Sue Katz: Consenting Adult

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.

Ever Had a “Wellness Visit”?

Yesterday I had the first of what, with luck, will be a long line of annual Wellness Visits compliments of Medicare. This replaces the sturdy “annual check-up” that those of us who see doctors have come to rely on as the one time during the year that one can arrive with a literal list of issues (I always have a copy ready for my doctor), from new bumps/lumps/discolorations to gassiness to blurry eyesight at the computer. Whatever ails you – put it on the list for your annual.

So what is this Wellness Visit and how does it differ? For one, I see an assistant and then a nurse practitioner – but not my doctor. I have to convince the assistant to check my height after she weighs me. “It was checked last year. It’s not like it’s going to change,” she says. Wrong – one of my concerns is that I am shrinking. Bone loss.

I wonder if she is the same young employee who, when I asked a couple of years ago about a hepatitis inoculation, told me that I didn’t have to worry because it was only for sexually active people! “Let’s make a bet,” I answered in anger, “about who is getting it more – you or me.”

This Wellness Visit involves no physical exam, no taking off of clothes, no touching. It opens with the assistant’s irritation that I have not brought the completed form – a form which I only find in my mailbox back home later in the day. She will not allow me to fill it out on the spot and insists on doing it herself, which, it later transpires, she does very poorly.

When I do see the form later in the evening, I realize that it has nothing to do with wellness and is, in fact, entitled “Medicare Health Risk Assessment Form.” It asks if I’m capable of basic activities – feeding, clothing, and bathing myself; shopping and cooking (not so good). It asks about home safety and falling down.

“Are you afraid of falling?” Of course I’m afraid of falling. Anyone who knows anything about aging knows that falling is something to approach with dread. But they don’t mean that. They mean, Are you walking gingerly, looking at the ground, terrified. Well then, say so.

They ask about nutrition. And about alcohol and drug use. The assistant kindly explains that by drug use, “They mean like marijuana and heroin.” Well, that narrows it down.

And they ask about “Your emotions and social support.” When I am going over the form again, this time with the Nurse Practitioner, I ask her, “And if an elder is isolated and has no social support, what do you suggest that she do?” As someone who has long worked with elders, I am interested in what resources they bring to bear on those with revealing answers.

“Some of them just don’t want to know anyone,” she replies with scorn. “I know all my neighbors. We have coffee together, our kids play together. Some of these patients don’t even know the name of their nearest neighbor.”

“Do you own your own house?” I ask her.

“Yes, in the suburbs. Of course.”

“Well, I rent, and I do not know my neighbors and I don’t really want to.”

“Why not? That’s ridiculous.”

“No, it’s rental. It’s big buildings. Neighbors come and go – they’re renters. There is nowhere to escape from a bad one. I can’t ‘go home’ the way that you do. They share walls with me. I want my privacy.”

I know so many elders in subsidized housing in large buildings who have to weigh how many intimacies to promote, surrounded by old people, many sick and needy, people one sees in the elevator, in the dining room if it’s that kind of facility. One makes choices.

The nurse practitioner lectures me about the function and structure of the ear for too long because she cannot answer a simple question: Should I get a baseline hearing test or not? She says she is not an Ears/Nose/Throat person.

At the end she sends me for blood tests. I warn the blood taker – my regular person isn’t around – that I have rolling veins and that if she misses, I do not want her to dig around in my arm. She misses and digs. I tell her calmly, “Remove the needle now, please.” She does and sulks. “You don’t have rolling veins. You moved. No one can do it if you’re moving.”

“I’ve been told for 66 years that I have rolling veins. Please bring me someone else.”

“They won’t get you either, with you twitching and moving.” She puts the rubber tourniquet around my other arm and then starts searching in my hand.

“Please bring me someone else.” She finally agrees, petulantly, and a man comes, I explain the situation, and although he too digs around, he does manage to extract some blood – although today I find out that it wasn’t enough for one of the tests. That’s a photo of my arm today, by the way.

So if you’re heading for Medicare, let me be your big sister. Be sure to ask for a follow-up appointment with your doctor in light of something or other that you bring up. Then you can actually sit down with her and tell her to check your lumps and pangs.

My Abused Tooth

“We’re going to extract that tooth,” Dr. Lumin said.

“What do you mean?” I had come in, as I had so many times before, for her to do her magic with cleaning and rinsing the infected gum around the abused tooth.

“But I have lunch with Gail and dinner with Barry.” She lets me out of the chair to call them and cancel my plans. I trust her, but I’m discombobulated, have had no time to prepare.

“People get quite emotional about their teeth,” she says. “To me, I work with them all the time. They’re tools. Very flawed tools. Even young people with perfectly healthy teeth have trouble. One patient bit into a hamburger and a piece of gristle cracked her tooth and she ended up with an implant. They’re like knees – we use them a lot but they wear out and often have problems.”

“Why today?” I ask.

“It’s time. I should have warned you. I’m surprised the tooth has held up this long.”

The original insult to this tooth dates back to the 80s. I was living in Israel and looking for a dentist to deal with some inflamed gums. Someone recommended a woman who had newly opened an office in their neighborhood. She looked in my mouth, shot me full of Novocaine, I guess. Did she use gas too? I can’t recall exactly, but I believe she did.

The next thing I know she had my mouth clamped extremely open and she was doing something that seemed awfully involved for some inflammation, but although I was grunting inarticulate questions and waving my hands, she ignored me. The next thing I know, she had amputated one of the three roots of a perfectly healthy, very necessary first molar on the upper left.

“It’s dead now,” she said. I couldn’t figure out what was going on. “And you’ll have to have a root canal next door.” Unbeknownst to me, “next door” was actually her brother and he did some sort of root canal. Was it the same day? After I had healed?

All I can recall is a terrible space where there shouldn’t be one; a murdered tooth essential to good chewing; a feeling of violation. And some time later, hearing that they were identified as scam artists. Perhaps they went to jail – my recall is hazy. I was left with this abused tooth, crippled forever.

I’ve got crappy teeth, overall. Not only did I grow up before fluoridation, but I also moved many times, forcing me to switch from dentist to dentist, each one of whom hated the work of the previous ones. The filling material was out of date, said one. That crown was old-fashioned, said another. Each country used different technologies. Every individual dentist worked with a frequently unwarranted confidence.

This tooth has been nothing but trouble, but right before my recent trip abroad, Dr. Lumin took another x-ray. “The bones around and under the tooth are gone. If you have an implant – a very expensive affair – you may have to have your sinus cavity moved because the bone is gone and the cavity is right there.”

I can’t picture this. I can’t fathom this. I can’t bear the injustice of my face, my food, my sustenance, my chopping implements being at risk because of a scam artist who needlessly butchered me. “Why didn’t she claim to do work she didn’t really do and demand the same money?” my dentist asked. “Why did she do harm?”

It is like a metaphor for our financial lives. We have worked hard, saved hard, and been ripped off by capitalism, by capitalists. Now they want our social security, our old-age health care, our parks and our libraries. Isn’t our money enough? Must they also do harm?