Category: Medicine

Ways of Making Progress

personby Nancy Jane Moore
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I am not one of those people who pines for the way things used to be.

I mean, I grew up before there was a vaccine for measles and related diseases, which means that I had every version of measles possible regularly from the time I was five to the time I was ten.

I am fortunate that I had no lasting effects from those bouts, but it wouldn’t have been a bad thing to have missed out on measles.

So I’m a huge fan of vaccines and of other treatments and preventative measures for contagious disease. (I can rant about this at length, and have, but that’s not my goal in this post.)

In general, I’m in favor of many of the changes that have occurred in my lifetime, the mechanical and the digital as well as the medical. For example, as soon as I learned to type, I began writing on a typewriter.

I jumped to correcting typewriters as soon as I could afford one and I got my first computer in 1983 primarily as a writing device.

I also love the communication options. Email is great. Texting is great. Having a phone with you so you can coordinate meeting up in person is fantastic.

What I don’t love are the constant changes and updates. While security updates are important and some changes do provide an improved product, there are way more updates than need to happen.

And of course, if you don’t want to change all those things, sooner or later your computer won’t be able to use the tools it needs.

Here’s the other problem — and it might be the one that bugs me the most — these changes are sent along willy-nilly, with no regard to your reasons for using the device or what you might be doing at the time.

It’s not like you get a message — email would work for this nicely — that says these updates are available and recommended and here is where you go to get them when you’ve set aside some time for tech maintenance. Nor is it like you get a choice when, say, you don’t really want to change your word processing program.

No, they assume that the most important thing in your life is tech maintenance and interrupt whatever you’re doing, when in fact the most important things are the projects that you’re using the tech devices to do.

Writing, analyzing data, meeting people via Zoom — those are the important things, not keeping up the computer. Continue reading “Ways of Making Progress”…

Prophets and their Gifts

personby Gillian Polack
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Right now, a lot of my research is about food. Not recipes, nor food history, but how food and foodways creep into fiction. It’ll be a long time before I have research results that I’m willing to share. Right now, I change my mind from day to day as I discover new things. Still, it’s not at all fair to leave you out of my foodways entirely, so I’m going to share with you an old favourite of mine.

In 1552, two little books appeared in the French marketplace. In my perfect world, I would own an original copy of each, but they’re rare and the author is so famous that any copies that appeared would be snapped up for an impossible sum. I own a translation of the books, into English. I could read the original (historians have some handy language tools) but haven’t ever found a modern edition. I was in France in 1995 and found the English translation there. It’s not a big book, even though it rudely fits two old books into one.

Who is this well-known author? Michel Nostradamus, who is more known as a prophet and as a physician than as a cook. Whenever I’ve encountered people who get excited when they hear his name it’s because they want to argue about prophecy. Right now, though, his background as a plague doctor is more appropriate. He was one of the best known and possibly one of the most competent plague doctors in sixteenth century France.

I considered this when I was in the emergency department of the medical side of the university at Montpellier, for he studied there and I had a mysterious disease. I didn’t have plague. But I dreamed of my favourite recipe from Nostradamus’ cookbook as I rested after the appointment and slowly recovered from what turned out to be the side effects of being bitten by a tick. The doctor laughed merrily with his assistant, when they worked out I was Australian and yet had been infected by something in England. They looked up Australia on the computer and noted all the dangerous spiders here and all the snakes and then said “And she went to England for this. York, in the rain.” The actual diagnosis took maybe a minute, and they wrote out prescriptions and descriptions for treatment when they’d finished laughing. At that precise moment I wished I had less French because I could understand every joke they made at my expense.

Nostradamus’ quince recipe was my safe hiding place, I think.

I was in Montpellier researching Langue[dot]doc 1305, but I didn’t call on that incident at all for it. The illness meant I only had a few hours of research a day, because I really wasn’t that well.

I managed to complete all my work thanks to the kind help of people at desks. Two were the senior curators of museums, masquerading as sellers-of-tickets. I asked each of them where I could go in their museum to answer a couple of questions I had. We chatted a minute and they decided to talk me through everything I needed. Two hours, in each case, with people who knew more about the precise material I needed than were in any book. One also sold me a hard-to-find book I desperately needed, so I read that during my many hours of enforced rest.

Hearing the medical jokes at my expense was the downside of having enough French, but being able to talk the Middle Ages with experts was definitely the upside. It might also have helped that I knew a fair amount already: I was asking as an SF writer, but had a PhD in Medieval History backing it.

The third desk person was at the tourist office in the town I was setting the novel in. She had copies of unusual material hiding behind the desk and brought them out for me. In return, I told her how to make Nostradamus’ version of quince jelly.

I wish I had been able to go back one more time after I had digested all that material, because there are some questions I really wanted more answers to. I live on the other side of the world, and a return visit wasn’t possible. Still, Nostradamus and his recipes have an indelible link with Langue[dot]doc 1305.

I didn’t put even a single recipe for quince jelly in the novel. I regard this as neglectful, but I can tell you now, even my mother thinks that he had a very fine recipe. She tested it, some years back.

Memoir, Cancer, And Tent Camping: My Friend Connie

personby Deborah J. Ross
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 When a friend or family member is diagnosed with cancer, the effects ripple through the community. If we and our friend are relatively young, we may feel shock but also a sense of insulation. We have not yet begun to consider our own mortality, or the likelihood of losing our peers to accident or one disease or another. It hasn’t happened to us yet and the odds are still in our favor, particularly if we don’t smoke or drive drunk, we exercise and eat many leafy green vegetables. As the years and the decades go by, most of us will see an increase in morbidity if not mortality in our friends. They – and we – may develop osteoarthritis or Type 2 diabetes, high blood pressure, high cholesterol, all those common ailments of aging.

Some of us will get Covid-19. Some of us will get cancer.

When my best friend, Bonnie, was diagnosed with ovarian cancer, she was the closest friend I had who had cancer. Since then, other friends have been diagnosed and some have died; Bonnie died in 2013 (peacefully, at home). One of the things Bonnie did way back when was find support groups for women with cancer. Maybe it’s a holdover from the consciousness-raising groups of the 1970s, but it’s practically a reflex: whatever is going on in your life, you grab a bunch of women to talk it through. Do men do this, too? If so, it’s a secret from me.

It turned out that a cluster of women who were at college with us at the same time and who still lived in the area wandered through these groups at one time or another, or were otherwise associated with this community. Some have also died, some weren’t doing too well the last I heard, and some are thriving. One of those I lost was my friend, Constance Emerson Crooker.

Connie and I weren’t close in college, but it was a small school and everybody pretty much knew one another in passing. She wasn’t an avid folk dancer or a Biology major like me, but she and Bonnie stayed in touch so I’d hear about her from time to time. Connie was one of those who stepped up to the plate in Bonnie’s final weeks, and I was not only grateful for the extra and very competent pair of hands but for the chance to get to know her better.

Connie was a long-term melanoma survivor, a “late-stage cancer patient,” and made no bones about being one of the lucky ones.

One of the things Connie did was to go tent camping across America. Another thing was to write about it and her cancer. I slowly read and savored her memoir, MelanomaMama: On Life, Death, and Tent Camping. Tent camping does not rank high on my list of favorite things to do. I didn’t grow up camping, and I’m poor at it at best. But as I wended my way through her breezy story-telling, I realized it didn’t matter whether it was tent camping or ice skating or tango dancing (which Bonnie did, clear through the week she went on hospice) or anything else that gives us intense joy.

William Blake wrote that if a fool would persist in his folly, he will become wise. I think that if we’re blessed to have enough time and reflection we can move through the shock and terror and sheer awfulness to some other place, one of “sucking the juicy joy out of life.” Which is why Connie’s tent camping spoke to me and I’m grateful she wrote her book.

When something awful happens to us or when we at last glimpse it in the rear-view mirror, many of us want to write about it. If we’re fiction writers, we use our imaginations to spin out stories in our preferred genre. A huge weight, a pressure of all the intense experience, the fear, the relief, the unhealed and oozing wounds, cries out for us to make sense of the whole thing. That’s one of the things that fiction does, and often it does it much better than straight memoir narrative. Fiction requires emotional coherence, at least genre fiction does. I make no promises about literary or experimental stuff. We think, If I could just nail this down in a story, it would make sense. I understand that longing, that temptation, and at the same time, in my own life, I’ve had the good fortune to pay attention to my gut feeling that I wasn’t ready. Maybe I’ll never be ready to “tell my story.”

But Connie was and she did, with wit and the ferocious clear-sightedness of one who knows she has been reprieved and what it has cost her. Some parts are travelog, some parts are survivalog, some are the observations of an intelligent, thoughtful person who has had a long time to decide how she wants to live each day. I couldn’t read very much of it at a time; it was too “chewy,” too emotionally dense. I needed to reflect on what she shared and what it meant in my own life.

In Connie’s writing, I recognized something quite different from the impulse to tell our story to make sense out it. It was the even more powerful need to take what we have suffered and have it make a difference. Have our lives make a difference.

“Hey world,” she seems to be saying, “I was here. Me, the only Connie there is or will ever be.”

 

“So now, I’m back to scans every three months. Watch and wait. Watch and wait. Wait for the pink and turquoise sneaker to drop. But I keep enjoying my miraculous recovery.

“When I say miraculous, I don’t mean a conventional miracle. … It’s miraculous that a Monarch butterfly can wing its way from Canada to one small patch of breeding ground on a Michoacan hillside. It’s miraculous that a black hole’s sucking gravity can pull everything, including light into is gaping maw. It’s miraculous that there are billions of stars in our galaxy and billions of galaxies in our universe…

“And I’m still here, gazing with wonder at it all.”

 

And sharing that wonder with us. Thanks, Connie, wherever you are tent-camping now.

Transgender and gender diverse teens: How to talk to and support them

personby Deborah J. Ross
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Transgender and gender diverse youth have become more visible than ever. How does transgender history inform us about where society is at in the United States?

Jules Gill-Peterson: A lot of the rhetoric around [trans] kids frames them as totally new – most people are getting to know that there are trans youth for the first time. The visibility that we’re dealing with today is pretty unprecedented. But that doesn’t mean [transgender] people themselves haven’t existed before.

One of the challenges that anyone who’s trans faces is coming to an understanding of yourself in a culture that fundamentally doesn’t recognize that you exist. One of the most remarkable things about trans youth is that they’re able to stand up in this world that we’ve created, that gives them no reason to know who they are, and say, “Hey, actually, I know something about myself that none of the adults in my life know.”

I think history can be a really powerful grounding force to give young people a sense of lineage. It’s not like you look back in time and you see yourself reflected, by any means. But I think it can be profoundly reassuring, in a moment of not just political backlash but the general isolation that trans people face in a cis-normative society, to be able to [see] that you’re not the first person to ever go through this. [I think] that is just kind of a powerful message and one that I certainly subscribe to as an adult too, but I can imagine it’s especially important for young people.

 

What does “cis” mean and where does it come from?

Jules Gill-Peterson: This is actually a term from chemistry. It’s a prefix that you can put in front of words. So is the word “trans.” Trans as a prefix means across – it’s the spatial metaphor moving across something. Cis means on the same side of. At some point on the internet, people started using that word; they were looking for a word to distinguish between people who are trans and people who are not. Cisgendered came to mean that your gender identity matches what was assigned at birth. That being said, it’s not a totally kind of innocent or uncomplicated term. I’m not sure how helpful it is to think of cisgender as something that people need to own up to, for example, in a pronoun circle (when people introduce themselves by name and by the pronouns they prefer).

I think often the pressure for people to [identify] as cis doesn’t make any sense, either. It’s like, well, what makes you cisgender? Did you really go through that long process of deciding if your gender matched what’s on your birth certificate, like trans people have to deal with? I tend to use the word cis in my work to describe large historical structures that created that very obligation in the first place.

Kacie Kidd: To build off that, we as a people have a tendency to put people in boxes. And I’m sure that many of us have had the experience of not neatly fitting into a box that society ascribed to us. And I think that’s something that we all can connect to, and relate to, and understand that our job of putting people in boxes is not helpful, right? And there is no binary for most things, if not all things, and I think our realization of that helps to understand the broader [situation].

What are binders and gender-affirming procedures, and is there a right age for them?

Kacie Kidd: A binder is a garment that constricts chest tissue and has a variety of uses; elite athletes often use similar kinds of products. But [binders] can help make someone feel more in line with who they are and can help them kind of navigate the world. But the answer to your question is no, there isn’t a perfect age. But these are long, thoughtful conversations and considerations.

Jules Gill-Peterson: As a historian of medicine, one of the really interesting stories that I pulled in my book, Histories of the Transgender Child, for example, is that gender affirming medicine originated long before it was seen as gender affirming. The medical techniques used now came out of studying trans and intersex people and under really horrific, barbaric, torturous conditions. But the goal of that research was actually not to help intersex and trans people – it was to force them to appear more “normal,” but actually developed means to medically intervene into human sex and gender.

One of the interesting truths here is that there really isn’t that much of a meaningful difference. The only difference between trans medicine and non-trans medicine is who gets stigmatized for it. Who has to go get a psychiatric letter of evaluation, who has trouble getting insurance compensation? [For example,] who uses the most hormones in this country? Cisgender women and cisgender men. They just don’t have to ask for it as much. Other kinds of surgeries that are exactly the same as gender affirming surgeries are called cosmetic surgeries.

I worry about my trans daughter having regrets in the future, when going back won’t be an option.

Jules Gill-Peterson: I understand the anxiety, but I want to make the case that [regret] is a red herring that’s been planted in our mind. I think the concept of regret is often tied to this idea of “de-transitioning,” the idea that you can transition and then un-transition, which is not a very good way of thinking about it. When people do choose to de-transition, especially trans women, it is due to overwhelming social pressure discrimination and loss of social support people.

People de-transition when they lose their jobs, when their partners abandon them, when their families won’t speak to them, when they’re in dire financial straits, when they’re experiencing street harassment and criminalization, and when they don’t have the material resources they need to live. Those are the most concerning regrets.

Our children’s genders aren’t something that belong to us, right? And so our job is to support them in life and try to avoid those regrets, or to avoid the regret of going through puberty you didn’t want to go through, or having to, you know, spend years pretending to be someone you [are not]. I think those are things we should feel regretful for in society.

 

The Conversation U.S. on Oct. 21, 2021, hosted contributors Jules Gill-Peterson, an associate professor of history at Johns Hopkins University, and Dr. Kacie Kidd, medical director of the pediatric Gender and Sexual Development Clinic at West Virginia University Medicine Children’s Hospital, in a webinar titled “Transgender and gender-diverse teens more visible than ever: Who they are, what they need and how to talk about sensitive issues.”

 

This article first appeared in The Conversation and is reprinted under Creative Commons license.

A COVID loss: anger, grief, and healing

personby Deborah J. Ross
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The COVID-19 pandemic has been raging for many months now, marked from the onset by lies about the disease, its origins, its treatment, and its prevention. No aspect of the pandemic has been free from controversy and misinformation. In the middle of flame wars and whack-a-mole efforts to squelch anti-vaccine, anti-mask internet sites lies the confusion and grief of those who have lost loved ones to this disease (over 700,000 in the US and 4,800,000 worldwide).

 

Like many others who believe in science, I was first puzzled and then appalled by the cloud of outright falsehoods that grew up around vaccination. Refusing the vaccines based on illogical and unfounded internet rumors struck me as downright suicidal. Equally troubling were the friends who bought into those lies.

One was a long-time, very dear friend who had supported me through dark times and whom I had supported in turn. Early in 2020, L told me that she didn’t trust the mRNA vaccines and besides, she thought she’d had a mild case of COVID-19, although she was never tested. But she was diligently wearing a mask at work, and it was clear that further discussion would only be confrontational, so I backed off. For the next year, all appeared to be going well. Then she moved to another part of the country, one with low vaccination and mask-wearing rates. I heard from her while she was waiting at an urgent care center for a persistent cough. Her COVID-19 test was positive. A few days later, she was admitted to the ICU. We talked and texted frequently as her condition deteriorated. After a week and a half, she was placed on a ventilator. She died two weeks later. Her last text to me was, “I love you.”

During her hospitalization, I felt not only growing concern for her, but anger. Anger at so many things. After her diagnosis, I wanted to scream at her, “How could you fall for that conspiracy nonsense?” Then my fury spread to everyone who spread those lies, manipulated statistics, and otherwise terrified people into refusing the one thing proven to save their lives. Anger at the last administration and the former president, who failed to take action at the onset of the pandemic. Anger at the officials in her state for their lax measures and cavalier attitudes to the virus. Anger at everyone who touted ineffective remedies in order to make a profit. And most of all, guilt that I hadn’t pressed the vaccine issue harder and been persuasive enough to save my friend’s life.

Grief mixed with anger and guilt isn’t logical. Nor is it simple.

While my friend was still alive, I realized how unhelpful it would be to be angry with her during her illness. The time to discuss vaccines was after the crisis, not when she was fighting to breathe. Armed with these thoughts, I did my best to work through this particular piece of anger or at least put a dent in it. I also talked myself through my part in what happened and acknowledge that there was nothing I could have done. The choices were hers, as were the consequences. But I believe in harm reduction. The price of making stupid decisions should not be death, although with COVID-19 it all too often is. I hoped that eventually my friend would have come around to getting vaccinated, but she ran out of time. Now I’m just sad.

My opinion of the anti-vaxxers hasn’t budged. I’m angrier and less patient with them than I was before. I still want to blast them with their responsibility for the death of my friend and so many others. I don’t go all-out on this, however. I have more important emotional work to do, mourning the loss of my friend. Continue reading “A COVID loss: anger, grief, and healing”…

Fight the (Sedative) Power

personby Madeleine Robins
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The Author, aged 1. Note cheerful gape.

Until I was about five, I could not breathe through my nose. Literally. If I tried to hum I would run out of air and have to gulp for breath before I turned blue and fell over. I had that expression common to the adenoidally-impaired: a sort of gape that might have been cute on a five year old, but makes you look stupid at 6. My adenoids and tonsils were so persistently swollen that the only thing to do was to yank them.

Me being, even then, me, I was hugely excited about this. Going to the hospital and staying over night. An operation! Whee! So the day of the event I was delivered to the hospital first thing in the morning, checked in and dressed in hospital togs, and given a sedative by suppository (I was not thrilled by this–no one had said anything about having things shoved up my butt, but I was an easy-going child, and it was all so exciting!).

It was so exciting, in fact, that when the sedative began to do its job, I fought it off.  Continue reading “Fight the (Sedative) Power”…