Sue Katz: Consenting Adult

Celebrating the Life of Is Szoneberg

Today I got up at 5:00am in order to be fully ready for the funeral of my dear friend Is Szoneberg in Hawick, Scotland. I joined the funeral by Zoom, with a perspective from the rear of the hall, and even without the intimacy of sitting among loved ones, I was profoundly moved by the service. It opened with Elvis singing “Only Fools Rush In.” Is requested we wear pink, her favorite color. Our colleague and friend Jane told me that she wore pink under her scrubs at work this morning, since she had to miss the service.

It was conducted by a Humanist celebrant, which means no mention of any gods or religion – just to my taste. The facilitator is a lesbian and she was able to convey an accurate and authentic impression of our Is (Isobel; Isabella) and of her commitments to her sweet wife Anne (“my best girl” she always said) and to the community of women. It was an exquisite, heartfelt celebration.

Is and Anne pushed past every obstacle to social recognition of their love over decades. When civil unions were finally available, they got a civil union. When marriage was finally available, they got married. They were fully committed and they wanted the world to know.

Is got a form of cancer that is a silent killer and by the time it was found, it was much too late to do anything about it. She was sent home to receive palliative care and to say her goodbyes. Is wrote to tell me the bad news and Anne facilitated a phone conversation between Is and me that lasted three quarters of an hour. I thought I’d be able to have one more call with her, but she was already unresponsive the following week.

When I got the job as London Manager at CSV (Community Service Volunteers) in 1991, Is was then Scotland Manager. We bonded very quickly, being the only two lesbian managers in this large UK non-profit. Her wit and her sincerity won her great popularity on the Management Team. Everyone appreciated her remarkable ability to use good humor to calm down disagreements in the Team.

Is and I socialized outside of work when she was in London or when I visited her in in the north of England, where she was living when we first met. My first experience of karaoke was when Is, after some liquid encouragement, was persuaded to take the mic in a bar there and let loose.

Fast forward a decade, during which both of us earned multiple promotions, when due to some so-called “re-structuring,” all middle managers were let go, myself included.

Because I was in my 50s, it was hard to find another job and I began to freak out. I had been supporting myself since the age of 17 and it was terrifying to be out of work. Is began to call me daily. I mean every single solitary day. She called me without fail for almost a year until I finally accepted a job in the States and flew to Boston. I will never forget that profound act of kindness and support, her sense of solidarity and friendship, her generous love. I will never forget Is.

 

My 365 Day Anniversary: March 10 2021

365 days ago I understood that I needed to shut my door against Covid-19. But first I had to make some stops. I went to Trader Joe’s and stocked up with multiples of everything that seemed crucial. I bought liquid dispenser soaps, bars of soap, shampoo, cleaning products, toilet paper, tissues, paper towels, hand cream, and food galore. I went to Walgreens and snagged medical gloves, Clorox spray, wipes, Vitamin C, and candy. At the bank, I got hundreds of dollars of cash, not the least $1 and $5 bills for tips I anticipated giving. I stopped by the post office and loaded up on local and overseas stamps, before gassing up the car, although I did not foresee that it would not be touched by human hands for the next 50 days.

I’m not sure how I knew so clearly what to get and what to do to prepare for a pandemic and to weather a shut-down, but I attribute my prescience to a life-long Holocaust mentality. I suspect that this is the result of a genetic propensity, in a metaphorical sense.

My mother had infinite cheap plastic handbags to match her every outfit. I went through them when she died. (I found over $700 hidden around her place among her things and I bet I missed plenty.) Each purse had a $5 bill, one of those fold-up plastic rainhats women of the 1950s depended on, a comb, and a disposable razor blade with which she scraped at the old-lady whiskers she grew. This is my heritage: a strong streak of just-in-case-ism.

I have squirrelled away $5 bills in the pocket of every coat and jacket I own – just in case. Likewise, I have food in every bag, in every room, and in the glove compartment of my car, just in case. I’ve been saving money all my life even when I scarcely made enough to live on – just in case things got worse. And “just in case” has come true for us all this year.

I live alone in an apartment that has one large room and then a little bedroom in which I can do nothing but sleep and dress. There’s not even a place for a chair. In short, I’m living and writing and eating and entertaining myself and reading and phoning and exercising and Zooming in this one room. But I’m lucky to have a fine view of a pond and a balcony on which to sit and watch the sunset, weather permitting.

After years of begging, I had succeeded a couple of months earlier in convincing my landlords to change my scuzzy wall-to-wall carpet to lovely new grey carpeting. I also found just the perfect credenza (a long sideboard) in February following a couple of years of searching. My friend Debi, who can do it all, came over and spent an entire day putting it together. I disposed of the heavy oak Art Deco pieces that came over to the States with me from London in 2000 – pieces that were too big for my one room. I hung the original collage paintings of Sandy Oppenheimer - a self-portrait and a portrait of Chadwick Boseman -- over my marble sculpture by Jaya Schuerch. In short, my home was much improved and comfy for settling in.

From the start, all the fatality stats were showing that hypertension was a top complicating and deadly factor when it came to Covid. My Dr and I had been struggling since the November before Covid to get a grip on my high and erratic blood pressure. I was determined to survive, that is, to avoid Covid, and I set myself restrictions far beyond those of many other friends. I was inside for the long haul.

In that first week or so I negotiated an arrangement with my bestie, Barry. He also lives alone. He is also a very cautious person. We decided to weather the lock-down together/apart, to speak daily, to provide support. Neither of us would see any other friends in person so that eventually we would actually meet safely. Barry was the first to buy good commercial masks, and he mailed them to me. But I was a bit stuck and could not go out – because of the elevator.

My building was built in the early 1970s and the single elevator – like the rest of building – has never been updated. Few workers today know anything about this elevator’s ancient technology and parts have long since ceased to be available. A maintenance company finds substitutions and comes to tinker whenever it gets stuck. Fifty apartments use this elevator and there is no obvious ventilation. I did not feel that I could use the elevator to go down to my mail (7 stories) or my car (8 stories). I was afraid it would be full of cooties and I’m sure I was right.

My mailman, always a sweetie, started bringing my mail up to the 7th floor and leaving it outside my door whenever my little mailbox became crowded. A young dance friend picked up my prescriptions from the pharmacy when they were refilled. A volunteer did my first shopping, arranged by a mutual aid group in my town, before I found an indie professional shopper, a single mother whom I tip 35% because she is doing something for me that I won’t do myself.

Laundry was the biggest problem. No way was I going into the shared laundry room – shabby enough in the best of times. My friend, Bren, came to visit by standing down in the parking lot as I leaned over the balcony. The distance is so far that we used our phones like walkie-talkies in order to hear each other. She insisted on taking my laundry. I stuffed everything into a big black plastic bag and heaved it over my balcony guard rail. It landed with a dramatic explosion that brought people running out of their homes up and down the block.

Bren and her friend took my car for a drive around the block at some point, but it was only on May 1st, 50 days after I had gone inside, that I got to experience the outside world via my phone. Barry came over to drive my car around. I wrapped the keys in a padded envelope which I put into another padded envelope that I tossed off my balcony. It fluttered down to him as gracefully as Pavlova’s arabesque. He got in my car and FaceTimed me. As he drove my car around my neighborhood and then further into my little town, he pointed his iPhone camera towards the road. I could see what he saw. I was visually riding shotgun. Flowers were blooming, bushes were verdant, there was a world out there. I sobbed – for all I had missed, for all who were dying, for all who were struggling. To celebrate my tour, I ordered some pasta from a local restaurant that not only came out and put it in the trunk – now known as curbside – but also donated a meal for a hungry local elder for every meal that was bought. Barry put the food in its bag inside the elevator and sent it up to me. It was the first food I would taste that I hadn’t cooked myself. I wrote my first pandemic blog.

Only on May 22, after 73 days inside, did Barry find face shields for sale online. With good masks and the protective shields, we felt sufficiently safe to go up and down the elevator. It meant meeting a human in person for the first time in over two months. It meant driving my car. I decided to “go away” and drove myself to the town where Barry lives and entered his apartment. I was inside other four walls and it was as exotic as my trips to Machu Picchu or Pusan.

Now we get together for 20 hours each week – from Friday dinner to Saturday lunch – and each Saturday, if it isn’t raining or snowing, we take walks in parks and woodlands and at lakes we never before knew existed. I’ll Google a nearby town – say Carlisle, near Concord – and inevitably there will be somewhere magic to visit and stroll. We have been amazed at how little we knew about nature spots right in our own towns and the surrounds.

Everyday I say to my bestie Sandy, who lives in Northern California, but with whom I talk daily: We are among the lucky ones. We have a roof, heat, the interwebz, food, safety, cars. We have art to work on with passion. I know I’ve had it significantly easier than most people: I’m retired so I did not lose my job or my income. I’ve lived alone since 1977, so nothing new there. I’m a writer and used to sitting at this desk many hours a day. And the biggest bonus: I’m going to get out of here in time to see the Spring this time.

My biggest complaint (to myself) is how busy I am. I have a minimum of four Zooms per day. Two are permanent weekday commitments. I have a Silent Zoom writing session each morning at 9:15 with my esteemed London writing buddy Liz: throughout this pandemic, it’s consistently been one of the most productive hours of my day; I have a Zoom workout with Barry at 11:00 or 11:30: I’m doing some Tae Kwon Do again to spice up the exercising. I teach writing every Wednesday for Rainbow Lifelong Learning Institute. And then I might have a board meeting or an LGBTQ elders get together or the job of running a panel for a huge online lesbian literary festival or a Zoom/phone call with Sue in London or Schweid in Barcelona or Jaya in Italy or Kaz in Bristol or Sarah in Dublin or Yael in Israel or Verandah in Vermont or Vicki in New York or Melsen in Hudson or or or.

Today marks a full year since I met any human other than Barry unmasked and undistanced. The only other four walls I’ve been inside have been those of doctors’ offices. I will be fully vaccinated on April 12th. I do not know what life will look like in a world with ever-evolving viral mutations.

But I do know that my first excursion will be to the Dollar Store. The next day I’ll go to the podiatrist. The day after that I’ll be off with Barry for two days to a hotel on the Cape. Two whole days seems bold enough for a first outing. I cannot yet see past that moment.

I should have posted this yesterday, but I seem to be running on "pandemic time."

RIP: LOIS JOHNSON, leading light of Daughters of Bilitis

This tribute was adapted from a brief portrait of Lois Johnson that I wrote when she and her life partner Sheri Barden were among the honorees at an event I MC'd held by Rally, a Boston area group for older lesbians. Lois died yesterday. Sheri and Lois (in pink) are seated in front.

Lois Johnson was a local girl: she was born in Stoneham in 1931 but raised in Everett by a loving extended working class family. She was always a straight-A student in high school. At Boston University, she studied English and childhood education, planning to be a school teacher like her older sister. Lois was very active in the Christian Science church, teaching Sunday school and conducting services, but, she told me, “I wasn’t Miss Goody-Twoshoes.” Immediately I heard Sheri in the background yelling, “Yes you were!”

Lois worked in education for a couple of years, but she wasn’t that comfortable with it. So she got another a degree from BU: this time in journalism. She moved to California where she was a success in the field of advertising and journalism and worked for the Presidio army base newspaper, while living at the YWCA.

When her father became ill, she returned to Boston where she continued to be active in the Christian Science church. She met her first girlfriend and lived together in secret for five years. When in 1964 that woman foolishly dumped our Lois, some gay men fixed her up with Sheri Barden who moved in with her in Brookline.

When they rented and restored a 19th C house near the MFA, they decided they liked that kind of thing. Because banks would not then give mortgages to women, a gay male friend helped them to get a fixer-upper in the South End. When Lois’s long-time job as a producer at WGBH evaporated, she decided to go into real estate, where she spent 40 years. She missed that work after retiring.

About five years ago Lois fell and broke her hip so she and Sheri had to move out of their house with many stairs. The were welcomed with great enthusiasm by Springhouse, an elegant assisted living facility. Like in any such institution, the women ran into homophobic staff occasionally. They had their strategy for dealing with it, however. Said Sheri, "I'm so nice to them, they can't help but love us."

In fact, the very evening they moved in, the Springhouse administration wanted to screen "Gen Silent" (dir: Stu Maddux), a powerful, historic film about the intersection of queer and elder, which kicked off a vibrant movement around the rights of old LGBTQ people. Lois and Sheri were two of the stars of the film (and of the movement), and their wit and candor and obvious love won the hearts of all who saw it. Sheri insists that their role was to be "comic relief," and the women sighed over having to see the film dozens and dozens of times when they appeared at sell-out screenings.

For 15 years Lois was President of Boston’s DOB – Daughters of Bilitis – perhaps the first lesbian organization with chapters across the country. Sheri and Lois welcomed hundreds of otherwise isolated lesbians to their rap sessions. They embraced women who needed someone to talk to, someone to assure them that their feelings were legitimate. Sheri told me: “Lois was a wonderful leader because she didn’t judge anyone – never put anyone down, everyone was welcome.”

The death of Lois Johnson leaves a rip in the fabric of the Boston queer community. On a personal note, I was always gratified by Lois' close readings and gracious comments about my books. The couple never missed a reading when I was introducing a new book. Lois' generosity, dry wit, and loving presence will be profoundly missed.

This is the trailer for "Gen Silent." If you haven't seen it, you haven't seen one of the best documentaries evah!

Sharing My Dad’s Feet

I had a sweet dad and a dreadful mother. Saul didn’t protect me from her, but he stood up for me in other ways. He drove me to my black boyfriend’s house and then drove us around when Pittsburgh was too segregated for us, at 15 or so, to be open about being together, and he let us kiss in the backseat. Unlike my mother, he accepted my girl lover the next year and my lesbianism the rest of his life. In fact, we used to armchair cruise the passing women when we were hanging out together somewhere public. He was a brilliant dancer and in later years we used to lead the women at the elders’ tea dances side by side.

I used to look just like my dad – I have his beautiful eyes – and I loved that. But as I age, I look more and more like my nasty mother and that freaks me out. I see my hands and arms turning into hers – despite how much I loved my dad’s muscular forearms and veined hands.

For the last year I have been having terrible trouble with my feet and ankles. The result is that I can walk less and less and in fact at this point even a block or two does me in. I can’t stand in one place for more than a couple of minutes, which generally prevents me from attending dance lessons. I’ve seen six medical people, received six diagnoses, and been subjected to six failed treatments. Only one of these people has ever followed up to see how I’m doing after their failures. Combine that with a knee they say needs replacing, but which I can’t replace until a solution to my feet problem works, and you can understand why I am now the owner of two canes and one disability parking placard for my car. I am learning how to stay in the game of my beloved West Coast Swing, by perfecting a way to lead without really dancing, without really moving.

My dad died in 2004 and my mother three years later. I had three days in Pittsburgh to clear out their apartment and I took big garbage bags and emptied their file cabinets into the bags and threw them out. I had a charity come get all the other stuff. I made up two boxes of papers I noticed while dumping the rest that I thought I’d want and I sent those boxes home to Boston, where they have remained unopened.

This week I opened one of the boxes. First, I found a folder of interesting papers from my dad’s service during WWII. Underneath that was a manila envelope full of funeral stuff and obits. And then an astonishing two-page official-looking letter from 1996 turned up. It was from a vascular specialist physician to another physician, apparently my dad’s primary care person. It is titled “Saul Katz” and it describes him as a 78-year-old dancer with mysterious feet and ankle problems (the doctor calls them “interesting symptoms”) that the original doctor couldn’t figure out. The Dr. describes Saul as “overweight, awake, alert, and oriented” – which fits me too.

The vascular specialist did a complicated work-up on my dad but could not figure out the problem. He observes that the pain comes from walking or standing but that Saul, like me, is pretty much without pain while sitting. He writes: “I don’t have a perfect handle on this,” and goes on to make multiple speculations. In the end he says, “I’m sorry that I can’t give a definitive answer.” Nor have any of the six medical people I’ve seen. What a disappointment that medicine does not seem to have progressed around feet since the 90s.

I always thought that my love of dance was a reflection of my dad’s influence – and my commitment to leading exclusively as well. I am freaked that I have inherited this mystery disability as part of the genetic package. I am my father in so many ways, but at least I haven’t gone bald. Yet.

I write this at night, just as Father’s Day is ending.

An Interview with author Stephanie Schroeder, co-editor of Headcase: LGBTQ Writers & Artists on Mental Health and Wellness

Stephanie Schroeder – writer and peer advocate – and her co-editor Teresa Theophano – writer and social worker – have brought together 38 important pieces of writing on the topic of LGBTQ mental health today in their anthology Headcase: LGBTQ Writers & Artists on Mental Health and Wellness. Stephanie is known for her hard-hitting socially-aware journalism and one other book, her moving memoir.

The enthusiastic reception of Headcase is reflected in its reviews where comments call it “ground-breaking,” “poignant,” “terrific and essential,” and “a diverse democracy of voices.” I spoke to Stephanie Schroeder about the process of putting together such a pioneering work.

 

Question: How did you and your co-editor meet and decide to work together on this project?

Stephanie Schroeder: When Teresa read my memoir Beautiful Wreck: Sex, Lies & Suicide, it resonated with her. She had originated the idea of Headcase and then reached out to me. We hadn’t met before. We’ve been working on Headcase since 2014 and it has been a dream collaboration. We agreed on everything, from the vision to the submission guidelines to the final choices out of hundreds of submissions.

 

Question: Now that the book is out and you have just finished a national book tour, are you still friends?

Stephanie Schroeder (on left in black shirt): Yes! Not only have we stayed friends, we also plan to co-write another book focusing on LGBTQ suicide.

 

Question: How did you decide what to include in Headcase?

Stephanie Schroeder: We chose selections on the strength of their writing and content. We ensured a broad demographic around age, race & ethnicity, sexual orientation & gender identity, socio-economic status, geography, and diverse viewpoints. Some are grounded in an anti-psychiatry position while others are from a more conventional treatment viewpoint. We included essays, poetry, fiction, visual artwork, and a 13-panel comic written by a young transperson who documented their days in the hospital for mental health issues.

 

Question: Why is this anthology necessary?

Stephanie Schroeder: Because LGBTQ peers and consumers of mental health services are under-represented in the literature. Most books are written by professionals for professionals or clinicians for clinicians. We believe that LGBTQ peers are experts about our own care. And in fact nothing like this book has ever existed before. It is truly a vanguard work in the field of mental health literature.

 

To learn more, check out the Headcase anthology online and on Facebook:

www.headcaseanthology.com

Facebook: Headcaseanthology

MY KNEE IS AS SHATTERED AS THE COUNTRY

Here, first, is the very short version:

I fucked up my knee dancing. A PT misdiagnosed it and so I continued dancing. The knee locked and the pain became unbearable. An MRI showed a shredded meniscus on both sides of the knee and a bunch of unanticipated arthritis. Everyone predicted surgery, perhaps a knee replacement. My chiropractors sent me to a non-surgical orthopod with whom I’ve agreed to try a non-surgical strategy.

Here, now, is the story with emotions and characters and sham surgeries:

A few weeks ago I was dancing, as is my wont, at my favorite venue’s monthly Saturday night dance when I felt something pop and my right leg locked. I apologized to the woman I was dancing with and limped home.

The next day I went to Vermont, as scheduled, but still couldn’t unlock my leg and could barely walk. Valerie and Mark’s 4-year-old had to carry my cosmetic bag up to the bathroom so that I could basically hop up the stairs. Susan had to give me her arm when we went to the hotdog restaurant to hear Patty Carpenter make fine music.

I went to a loud Trumpy PT who insisted my problem was a tight IT Band, so I returned to my favorite dance class, after which I was in excruciating trouble. My great chiropractors identified a problem with my meniscus and gave me the name of a non-surgical orthopod at the clinic I belong to.

I had an MRI on Monday. The terrifying results arrived on Tuesday: shredded meniscus on both sides; “diffuse bone marrow edema;” fissuring of cartilage; massive swelling; very advanced arthritis – and much more. A friend who works in rehab read the report and talked of knee replacement. I live alone. I have a book coming out and a conference to attend. It’s more than bad enough I can’t dance.

Meanwhile, I had to cancel anything that involved standing or moving, including my work teaching fitness and dance to elders. My doctor suggested a cane. The nurse brought me one along with a copious sheaf of paperwork in which I had to promise to pay for it if my insurance didn’t. “But I have Medicare. Don’t they pay for canes?” She wasn’t supposed to say, but she thought not. “How much does this cane cost?” No one knows until the bill goes to insurance and is rejected and falls into my lap. “No thanks.”

Instead I bought one from Goodwill for $3.00. That evening my friend Bambi, a medical person, adjusted the cane for me and I watched YouTube videos to learn how to walk with it.

Today I met with the young, sweet non-surgical orthopod. He fulfilled my primary wish and gave me a cortisone shot (elder friends of mine call us Steroid Nation), as well as this big ole knee brace with metal hinges. He recommended a certain PT in the same building, with whom I made an appointment for next Friday.

He told me of a study in 2002 described at this link in comprehensible and fascinating language outlining the reasons many are skeptical about arthroscopic knee surgery. I’ll include a quote at the end of this blog for those who are interested.

The orthopod doctor said I should aim for 50% improvement in a month. I’ll take it! I could live with half the pain and twice the mobility, not to mention fewer pain pills. I asked him what I could or could not do and he said that obviously I cannot dance, but that otherwise to listen to my body. Right now my body is asking for yet another pain pill. Right now – besides dreaming of waking up and finding out that Bernie is president – I’m hoping that the cortisone shot is going to click in and do its job.

Thanks to everyone who has proven to really give a shit about me and my wounded knee.

THE END

http://robertclaremd.com/im-skeptical-about-arthroscopic-knee-surgery/

“But it wasn’t until 2002 that we first had any real evidence about whether the procedure actually worked, when a novel study appeared in the New England Journal of Medicine. Somehow doctors convinced 180 veterans from the Houston VAMC to enter a trial wherein patients were randomized into 1 of 3 groups: arthroscopic lavage (washing the knee with at least 10 liters of fluid), lavage with arthroscopic debridement (trimming and shaving the joint), or sham surgery wherein patients were given an anesthetic and surgical incisions made through the skin without actually operating on the joint. In the latter group, surgeons called for instruments as if performing the procedure and even mimicked the lavage by splashing fluid onto the knee and floor. God bless the vets who volunteered for the trial, the doctors who enrolled them, and the hospital’s Internal Review Board that had the intellectual honesty, curiosity, and cajones to approve the study. Neither the patients nor the providers who examined them afterward knew which had received the sham or the real surgery. Patients were examined at multiple intervals for up to 2 years afterward and compared with regard to pain, mobility, and function.

“And guess what? There were no differences between the groups at any time during the follow up. The sham surgery worked just as well as the real surgery.”

And if you want an additional article, here’s another:

http://www.regenexx.com/does-meniscus-repair-work/

Where Have All the Lemons Gone?

Last week I decided to go out of my way to shop in the newly-reopened Market Basket, where an odd and riveting labor action just ended. I had the distinct impression that the Market Basket prices were higher now than before the action that closed them down for weeks and weeks. I got to the lemons, which had always been two for $1.17 and they were now 99¢ apiece. I bitched about the hike in price. Afterall, I use about a lemon per day because the only liquid I drink is black tea with lemon - all day; every day.

I was in another supermarket where the lemons are usually 69¢ – up to 99¢ there too. They were lousy specimens as well – thick, spongy outer skins, minimal juice. I was on the phone with a friend. I said, projecting a fantasy nightmare, “The next thing you know something cataclysmic will happen in the agricultural world and Trader Joe’s won’t have any lemons.” That’s really where I buy my lemons: they have always been 49¢ each.

My nightmare came true. At Trader Joe’s yesterday there were no lemons. They had limes. They had citrus fruit. No lemons. I asked a helpful employee and he told me that they are unable to line up a producer or distributor of lemons. He cited two factors. One: There has been a significant drought in California and Mexico, so the crop is shockingly weak. Two: The farmers in Mexico are being convinced to grown corn instead of lemons for use in something industrial that I can’t remember.

Okay, okay, this is definitely a First World problem, but even for a person like me who leaves the environmental work to others (we all have to specialize, no?), this is a moment of note. Lemons are one of the basic foodstuffs in my world. Free the lemons!

Remember Polio

In February, 1954, Jonas Salk led the first mass polio inoculation among 1st, 2nd, and 3rd graders in about 20 Pittsburgh, Pennsylvania elementary schools, including mine.  The list is below. We knew we were part of an historic field trial, and our parents were desperate. Just two years earlier 58,000 Americans got polio, thousands died and many more thousands were disabled. My brother, older by three years, was one of the lucky ones who got polio but did not suffer terrible lasting consequences. Others in his class were not so lucky.

I remember the long tables with white tablecloths and the nurses in white uniforms in our school’s gym. I remember the gym mats laid out for the “girls” – who were expected to feel faint after their shot. And I remember a sense of importance – that we little kids were brave pioneers.

Salk refused to patent the polio vaccine, famously saying "There is no patent. Could you patent the sun?” He is said to have given up potential piles of money in exchange for the attempt to eradicate this nasty disease with a cheap vaccine. However, there is some controversy around this, with some scholars saying that the National Foundation on Infantile Paralysis (later the March of Dimes), which supported the polio research, had already concluded that the vaccine couldn’t be patented.

By the following year this experiment was declared a success – it actually worked – and Jonas Salk became a household word – especially in households like mine. Salk was, like my parents, the child of uneducated Jewish immigrants. In a time when anti-Semitism and racism were openly practiced – for example, there were many neighborhoods in Pittsburgh where people of color and Jews were unable to buy property – Salk was a symbol of pride to the community. After all, “A 1954 Gallup poll showed that more Americans knew about the polio field trials than could give the full name of the US President.” (Wikipedia).

Albert Sabin, Salk’s arch-rival, developed an oral vaccine that was licensed in 1962. Savin never achieved the same rock-star status as Salk, although it was widely used around the world. The two got into an ugly dust-up apparently, but the important result is that polio is no longer the kind of threat described in the scary novel Nemesis by Phillip Roth, which takes place during a 1944 New Jersey polio outbreak. I recently read it in the car and was reminded how the timing of the vaccine preserved my generation and those coming after us.


The participating elementary schools, mine included, according to the Pitt Chronicle: “In February 1954, Salk inoculated first-, second-, and third-grade students from Leetsdale, Emsworth, Sewickley, Fair Oaks, and St. James elementary schools. Later that month, inoculations were given to children at 19 city schools: Arsenal, Belman, Bennett, Burgwin, Clayton, Colfax, Conroy, Crescent, Davis, Dilworth, Forbes, Frick, Fulton, Linden, Madison, Rogers, Sunnyside, and Wightman. In March 1954, students were vaccinated at seven parochial schools: St. Lawrence, St. Stephen’s, Holy Rosary, Sacred Heart, Resurrection, St. Basil, and St. George.”

From Tamiflu to Bacon

To recap: It was a week ago this hour that my writing students watched in horror as I came down with the flu in a matter of minutes. They fled, and Tuesday morning I went to the Dr for an inconclusive flu test. On Wednesday, when my fever exploded from normal to 101.5 in an hour or two, I paid my fuckin $95 co-pay for Tamiflu – the anti-viral that mitigates the disastrous influenza symptoms I wasn’t supposed to have after getting the flu shot months ago. So much for inconclusive. So much for immunization. So much for Medicare. Life is so drenched in lies.

“By the time you finish these 10 pills in five days,” the pharmacist told me, you will be over the flu.”  I cancelled all my work and settled down in front of the Olympics. Within a day the Tamiflu started to work. Each day I improved – there was a shitload of improving that needed doing – and last night I took my last pill.

This morning I woke up without the sense that a rodent was rotting in my mouth or that my gut was roiling with gangrene. I could taste my Yorkshire Gold tea. I could eat a yogurt without feeling repulsed.

I woke up wanting to write and I wrote. I worked on the back cover for my book Lillian’s Last Affair. I was able to talk on the phone. I grew bold and decided that, after being sick to my stomach for 5 days, I would go out and get myself any comfort food I wanted. Or, to put it more succinctly, I’d go buy a pound of bacon. I put on underpants and jeans for the first time in a week, a big sweatshirt over my pajama top, and actually drove to the supermarket. I picked up fresh vegetables, milk, and Ritz crackers (the only food that went down well over the week). I grew tired. I pulled everything out of my cart onto the conveyor belt, only to remember that I hadn’t bought bacon. I put everything back in my cart and, with difficulty, found the bacon. I headed back towards the register before I remembered I needed tomatoes and white bread for BLTs.

Now I’m home, too tired to contemplate my return to work on Wednesday, sitting with my BLT, watching the Olympics.

Someone who knows everything told me that the company that makes Tamiflu offered to just sell it to the government to give it to people cheap (like the flu vaccine), but the government didn’t take it. So did I mention that my co-pay on Medicare was $95?

Medicare Rip-Off (subtitle: I’m sick)

I’m teaching my Monday writing class and all is going well the first hour, but then in the final 30 minutes I suffer a sudden decline of health. Sniffles, headaches, an elephant sitting on my chest. My students notice, in horror, grab their notebooks and flee my cooties in all due haste.

On Tuesday I’m a mess and call my Dr. I see her at 11:00 and she checks me for the flu – many people are getting the flu despite having taken the flu shot as I did back in September – but the results are inconclusive. “Call me if your fever goes up.” I stop for chicken-soup ingredients and barely get my soup made at home before becoming too weak to eat it.

As my coughing worsens, I decide to cancel my Wednesday elder fitness classes – for only the second time in 11 years. That means getting some students to help me call 65 others. I have no voice, just some gravel scratching at my throat.

I barely sleep and on Wednesday morning my fever climbs from 99° to 101° to 101.5° I call my Dr and her assistant tells me to take Tamiflu – that they’ve sent the prescription to my pharmacy already. I call to check that it is ready and the pharmacist says, “You do know that the co-pay is $95, right?”

I call Coventry – the pigs who supply me with my Medicare Part D, serious rip-off artists. This is not my first run-in with this devil-masquerading-as-a-company. “Yes, it’s $95 co-pay,” the woman tells me after I have waited on hold for over 45 minutes. “Let me put you through to the Tier Exception team,” and I wait another half hour on hold, before giving up. I’m too sick for a war. And I’m too weak to drive. I decide to walk the two blocks to the pharmacy, since that only puts me at risk.

I feel like the tortoise in those commercials about tortoises preferring dial-up to digital. I walk a few steps, stop and try to breathe, before walking another few steps, my head lolling on my chest, my shoes dragging on the pavement. At one point, I start to flag and need to lean against the wall of a building. “You okay?” asks some man as he charges past me without waiting for my answer. “No,” I say too weakly for him to hear way up there ahead of me.

My throat is flaming, my lungs are struggling, my cough is off the charts. I need a solution. And if I didn’t have $95? If I didn’t have the strength to pick up the medicine?

My message: Medicare is nothing like I expected, having lived in places with a national health system, where there is a single charge across the board (like $10) for expensive medicines. Medicare turns out to be a complicated, convoluted, divided system which has handed private profit-making companies the right to rip-off seniors for their prescriptions and their “supplementary” insurance.

The good news? I get to watch hours and hours of Olympic skating without feeling guilty or being inconvenienced by such things as work or a social life.