella. I watched her watch the movie; I could not rest my elbow in the seat between us. The last night in the hotel she put her wet head on my shoulder, sleek as a seal in the king size bed. We listened in darkness to My Family And Other Animals. From the hollow of our white room we travelled to Corfu and saw a boy swimming in a phosphorescent sea. I listened to the story with all my concentration, the solid British voice reading aloud.
I lectured her a bit sternly: “We don’t do helpless. We have what is most important here, love. We can get our things. I can go to work and you can get to school, to your friends and to dance.” Solemnly she nodded. No comment.
The next morning she smiled. “I don’t want to leave. What time is breakfast?” Unlike her I dreaded what was to come, unwinding my muscles to get up, solving the murky puzzle of mold or moving. But there was a victory that weekend. I had feared I would become a mother who burdened my child but I kept most of my terror and doubt inside.
I hope to take Penelope to Greece. We can go to Corfu, see the lemon- and pink-colored villas, and find dolphins surfacing, throwing off light from the phosphorescent sea.