Sunday, June 26, 2011
Solstice Blessings!
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.)
Saturday, June 25, 2011
Denver Trip & Health Report
June 2011 Solstice Letter Part A
Denver trip
I leave my ocean retreat at noon Monday, June 20. Lisa drives me to the Orlando airport. They allow her to drive my wheelchair to the gate. On my four-hour flight, I need to change the battery on my oxygen concentrator only once—a maneuver that requires dragging the machine from under the seat to my lap and pulling a 6-lb brick out and sliding another in. Slick job for a weight-lifting contortionist!
When our flight arrives, I’m the last kid off the bus because we have to screw my machine back on its cart, plop me in a wheelchair and pile 40 lbs. of machine and attachments and my shoulder bag on top of me for wheeling down the ramp. At the gate, I wait for a cart, which takes forever--or maybe 20 minutes. The cart cruises gates until it’s full, slowly shoving its way through oblivious walkers (no beeps) to a waiting station where each of us with various mobility needs is loaded on wheelchairs (40 lbs on lap) and wheeled to a freight elevator where my driver crashes the protruding handle of my cart into the door. Doris, who’s been waiting in cell phone parking more than an hour, is anxious. Have we lost cell phone connection?
Finally re-united, we’re giddy with joy to touch each other at last, sniff our familiar scents, and take up our familiar witty banter. We head for dinner at the same franchise we’d found six weeks ago—Macaroni Grill in Aurora. Waiter David greets us as regulars. Doris has already checked in at Best Western, where we’re definitely frequent flyers—our third stay since the week there in Aug 2010 when I’d had the lung biopsy.
On Tuesday we spend 10 to 2:30 at NJH. (Health Report below.)
After NJH, we return to our motel. Doris generously allows a bit of our precious short time together for my visit with an old friend now living in Boulder. Gloria, whose play “The Postcard” is in my Amazon All Stars collection, comes to our room. We last saw her in 1994. She stayed with us in Springfield, MO, on her cross-country drive from Woodstock, NY, to LA to try her luck as a screenwriter. There she discovered that everyone has a screenplay. After that adventure, she found a real (paying!) job based in Boulder. I’m happy to hear of her recent successes, 15-year relationship, and new house. She leaves me a copy of her brilliant new play.
Now Doris and I face a crisis. I can’t fly tomorrow without a cart for my oxygenator, and she needs tools to repair the broken one. We call 800 numbers and local ones and find a medical supply just 15-20 minutes away where we can buy a new one. $70 later we’re off and rolling with more info from our new friend Nick about oxygen equipment than I’d learned from my ABQ oxygen supplier or my respiratory therapists at pulmonary rehab. He sells me a sturdier, longer lasting oxygenator ($700) for daily use here in the condo. I can save the fragile Sequal Eclipse on wheels ($3000) with a shorter lifespan for plane trips only. The new machine arrives via UPS next week.
Fortunately Doris and I have leftovers from last night. Neither of us has energy to forage for dinner. We can relax now and enjoy our last night together for a month. Being apart like this seems unbearable until Doris reminds me of my four months in Scotland at the end of 2007. But then I was ending my 40 or so years of professorial vicissitudes and heading for blissful leisure in the land of enchantment in the casa of our dreams. Now we’re headed we don’t know where. We’re being ground in some character-testing crucible we didn’t choose.
Making it through the Denver airport the next morning is so grueling I almost can’t bear re-living it in words. Parking illegally, Doris finds someone from Frontier to wheel a chair to her car to take me to check-in while she parks. Unlike Orlando, Denver won’t allow her to wheel me to the gate. I must go through the whole chair-cart-chair routine in reverse. Doris calls 20 minutes later frantic. “I can’t find a parking place. I’d have to take a shuttle to a remote lot. We’re out of time.” We stoics sob shamelessly—no final hugging, no warm skin grazing.
I flail my arms to get a Frontier person’s attention to find a wheelchair for the first leg of my trek through security. I must disconnect from oxygen to walk through the screener. The belt with my machine on it halts while screeners slowly scan other bags. My oxygen is dropping and my heart rate accelerating dangerously. Finally I’m reconnected and re-loaded on a chair to the next post to wait for a cart. I enjoy cart-driver Phyllis, a retired nurse. I imagine I might spend the day riding her cart because it seems inevitable I’ll miss my flight. But after cruising the entire airport picking up strays and not crashing into clueless walkers, she delivers me to my gate and a chair—last passenger on board.
My two women seat-mates are graciously accommodating and slide out to let me unscrew my machine from my new cart, stow the cart above, stow the machine under the window seat below, slide in, buckle-up, and assess the damage. New bruises are spreading on my arms, a cut bleeding, and a hematoma rising on my right shin from one of the chair-cart transfers. The kind flight attendant brings me a band-aid and ice for the shin before take-off. My seat-mate helps me change batteries in-flight. The flight goes fast. Gloria’s new play has me riveted. My seat-mates and I share travel disaster stories, which I’ll resist re-telling.
After the battles of Denver, Orlando is easy. I know the airport. Wheelchair driver Nick is adept and cheerful. I have one more need. In addition to carrying my bag of batteries and other equipment, and my shoulder bag, I’m also hauling the broken cart with wheels to make a damage claim—no time in Denver. But there’s no Frontier Customer Service at Baggage Claim. We’re sent back up to Ticketing only to discover Frontier has closed down for the day. So we take the elevator back down to claim the suitcase Doris brought me from Corrales with clothes and other things I’ve requested for Florida.
Dave rolls up just as Nick wheels me outside, and Dave’s buddy Mike rolls in behind him in my Jeep. I want to kiss its cherry-red hood. Instead I hug my efficient son-in-law and peel off eastward on the Beachline Express. I call Cheyenne and suggest she get her mom to have us all meet at Friendly’s about 6 pm.
At last I call Doris to see where she is in her 8-hour homeward trek. She’s just north of Santa Fe. She’s not admiring the Sangre de Christo Mountains as usual but horrified at the red haze from Pacheco fires still burning. “It looks like volcanic ash.” The breath-taking landscape we love has become truly breath-devouring as it flames and blows into ash. A friend responding to my current personal crisis asked if I was channeling planetary disaster through my body. Not to be grandiose, but yes it feels like my body has become a microcosm of Mother Earth.
I join Lisa, Cheyenne, and her friend Emma about 6:07 for a high-fat, high-carb feast concluding with gooey ice cream concoctions for all. I’m so happy to be back at the ocean I can hardly peel myself off the sofa. I lounge on the bed while Lisa unpacks my suitcase, marveling that Doris’s crisp ironing survived. We four play Apples to Apples till 11. My rollicking family leaves about 2 pm on Thursday. I’ve enjoyed them but happy have my solo silence again.
Health Report and life distractions
My lung disease is given various names. Initially it was called Pulmonary Fibrosis (PF) on the radiologist’s report that my then PCP read me on the phone 8:30 pm, March 23, 2010. I looked it up on the internet and read: “fatal, incurable, progressive, morbidity in 3-4 years.” My heart stopped. Dr. Fernandez at NJH prefers to call it Interstitial Lung Disease, but it seems to be the same thing, or one is an umbrella term for the other. The open lung biopsy with tissue samples ten months ago provided a more specific diagnosis of the inflammation leading to fibrosis so it can be treated by specific drugs. Hypersensitive pneumonitis responds to steroids. Thus I was put on 40 mg of prednisone for a 3-month trial (9/10-12/10). My sweet ABQ pulmonologist Ann DeHart, MD, determined from new chest X-ray and blood tests in Dec that my disease hadn’t responded enough to the drugs, so she tapered me off by 5 mg every two weeks down to 5 mg.
As I tapered off prednisone, my lungs declined Jan-April, judged by my accelerating need for more oxygen. Dutifully I dragged my gasping body through pulmonary rehab, pumping up my oxygen flow, desperate to stay strong. Now I know I should have returned to Fernandez in Jan., but I had other distractions. Joanne Passett came for three days in early Jan to research my Lesbian Nuns archives and interview me for her book on our book. She’s an ideal scholar, writer, sister for this project she chose (PhD in both history and library science, track record of successful books). All day long we read and discuss my file of letters from contributors. She tapes my memories of working on the book and the tour. Her visit energizes me into speeding ahead on my memoirs from the 80s here in FL before and after LN publication changed my life.
I was also getting ready to perform Mabel end of Jan. at San Juan College in Farmington. The night before, I bent down to pick up papers, and my lower back snapped—a spontaneous compression fracture in L-5. Prednisone accelerates osteoporosis. My bones are so thin they crumble. I performed my full show for 120 people in a packed theater and answered questions as Mabel and then myself on pain killers and oxygen—about an hour and half. Afterwards pain and breathlessness engulfed me, but during the whole flow of performance I wasn’t in this body: I was Mabel in 1935.
Now red siren pain took center stage. I assessed remedies. Kyphoplasty? I chose a cortisone shot directly into the injured site, and it worked like a miracle so that I could fly to FL mid-Feb for almost 3 weeks to see if I could breathe better at sea level. Yes! But I had to return to NM to greet old friends coming for a visit—Peg and partner from Maine and Matile from SF. Last week in March Lise came from Switzerland, and I performed Mabel for a women’s group in ABQ while she was here. Doris and I enjoyed Lise’s hilarious stories of her life in Russia and as an international diplomat. I met Lise as Sandra’s old friend when we both participated in the International Women Playwrights Conference in Manila in 2004. Lise was Swiss Ambassador to the Philippines and carried us in her chauffeur-driven limo to remote northern territories where we were greeted as visiting dignitaries from Australia and the US. Doris and I visited Lise in Switzerland in 2007, while I was on week break from teaching in the Wisconsin in Scotland program that final fall term.
From Jan to April Democratic Women and Corrales vs Intel activism was using up time and energy I probably couldn’t spare. In Feb. and March I was taking an intensive 8-week online Memoir Writing Workshop with Lisa Dale Norton and eleven excellent sister writers whom I’ve not met in person but know intimately. For that I wrote drafts of LN memoirs that have kick-started me down that important road. I wasn’t paying attention to my deteriorating lungs (and heart).
My ABQ allergist called me mid-April and insisted I return to NJH and called himself to get me in fast. In early May Fernandez said we must take aggressive action. Prednisone shouldn’t have been tapered down but ramped up. He put me on 60 mg daily and immune suppressant Azathioprine at 50 mg to increase to 100 mg in ten days. The morning Lisa and I were departing Clarksville, AR, I woke with an itchy rash that spread over my body in the next two days on the road. I coated my body with hydrocortisone cream. Finally at Lisa’s house in Orlando I read the drug warnings from the pharmacy. I was having a “Call your doctor immediately” allergic reaction to Azathioprine. Fortunately Fernandez reads his email and responded: Stop immediately. He prescribed Cellcept, which would also prepare my body not to reject transplant. We were headed to pick up that drug when I had the heart attack.
On my recent Denver visit, Fernandez said my lungs sound better than they had in May. We’re concerned that Duke Transplant Center might reject me because of the heart attack, but I’m still scheduled for evaluation there July 118-19. Fernandez ordered a chest X-ray, blood tests, and pulmonary function breathing test. When I got to the PFT lab, the tech and her supervisor determined I didn’t have the stamina for it—too risky considering my recent cardiac event. They’d just wheeled somebody out on a gurney who’d collapsed with chest pains during the test and was now speeding in an ambulance to an ER.
I’m waiting to hear results of tests from Fernandez. He and my cardiologist Kothari here in FL need to coordinate my amazing daily cocktail of drugs to be sure they’re working together and not blocking one another. Meanwhile, I’m still breathing mostly attached to my oxygen concentrator. Once I sit down and relax, I can turn it off. But moving around the condo, I need it. When Lisa returns on Tuesday, I’d like to try walking down to the beach with her carrying my oxygen tank. I don’t think I could do it today.
My diva backstage friend from International Women Playwrights who does make-up for NY fashion shows, seeing the bruises on my arms in posted pictures, gave me a hot tip on how to dissolve them faster: daub white vinegar daily. So after lunch yesterday with my old friends from Winter Park, we picked up my new first-aid remedy. After daubing my blackish, purplish, reddish blotches up and down my arms, two realities hit me: I smelled like a cucumber salad, and vinegar was triggering a coughing jag. I spread my wings to get the vinegar away from my nose and flapped them gently, the way I’d seen the seagulls gliding by my balcony do when they kick up acceleration. Think of me as a flying cucumber salad with purplish wings.
I’ll post Part B of Solstice letter on my life a year ago and my evolving consciousness next weekend. HELP! I’m searching for healing beyond aggressive Western medicine drugs: gifted, intuitive, spiritual healers—healing touch, acupuncture, hypnosis, snake oil, anything here in central FL or along Hwy AIA from the Space Coast to Melbourne, FL.
Friday, June 24, 2011
Dec 2010 Solstice & June First Goodbye NM
June 24, 2011, Note: I’m posting this letter I wrote half a year ago for those who may not have read it and for my continuity to the Solstice letter I’ll post in a couple of days. I’ve also appended my June First Goodbye NM letter to Friends, which most of you have recently read, as part of my saga.
December 2010 May whatever feast you are celebrating be merry and bright with warm fires blazing in your heart as we welcome the return of the light and do what we can for peace, justice, healing, and embracing our fragile vibrant globe. Now post-Solstice, dear friends, darkness is fading. Doris turning up our antique lamps creates little islands glowing with hope and cheer. How does this waning first decade of a new millennium find you?
2010 opened for me on a high note. We only turn 70 once. My almost twin Nancy and I celebrated with a once in a lifetime feast. Doris and Nancy's Brenda arranged our big party with catering by dear friends Anne and Kay. Lisa flew in from Orlando to help and take pictures and help. About fifty women filled our main room and spilled out to the patio to gaze at the glowing Sandias, including Nancy's senior women's basketball team and my bookish political buddies buzzing away in comfy chairs. Joy and love embraced us all. Poor May Sarton seemed so grim about aging in her journal At Seventy, but she didn't have my Doris.
Speeding ahead, I continued writing memoirs and revising my Nebraska matrilineage story based on my trip with Lisa in August 2008, teaching memoir writing at the senior center, teaching African American Women Writers for UNM at the new Westside campus in Rio Rancho, and plunging into spring performances of my "living history" Chautauqua solo show on Mabel Dodge Luhan for NM Humanities. I love arriving somewhere as Mabel instead of just a tourist in places I'd like to discover anyway—Ruidoso Library, Las Cruces Agricultural Museum, Spanish Colonial Arts Museum in Santa Fe, and closer to home for UNM Feminist Research Institute and Meadowlark Senior Center where I teach writing. Mabel even made her way on stage at Solo Fest in early July at a local theater's festival of one-person shows.
Even better, an old friend I knew from women's studies in the 80s in Florida recruited me in April to review Albuquerque theater for a website: talkinbroadway.com/regional/alb/ Take that link to the current review and previous ones. I love brilliant, prolific Albuquerque theater; and writing these reviews has drawn me into the local theater community, research, and voicing my political and aesthetic opinions to the world.
The bad news came in late April. The cough I'd had since early 2008 was getting worse. I could hardly catch my breath pushing myself onward in daily walks. Diagnoses from X-ray and CT scan: pulmonary fibrosis (never heard of it!) Since then I've been on oxygen (a real drag) and exploring a new landscape I'm dubbing "medical-world" full of doctors, tests, therapies, waiting rooms, rehab programs. I'm interviewing and befriending the inmates of this mysterious culture, learning their language and customs in hopes they won't kill me. End of August I had an open lung biopsy at U Colorado Hosp that confirmed diagnosis. Docs won't give prognosis because they know little about causes, treatments, and progress of this rare disease.
How & where did I get it? Docs call it idiopathic. My answer: toxic pollution spewing out of INTEL plant making silicon chips half a mile above our house. Corrales has ten times PF cases as national average. I've joined Corrales Residents for Clean Air and Water who've been fighting INTEL for 20 years. But I don't want tending my "fatal, incurable, progressive" malady or fighting the corporate monster with infinite legal resources and PR to suck up all my time and energy, even though needing O2 slows me down and limits travel options. Let's flow forward with creativity.
Life is uncertain, and we'll all die. Some say live every day as if it were your last. Focus on what's most important Here Now. I must clean out my archives, speed up memoir writing, disperse most of my library. We'll move to a lower altitude. Come see us while we're still here in Corrales in 2011!
Doris and I have heeded my carpe diem philosophy. In June we drove to Arkansas to join my daughter and granddaughter to celebrate the 70th birthday of my ex-husband Charles, Lisa's dad. Crazy, you say, for one who sometimes calls herself a separatist? Charles and I have never been enemies or spoken ill of the other. Cheyenne could see her grandparents happily divorced for 40 years reminiscing as friends. Charles enjoyed lecturing Doris on his rare antiques, and she enjoyed learning about them. The adventure prompted me to begin writing about my Arkansas years, and breathing was much easier at 1200 feet than 5000.
In July and August Doris and I took week-long trips to Denver--first for tests at National Jewish Health Clinic (best in US for respiratory ailments) and then for the biopsy at U of Colorado Hospital. We pretended we were on holiday--browsing bookshops and galleries, sampling microbreweries. In October we explored the ancient petro glyphs at Canyon de Chelly and the Crownpoint rug auction.
I spent all of November in Florida. Miraculously I could breathe at sea level without oxygen. Doris and I drove down and played tourist at Harry Potter World with Lisa. After Doris flew back to ABQ , I helped Lisa get ready for her photo exhibit at the Lake Eola Festival. I had an ocean front condo on Cape Canaveral for 15 days of pure bliss--writing memoirs, reading, healing, visiting old friends from my 14 years at Rollins College, and spending separate quality time with Lisa and Cheyenne. My 13-year-old granddaughter and I bonded. She's into math and science projects and writing stories. What a sparkler! What a magic liminal age! My Cape Winds Journal chronicles that 15 days. Doris flew back to Florida on Thanksgiving. We spent a delicious Margaritaville weekend in Key West before driving back along the Gulf.
It's good to be back in Corrales with friends, good to share my memoirs and those of my senior center writers; to continue reviewing plays; to accept invitations to perform Mabel in 2011 and teach more memoir writing; to join Democratic Women of Sandoval County promote progressive politics in NM ; and to embrace "medical-world" with hope and cheer, despite fog about our future.
Other sad news: We lost Tiger in October. When her health failed, she went fast. She decided that Doris's birthday dinner would be her farewell party. She played hostess, more extroverted than she'd ever been. She sat up at the table next to me as if she expected a plate of her own. Four days later she collapsed. When no treatment worked, we brought her home. Brenda took a family portrait. The house now seems so empty without her shenanigans for the past 17 years. Doris always said Tiger took after my party girl Irish side. We still feel her playful spirit.
Winter Solstice cheer and love from Rosemary and Doris, who doesn't write holiday letters.
Goodbye New Mexico (written 6/1/11 in Orlando)
I hope you are rolling into summer 2011 with good health and good spirits. I wanted to update you on my transitions. It was becoming so difficult to breathe at 5000 feet that I had to flee my beautiful home in Corrales earlier than I’d hoped. My need for more oxygen was increasing so rapidly that I could hardly move without continuous flow 24/7. My allergist said I had to leave and phoned my pulmonologist, Dr. Fernandez, at National Jewish Health in Denver to get me to see him ASAP. Denver doc phoned me to see him immediately because wants to get me on a lung transplant list, even though people over 60 are rarely considered safe risks. Since I’m healthy in every other way, Duke Medical is reviewing my case. They must judge that I can’t survive with these lungs and can withstand the transplant. If my insurance and medical records pass, they’ll schedule a week-long evaluation. I’m optimistic.
These past few months I’ve been writing my memoirs, dispersing my library, and finding a home for my feminist theater and LN archives. Even in my flurry, I published two more reviews for Talkin’Broadway: http://www.talkinbroadway.com. If you’d like to read my reviews, click on the site and put my name in the search box. Memoirs will be in progress for a while. I thought sorting my library and archives would take 6 months, but I did it in about 10 days: 3000+ books to UNM English and women’s studies, 1500 to Corrales Library (most of my modern drama collection), 500-1000 to friends and other places. I’ve kept 2500+ for myself to enjoy for the next decade. My feminist theater archives have been shipped to Smith College. I’m delivering 3 cartons (my Australian lit collection) to Rollins College this week. Later I’ll organize LN papers, but I need them for the memoir I’m writing this summer. Doris has packed dozens of cartons of books. She’ll be working on our house this summer.
Alas I had no time to say goodbye to most of my dear NM friends (thus this letter). Doris and I are grateful that my daughter Lisa flew to ABQ May 22 to drive with me to Orlando so that Doris didn’t have to stop work. Tornadoes sweeping across the path we were to travel delayed our departure until May 25. We spent a day in Clarksville, AR, with Lisa’s dad and 95 year old granny. We arrived here May 28.
Lisa took photos of the tornado devastation in our path that we didn’t have to detour to see all across Oklahoma, Arkansas, and Alabama. I’ll tell you when she posts them on her site at lisadevore.com. While I’m fleeing for my life, I’m mourning of all whose lives were swept away in an instant. We were tempted to take an extra day to detour from Clarksville to Joplin where we lived 1976-1979. Is our old house near downtown still standing? Lisa as photojournalist hoped to document that disaster, but then we thought better of intruding. We are treasuring everything precious in our lives.
Failing lungs aren’t going to stop my plans to take my 14 year old granddaughter Cheyenne to NYC (her first trip!). We’ll fly to LGA on June 9 and take Amtrak back to Winter Park, FL, June13-14. We hope to do the tourist hot spots and lots of theater with Cheyenne pushing me and oxygen tank in a wheelchair when my lungs aren’t strong enough for tourist walking. No barriers for this adventurous duo!
Back in FL, I’ll have a condo on Indian Harbour Beach overlooking the ocean June 15-July 15 where I can breathe, heal, write, read, meditate, wait for whatever happens next. I’m resisting grieving all I left behind. Doris and I don’t know where we’ll settle if/after a transplant. Right now we are living day to day in the whirlwind on opposite sides of the country. (cell phone: 505 463 3843).
Monday, June 20, 2011
June 19-20
Sunday, June 19, 2011
Father’s Day at the DeVore home, but here at the ocean I hear only the tranquil swish of waves and the caw caw of seagulls flying right past my sixth floor balcony. On my fourth morning waking to dawn brightening over the grey water, I’m feeling rested after five hours sleep and ready to get back to my Joplin memoir on hold for past six weeks of sorting, packing, moving, travel, and all that happened here. I read the draft in progress yesterday with fresh insight ready to expand and revise. In those years (summers 1976 to 1979) I strengthened identities and convictions as lesbian and feminist, as scholar and teacher, and as mother bonding with my 9-12 year old daughter. Getting fired from my first tenure-track job for writing a lesbian story radicalized my activism.
Cheyenne and I arrived here Wed. My amazing granddaughter unpacked my entire Jeep in three loads and hooked up my computer, printer, and portable oxygen concentrator while I slowly moved in to this best-ever condo with two bedrooms, two baths, ample kitchen, spacious living-dining area that opens on to a wide balcony spanning both main room and master bedroom. After unpacking, Cheyenne and I tapped like little nerds on our matching laptops facing each other at the dining table. I’ve set up archives on my life in the bedroom. For reading I can lounge on either sofa or in the recliner by the balcony.
I’ve posted a picture of our ice cream celebration at Friendly’s that evening. We were pretty pleased with ourselves. Cheyenne slept till almost noon on Thursday when her mom arrived and we all went out to lunch at Grapevine Café attached to Green Turtle Market full of healthy gourmet treats. My stamina wasn’t up for shopping, so I rested in my Jeep while they foraged and drove a cart around Winn-Dixie for groceries. Back at the condo, I realized I was in for the next four days until tomorrow when I fly to Denver. L & C left about 7 pm Thursday, and I inhaled blissful solitude.
The euphoria I felt at Cape Winds condo in November has waned. My fragility and inability to walk on the shore just yet deflates me some. I could easily dissolve in tears if I let homesickness for Doris and everything I left behind take hold, so I don’t go there. I do need oxygen when moving about in condo but can take it off while sitting. I’m learning new skills for survival in this phase: move slowly, live consciously in each moment, meditate more, focus on one task at a time—enjoying a meal without reading, breathing consciously. My arsenal of heart drugs and new caffeine-free life also keeps me slowed me down.
I’m reading slowly. At Lisa’s house I read two novels (Kate Grenville’s Joan Makes History, a comic romp through Australian history lifted from a carton for Rollins, and A Mother’s Love by Mary Morris) and lots of newspapers and magazines. In my 3-4 days here I’ve finished three books—Atwood’s brilliant Oryx and Crake, Martha Egan’s delightful story collection La Ranfla and other New Mexico Stories, and The Crone: Woman of Age, Wisdom, and Power (1985) by Barbara G. Walker. I’d started Atwood in Nov but would only allow myself to dip into this treasure at the ocean, so I read most of it here now. As with most of Atwood’s negative utopias, it stuns me with the inevitability of our species’ self-destruction. Martha’s stories brought me back to the loco ways in our land of enchantment. I was there in spirit yesterday when friend and fellow activist Martha with Corrales Residents for Clean Air and Water staged a demonstration against Intel, almost a chapter from Oryx and Crake or any doomsday prelude to Armageddon. The Crone surfaced in a carton I thought was all Lesbian Nuns but turned out to be an odd mixture of books to give away and to keep. My ecstasy discovering the ancient matriarchy during those Joplin years came back in a rush--my conversion to separatism, my radicalization.
Monday, June 20
Packing for Denver was easy since I’m taking no luggage except my so-called portable oxygen concentrator with its three heavy extra batteries for the four-hour direct flight and a shoulder bag with my drug arsenal in neatly prescription-labeled baggies, quart Ziploc of cosmetics, folder of FL Hospital and cardiologist reports, CD of stent insertion and catheterization (great for Monday night at the movies!), snacks, journal, mini Motherpeace tarot, old Sunday NYT book reviews, and a treasure: original paper edition of Audre Lorde’s Cancer Journals inscribed to me by my old friend and guru Dorothy discovered in a box never intended to come to FL (more on the box later).
I leave my condo at noon for Lisa’s house. We pick up the CD at Florida Hospital—not exactly on our way to the airport. Flight departs Orlando at 5 and arrives in Denver at 7:15 MDT. I gain two hours flying west. Doris will meet my wheelchair outside Frontier baggage claim with a bag of slacks and shirts for our visit to my Denver pulmonologist on Tuesday and to take back to FL.
Thanks to Jan Zimmerman in ABQ for walking me through setting up my blog and now adding five of my favorite Albuquerque theater reviews in a side bar. If you read my review of The Year of Magical Thing, click at the top for my review of for colored girls written the same weekend. For more, go to http://www.talkinbroadway.com and write my name in the search box. The link doesn’t seem to work this morning, so best way to find my reviews is URL above, search my name, and select a play.
Sunrise glowing orange now over the ocean on this Solstice morning. Enjoy!
Thursday, June 16, 2011
Wednesday, June 15, 2011
DeVore family
The DeVore family
The DeVore family is pampering me so much that I wonder where the fine line between my resting wisely and being just plain lazy falls. On Friday morning, Lisa (always veggie, sometimes vegan) made a giant broccoli cheddar omelet with a side of veggie “bacon.” We all loved the omelet and universally loathed the faux strips that looked ripped from some tropical scrub with their soybean origin way too visible. Dave took a bite and wondered if even the dogs, who eat anything, would stoop so low. We took bets. We expected Grandma’s hyper Chihuahua Leila, that she can’t have in assisted living, would snarf it down without tasting. But slow-moving 11 year old black lab Shadow would taste and spit. Wrong. Both dogs ate the strips.
Lisa and Dave took off at noon for a three-day cruise they’d planned to take while Cheyenne and I were in NY. I assured them we’d be fine, we have been. That night we watched my movie choice from Red box: The Illusionist. I loved the exquisite drawings of the Scottish landscape—the misty Highlands, islands possibly the Orkneys with burly men in tartan kilts kicking up scuffed shoes in a Highland Fling, and the steep streets of Edinburgh so familiar from climbing them in fall 2007. Cheyenne didn’t really care for its sad ending. “That’s French film,” I tell her. “They always end with sadness and uncertainty.” Cheyenne says Disney movies always set up some impossible problem and then solve it at the last minute so everybody’s happy. I go soft on my comparative film lecture about American adolescent tastes versus European realism.
Earth Mother Lisa takes care of everyone in a graceful dance that sometimes looks like spinning in place but flows ultimately forward. She and I have always had our mother/daughter mind meld connections and secret code of laughs. Now I observe her holding the core of an extended family sometimes in a frenzy of multi-tasking when she’s trying to finish the Girl Scout Troop financial report before the midnight deadline while downloading her latest shoot of mommy/baby photos at the Winter Park Hospital lactation workshop. Lisa has been an activist for animal rights and the environment ever since she took a class at Rollins in human-animal communication. She’s a fierce advocate for recycling, locavore eating, and rescuing sea turtles.
At 44, she’s crushed between the needs of two generations older and younger. She worries about her 92 year old granny in Arkansas, Dave’s 90 year old mother newly in assisted living in Orlando, her dad, and now me. She’s mother to Dave’s daughters from a previous marriage. Stephanie, 27, works here as Dave’s assistant in his 3-D construction business, which operates out of the family room. Twice a week Lisa watches 6-month old baby Ella so that Miranda, 25, can work and balance her life between stay-at-home mom and grown-up in the workforce. Jazzercise is her salvation. As registrar, she gets free dancing-to-the-beat classes, from which she returns refreshed.
Lisa’s two paying businesses are DeVore Photography and her job selling Mary Kay cosmetics. She’s always zooming in on detail—the sudden shaft of light illuminating the hibiscus. She snapped over 600 shots in nine days in Scotland with me in 2007. Some of these—a sun-dappled Highland cow sticking out her long curved tongue and a maze of mossy gothic arches in a ruined castle—have won ribbons at art shows. Scroll down http://www.lisadevore.com/ to Greeting Cards and Wall Art to see these images.
Red meat Republican Dave, 52, has his own balancing act, bidding on jobs, checking construction, orchestrating sudden repairs. Lately he’s been building frozen yogurt shops in shopping centers, but these times are hard for any small business, especially one dealing with new construction. He’s been brilliantly attentive to my needs, setting up a desk beside the window in my room for my laptop, connecting my portable printer. His three daughters clearly adore him.
We don’t talk politics in the DeVore house, but Lisa isn’t averse to playing it as a trump card with her lefty dad. Trying to convince him to pay more attention to Granny’s caregivers, she chided him, “We’re liberal Democrats, Dad. We protect old people.”
I love the high energy silliness of Cheyenne at 14 dancing into my room disco-style. Lisa claims Cheyenne is just like me, usually when she’s fretting about trying to get the attention of one or the other of us on our alien planets. Cheyenne calls herself a nerd. She’s a studious achiever who likes winning. At eighth grade graduation from Lake Eola Charter School, which focuses on science, she won the top award for foreign languages. She’d hoped to be one of the top two in science. On the last day, her science teacher gave her a pottery vase decorated with sea turtles, her obsession, and a card telling her she is his third best student, but each teacher could only give two awards. She was more thrilled with that than the language award. In fall she starts an International Baccalaureate program at University High.
Cheyenne loves theatre, especially Shakespeare. She goes to Shakespeare camp in July for the seventh summer. The other night she recited her whole Puck speech for me from last summer. Missing our New York trip saddens both of us, but we’ll go when it will be even better for both of us.
One of her last assignments before school ended was to make a book trailer. She made a 3-minute slide show on a novel called Bruiser about an outcast boy with super power to take on the pain of those he loves. She cast me as Bruiser, wearing her new fedora and skulking about with teen angst. Lisa played my scolding uncle. Miranda and her husband Kevin played a squabbling brother and sister, friends of Bruiser. Cheyenne was shooting my scenes right before we went to Lisa’s chiropractor on that not-fatal day.
Lisa and Dave returned from their cruise to the Bahamas glowing with slight pink sunburns, wiped out from dancing till 1:30. Lisa and I whirled through stores—my first outing since I came home from the hospital. OK, I didn’t whirl; I zipped around in a cart, not toppling anything.
Tuesday between appointments with my new local PCP and new Cardiologist, I got twisted around on my way to deliver Australian books to Rollins. I drove down familiar Winter Park streets sparkling with red tile roofs but turning the wrong way as if I were tangled in a Bermuda Triangle of my past—a nostalgia trap—and found myself in my old neighborhood where I drove right to my beloved little bungalow still in its web of trees and then into another jungle where I’d also lived. What should have taken less than ten minutes took half an hour—like the dream where you’re lost in a strange country, don’t know the language, know you have to get moving, but your feet become sandbags. I did get to Rollins, where the librarian met me at the curb, where I left the three cartons for her to go back and get a dolly. Finding the next doc in a place I’d never been in Oviedo was easy.
Tuesday evening I relished sushi with old friends in their Zen-peaceful WP home, where we mused on memoires of the 80s and present political disasters. It was a fitting close to my last evening in Orlando. Today Cheyenne helps me move into my condo on Indian Harbour Beach.
Thursday, June 9, 2011
Florida Journal
Florida Journal 2011 Friday, June 3
Last night I survived a heart attack! Amazing that it leaves me feeling healthier and more optimistic about the future! The cardiologist who worked me over in the catheter lab whooshing again and again up from my femoral artery into my heart to clean out the plaque, open the flow, and install the stent that stays, called it “the big event.”
I can’t say I didn’t feel it coming. Crushing chest pains have stopped me in my tracks whenever I was over-exerting in past months—more frequent in my sorting and packing mode. Sitting down in comfy recliner, deep breathing, meditating, enjoying my mountains usually got it to calm down. Any exertion with pulmonary fibrosis makes oxygen drop and heart rate speed up to compensate, thus straining the heart. I didn’t realize until I read the heart attack book they gave me here in Florida Hospital that high altitude itself can cause angina leading to myocardial infarction.
It’s never a good day for a heart attack. But If there were ever a good time and place for it, blacking out while waiting for Lisa in her chiropractor’s office scared me enough to ask for help. We were on the way for drinks with her old friend, the other Lisa, who calls me her second mom; she lived with us the last two years of their HS. A heart attack is nothing like happy hour margaritas.
Everything happened fast. 911 brought EMT team instantly. They took me to the closest ER, where the docs told me it was a heart attack, and I’d be taken by helicopter to the main hospital where a team was waiting. Flight medicine crew took me from Florida East ER to the Cath Lab at Florida Hospital in a record 18 minutes.
Cardiologist and crew got right to work. Although somewhat sedated, I was fully alert in parallel universes—one where I pushed with all my will against checking out but felt scared every time my blood pressure dropped and I started blacking out again and the other where I was calm in the face of whatever lay ahead. I had confidence in the team charging into my physical core. When I heard them joking, I knew I was out of the woods. From the outset they were confident. Now I’m delirious with joy to be alive.
Monday, June 6
I'm celebrating Day 4 of survival in my new cat life. I was released Sunday about 4 pm from Florida Hospital--about 5 miles from my little Winter Park bungalow that I loved. Cheyenne snapped my picture in a “Hallelujah I’m alive!” pose with the hospital ID bracelet still attached—not a fashion statement. Doris insisted I attach the picture to friend emails so you see I'm none the worse for wear. Today at Lisa's house I’m planning my future. I bought my airline ticket for trip to Denver pulmonologist at NJH 6/20-22, where I’ll spend two nights with Doris, who’ll drive up from ABQ.
Cardiologist said No to NY trip. Cheyenne took bad news very well. To my “I know you’re disappointed, so am I,” she smiled and said, “You being OK, Gram, is more important.”
My heart attack was the deadly sort that most often kills –esp women because symptoms are atypical. I’ve never called 911 before, but somehow I instantly knew this blacking out was urgent. Cardiologist who put in the stent showed me the video of the procedure afterward, and he showed it to Lisa. Today she told me that he said that my arteries were basically clear—no fatty build-up over time from bad eating that he usually sees. That makes sense because had a complete stress echo-cardiogram at NJH ten months ago showing no blockage. My PCP in ABQ wrote “good!” by my cholesterol score on my blood tests last month. I had the lowest possible cardiac risk. So I feel exonerated. But I did push myself too hard recently. What likely happened was ordinary plaque was dislodged (stress and strain?) and platelets rushed to the site and created the blockage in my right coronary artery where I now have the stent.
I woke Sunday in hospital with my memoir of this new adventure rolling in my brain—stories of the dramatis personae of medical world that flashed through my life in 3 days. Call them healing angels or captors I must befriend lest they kill me. Later for those stories.
Thursday, June 9
Yesterday I was feeling fragile and shaky enough to cancel today’s plans to go on Lisa errands and drop off cartons of Australian books at Rollins. I didn’t think I had stamina even for a car ride. Now at 6 am a week since my “incident,” I’m feeling stronger. I’ve been moving slowly from bed to desk with laptop, needing oxygen when I move but not when I’m reading in bed. We can add the book drop to our next Tuesday schedule between appointments with my new local PCP and cardiologist.
Last night I wrote a draft on the dramatis personae of medical world but woke this morning revising what seemed too self-serving. Perhaps I can be forgiven exhibiting the euphoria of one who’s recently passed through the shadow of the valley of (“Jolly Green Giant” offers Doris on the phone last night). I imagine I’m saving the people I encounter who were actually saving me.
These days being sort of bed-ridden I’ve been awash in homesickness for everything land of enchantment. Joining the DeVore family watching an episode of the TV series “In Plain Sight” filmed in Albuquerque, I got weepy seeing the familiar adobes, my glowing Sandia Mountains, even the flash of a pastry box with “Flying Star” logo. Thanks to massive doses of prednisone, I can’t sleep, so I write and feel alive and strong. Announcements of theater openings in ABQ have me mourning what I left behind, not being able to review the Shakespeare festival at the Vortex, the second annual SoloFest at the Filling Station where I performed my Mabel show last July.
It’s the people in our lives who keep us alive—old friends we’ve known since childhood and people who rush in to save us because that’s their job. I’ve been overwhelmed by the outpouring of love, cheer, wit, and hope of my vibrant hilarious friends. My cell rings with area codes I can’t immediately identify, and then it’s a familiar voice. Sandra was ringing me from Melbourne, Australia, just as I was being wheeled into the cath lab, so Lisa took the call. Sandra called back the next day and forwarded my news to friends around the globe in International Women Playwrights. My best friend from 3rd through 8th grade at St Jerome in Chicago, who was picking Cheyenne and me up at LGA today, calls and my cell dies from overuse. A friend from Edgewood HS calls next day from Madison and my battery dies again. I can’t keep it charged. I’m delighted to hear everybody’s story—where they are right then—in their garden, going on tour with a show, going to the Berks, getting ready for cataract surgery, making chicken curry. An old friend from 40 years ago in Fayetteville, finishing her day as doctor in California is putting me in her healing circle.
While they’re still sharp in mind, I want to remember the angel/captors of medical world who crossed my path and saved my life. I may never see Dr Hussein again, but he gets top billing for opening my right carotid artery. As he whooshed in each time, he seemed to be exploring the difficult tributaries of the Nile in my arterial branches, and I thought with wonder that everybody’s arterial branching is a bit different exactly like river tributaries. When I thanked him for saving my life, he grinned. “It’s our job.”
I don’t know anybody’s name on first EMT crew who started asking me stroke questions—What’s the day? Who’s the president? I answered really fast because I knew it wasn’t a stroke. My bp drop got them starting an IV in the ambulance. Two ER docs at FL East, especially a woman with lovely Brit accent, said my alertness to atypical symptoms saved my life. She assured me I’d survive—flight crew on the way. I asked a sweet 20-ish nurse named Megan to put her healing warm hand directly on my heart. I announced, “You all are diagnosing, but Megan is actually healing.” She beamed, and I pondered whether it was appropriate for me to be giving orders and evaluating performance considering my vulnerable position. They seemed amused at my chutzpah.
Flight crew zoomed in in royal blue uniforms looking like astronauts. Flight nurse Mike took over. He and Todd raced down the hall with me on a gurney to helicopter. After an amazing smooth flight, they raced me from helipad into hospital. I enjoyed the brief warm sun on my skin. They raced to the cath lab. Next day I was amazed when Mike showed up in my ICU unit still in astronaut blues to see how I was doing and chatted for an hour. He thought I’d hit it off with his dad from the Ukraine who had a PhD in languages from University of Toronto and who loves to travel the world and meet everybody. So I told Mike the story of Intel destroying the people and animals of my village, Corrales, NM, pumping their toxic gasses and fine particle silica into the air we breathe and getting away with murder all for greed. He got fired up. We should get Erin Brokovitch. I should write a book. I told him that Barbara Rockwell, who’d been part of the fight against Intel from the beginning, provides comprehensive research in her book Boiling Frogs: Intel versus the Village. I said they’d tried in the nineties when the Intel plant expanded. Like Lisa, he told me I’d been afflicted with my lung disease so that I could save the world from corporate monster polluters.
My ICU nurse Karen, her Norwegian blonde hair in a French braid, ministered to my every need on Friday when I was totally bed-ridden. When Lisa brings me a beautiful pear, we all admire it. Karen says, “I could draw it.” She tells me her story of getting cold feet at the last minute when she was just about to get in Cleveland Art Institute. ”Now it’s too late.” Her face elongates with the loss of her dream. “No, it’s not. You can always pick up your art. You can always support yourself as a nurse.” She tells me about her mother and sister in Ohio and all their family dramas. I tell her to read The Artist’s Way by Julia Cameron. She hopes I won’t get transferred upstairs until near the end of her shift, and she gets her wish. She takes me to my new room hugs me goodbye.
My day nurse for my next two days, Ruth from Nova Scotia, is brisk efficiency. When I tell her I’m an English prof, she groans, “I hate writing. I have this paper to write, and I can’t get started.” While she’s checking my vitals, I start quizzing her on her assigned topic: alternative medicine. Writing teacher kicks in. I assure her we’ll get started on that paper before I leave. Now I’m wondering about Karen and Ruth—the art and the writing. I only know their first names.
Ralph, the ventilation engineer, checks every room in the hospital every day. “I’m 81 years old. Don’t smoke. Don’t drink. Stopped chasing women years ago. A doc here says’ Hey Ralph. I want your job when you retire.’” He sizes up my beautiful daughter and says, “I can tell you two are related, and I can see where you get your good looks.” He tells me,” “I bet you were a beauty queen in your day.” I laugh. I want to tell him this is my day, but he doesn’t draw a breath. “You know,” he continues, “I’m gonna see you in the Publix line some day and scratch my head trying to figure out how I know you. You’re sharp. You’ll remember me and say ‘Hi Ralph!”
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