In the northern hemisphere, we’ve passed the sun’s zenith and slowly slide into the dark. In the southern, light returns. In the past year (15 months since the “Pulmonary Fibrosis” diagnosis), I’ve learned to reach out to everybody I ever loved in my life. I imagine us joining arms in a dancing circle for mutual healing of our damaged spirits and bodies and for Mother Earth Herself. If that sounds too “mystic woo woo” for some, it’s who I am.
Fifteen months ago I was paralyzed with panic. I didn’t know how to ask for help, share my pain, or trust anyone to listen or understand. The wordy one here was struck dumb. I didn’t want to lay my burden too heavily on my nearest dearest Doris or on Lisa who could only worry from afar. So I chose a local friend. For weeks and months I dumped my endless loop of fury and terror so heavily on her that she finally crumbled and burned-out. It was too much. She listened and advised for months. Then I rejected her latest “Just do what X did to recover from her X (not my malady), and you’ll be fine.” She cut me off with what felt like such a brutal betrayal of trust that it left red welts on my heart. In writing this, I’m not revealing her identity. I’m grateful she listened as long as she did. From that hard lesson, I learned to reach out.
By then (July) many comrades had circled me with love and caring. My invented twin Nancy, born three days before me, burst into tears. Shortly after our brilliant 70th birthday party in Corrales, she was stricken with a life-threatening malady. The twin bond we’ve invented feels real. My circle of women nearby rallied around me. My memoir writers at Meadowlark Senior Center buzzed with caring curiosity every week. My psychic tarot workshop women read my cards and offered consoling predictions and advice. My doctors congratulated me on my good attitude. The staff at pulmonary rehab, especially Nurse Mary, cheered me on twice a week through exercises, Mary always telling me to slow down. Friends fed us many delicious dinners.
My fury was directed at Intel. The Intel plant half a mile above our house spews lethal gas and fine particle silica 24/7. For three years, I’d been sucking it into my fragile lungs every time I took my daily “healthy” walks up Morning Sun Trail. When we bought our house in April 2007, our realtor assured us that silicon chip-making is a “clean” industry. That’s Intel’s PR. Clean for the chips maybe but not for breathers living downwind—horses, dogs, cats, llamas, coyotes, humans. Before diagnosis, I might have been skeptical. I’d heard rumors but probably said that a little pollution couldn’t topple me. I’m healthy. I’ve been surviving on a polluted planet for 70 years.
After diagnosis, I became an instant activist. I learned that Corrales has ten times more PF cases than the national average. I read Boiling Frogs: Intel versus the Village and became friends with the author Barbara Rockwell. See http://boilingfrogs-intelvsthevillage.com/. I joined activist comrade Corrales Comment Editor Jeff Radford. See http://corralescomment.com/ and click on Intel series for Jeff’s articles on our on-going struggle against the corporate monster that crushes anything we do.
The saving grace is my allergist whose first appointment comes up end of April. He takes a special interest in my case and spends two hours with me on my first visit, asks everything about my medical history, assures me he’ll get me in to see his pulmonologist friend. He’ll refer me to National Jewish Health for full evaluation. He does it all. As soon as I’m scheduled for NJH last week of July, I feel the first glimmer of hope that I’ll find something out.
Meanwhile, I discover that my secondary insurance from Wisconsin doesn’t work in NM even though it has been up until now. I must switch to a new plan with a waiting period that won’t kick in until June 1. I can’t make appointments for a new primary doc or pulmonologist without full insurance, but I do. Every doc is scheduled two months out anyway.
April through July I’m in a fog. Am I dying? We all are. How soon? None of us know. The Grim Reaper feels a bit too close for comfort. He looks much like the black-robed character from Bergman’s The Seventh Seal. I push him away. Doris and I watch movies and avoid talking about what sweeps over both of us like a chill wind every conscious moment.
A friend and companion for dinner and whatever play I’m reviewing every two or three weeks last summer voices what I can’t say out loud: “This is just awful! Your whole life has changed completly. You’ve lost everything—your independence, your dreams, your future, your self-image. Here you are tethered to an oxygen tank. You can’t do any of the things you planned to do. This is just awful!” She gives me room to mourn my losses and move on.
I’m befuddled by friends who say, “Oh you’ll be fine. You look great. That’s what matters most. Just stay positive and get well soon!” These consolations leave me feeling guilty for not staying positive and getting well soon. My “Amen, Sister!” smile goes to those who blurt out “Oh this is so unfair! You ate right. You exercised. Now this. Life is so unfair!” Somewhere between awful and unfair I can rest comfortably.
It occurs to me that “awful and unfair” are always better for someone in pain than “cheer up,” which only consoles the consoler. Imagine a toddler who skins her knee. Mom 1 says, “Stop that crying. It’s just a scratch. Watch your step. You weren’t paying attention, were you? Now put on a big smile for Mommy.” (Kid wails louder.) Mom 2 says, “Let me see that terrible booboo. It must hurt an awful lot. Where’s that bad rock? Bad rock!” (Kid bucks up.)
Imagine you’re the dean and Prof No Grant walks into your office. Dean 1 says, “Oh, No Grant. Didn’t get the grant, did you? Project outline was a bit thin. Cheer up. You can do it without money. Just learn how to manage your time better.” (No Grant leaves muttering, “I hate the dean.”) Dean 2 sees No Grant and comes around the desk with a long grim face. “Oh, No Grant, I’m so sorry. What idiots do they let serve on grant committees these days? Your project is brilliant. It’s so unfair.” You shake your head in the most mournful way. (No Grant leaves thinking, “The dean gets it.”) So much for my sagacity! It’s not just showbiz; it’s compassion. Put yourself in the soul of the sufferer and pour real balm on the pain.
What consoled me in my darkest days were friends telling me about their lives. Sandra on the from phone from Australia. We’re always laughing remembering some blunder in our many travels around the globe. Sandra notifies her global network about me and, and I’m deluged with good cheer from time zones I’ve never seen.
Reviewing plays for http://www.talkinbroadway.com/ last summer also kept my creativity alive and kept me distracted, if only for the length of the performance.
That’s where I was a year ago. I’m making peace with my slower body. I’ve lost twenty pounds in three years. Struggling to breathe burns more calories than you’d think. My hair has gone curly. My lungs and heart have suffered damage, but my spirit has expanded thanks to my loving circle of friends. (These words rattling around my head couldn’t wait till next weekend, but I’ll wait till then for another entry and get back to writing my Joplin memoir, 1976-79.)
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