It Takes a Village, and a Tribe: Women Help Women Locally, Globally

The idea that “it takes a village” to raise children and maintain a healthy community has resonated for women all over the world ever since the 1975-85 UN Decade for Women brought women together from every corner of the world. “Women hold up half the sky,” became another mantra heard often at the 1995 review of the Decade known as the Fourth World Conference on Women.

I thought about both expressions, reminders of women’s solidarity, strength, survival skills and commitment to social change and human rights, when I worked with pregnant refugee women in Greece recently.

The experience grew out of my communication with a woman in Montreal who runs a small program that supports pregnant and postpartum women in the city of Thessaloniki and at a refugee camp an hour north of there. Our conversation soon grew into an international dialogue in which a network of women who shared the goal of helping refugees in Greece spoke to each other.  Soon What’s App text messages and emails were flying fast and furious between Canada, Greece, France, the UK and the US. It was women’s networking at its best and it resulted in my being able, along with a friend from France, to offer personal and practical support to women from Syria and various African countries whose stories of seeking refuge would break your heart.

Part of what made this experience interesting and illuminating is that outside of my French physician friend who joined me in Greece, I didn’t know any of these women, although I met one of them in Thessaloniki briefly at the airport.  But all of us were connected to refugee women for the same reason: We shared the goal – and the drive – to help women whose lives were deeply challenging. And so we became a self-identified “village” connected by our cell phones and our commitment to help.

But we were more than a village. We were also a tribe, a group of like-minded people, women in this case, with a common goal and interest. And we were all feminists, who like other social activists, often feel the need to fill an identified vacuum.  We didn’t wait for permission to act or stand by until we were chosen for the task. We just saw a need and were determined to be useful.

I understood this concept of tribal identity and action more clearly when, soon after my return from Greece, I heard Seth Godin, an author and entrepreneur, talk about the importance of “tribes” on NPR’s Ted Radio Hour. He illuminated what he called “disruptive leadership,” which he said begins with a deep understanding of a situation that may not resonate for others. It’s a situation that calls for action and “positive disruption.”

The situation for women refugees in Greece, particularly if they are actively childbearing while living in a refugee camp or isolated apartment, certainly called us to action. These are women exhausted by their long, strenuous and often dangerous journeys. The have been forced to abandon their countries, their extended families, their homes. They often live in subhuman conditions for months, even years. (Many have endured living in tents surrounded by stagnant water through cold winters.) They have no money except for small monthly allowances provided by a United Nations agency that does nothing to address their isolation, boredom and despair. Sometimes their husbands or partners are abusive or absent. It is a huge challenge to survive and to keep their children safe in a place where they have no friends and don’t speak the language. In other words, they live in a huge vacuum. And that is why my tribe goes to Greece.

We have these attributes, identified by Seth Godin in disruptive leaders, in common: We challenge the status quo. We connect people. We commit to our common cause, and our tribe. We share a generous curiosity about others. And together we build a culture where we are safe and understood so that we can do the work of filling the vacuum.

Godin’s thinking gave me a framework – an AHA Moment – in which to contemplate the work I and other women were doing in Greece. The women I met doing the work reminded me of the tribal nature of such connection, which I have personally experienced whether I am with other feminists, other social activists, or other Jewish people.  We “get” each other. We have common histories and experiences that don’t need to be explained. We are safe together and we find joy in what binds us.

The women refugees in Greece reminded me how blessed I am to have various tribes. This particular tribe enabled me to enter a painful vacuum, to fill it to some degree with much needed practical help, emotional support, and in many cases, deep affection.

I wouldn’t have missed being positively disruptive for anything in the world.

Elayne Clift, a doula, has worked internationally in maternal and child health. She writes from Saxtons River, Vt. Her latest book, an anthology, is TAKE CARE: Tales, Tips and Love from Women Caregivers (David Braugher Books, 2017)

 

 

Using “citizen scientists” and crowdsourcing to spur medical progress

Sharon Terry

Preparing for this TEDMED talk gave me a wonderful occasion to pause and reflect.  With the release of the talk I have the space to give more color to experiences and ideas I shared there.

When my husband Pat and I were faced with the pseudoxanthoma elasticum (PXE) diagnosis of our children, we were shocked. The linear, idyllic, progression of life that we expected was derailed. Instead, a surreal unfolding ensued. Day by day we realized that we couldn’t go backwards to BEFORE. We also realized that we would have to go ahead into a space we never knew existed. This foray into biomedical research was beyond groping in the dark for a light switch to illuminate our world; it was like having to find the source of electricity to power us through.

Pat and I had no reference points, no landmarks, no understanding of genes, multi-systemic disease, or the fact that many conditions simply do not have treatments.  We were attempting to plot solutions using tools we had never seen nor heard of before. As Pat said, “We didn’t know a gene from a hubcap”.

Because we were neophytes, we had beginner’s mind and heart. For us, there was immense space around each of the problems we encountered and many opportunities for considering novel solutions.

It was that spaciousness that led us to build a registry and BioBank as our first endeavor. We could see something incredibly obvious, but seemingly unimportant to the research community. We could see that the intense competition between labs to build biospecimen and clinical data collections was thwarting discovery or at least decreasing its speed.

In the talk, I remark that for us the solution to the problem of herding cats – getting scientists to work together – was to move the food. If we aggregated and managed the blood, tissue, and clinical data, the cats would follow. This turned out to be quite true. Building these resources in 1995, opened the field. There was greater opportunity for everyone to work with more clues and to accelerate the quest to understand this premature aging disease.

IMG_3513

“Can we wash your test tubes?”, we asked post docs at Harvard. We did not know that washing test tubes wasn’t really needed, but we did learn to extract DNA from blood, run and score gels, and enter data into excel spreadsheets in the search for the gene. We were very lucky that our neighbor Martha volunteered to watch the kids several nights a week. We would tuck them in, make sure Martha had what she needed, and drive 30 minutes from the suburb of Sharon, MA to Boston. There, from 8 PM to 2 AM, we would perform the rather monotonous activities required to discover the gene. Some of the most creative aspects were trying to pinpoint exactly which Staedtler marker wrote on the film the best, and which kind of light box made the blurry dark and faint lines on the gel more obvious. The most magical part was when Pat put the data into the spreadsheet and saw the locus emerge. His dyslexia allowed him to see patterns the rest of us needed analysis to see.

I remember very well convening our consortium of researchers and discussing the locus – the place likely to harbor the gene responsible for PXE. There were five genes in the locus, which one was it? The young researchers wanted to work on elucidating the genes that no one knew about, rather than the already known ones. We were once again faced with an important opportunity to refocus our researchers. We asked the team if they could put finding the responsible gene above characterizing the unknown genes. The answer, for the most part, was yes and off we went through each of the genes until the magic of the DNA on one family definitively identified ABCC6 as the culprit. That was a happy day. To simplify the filing, Pat and I decided that for the gene patent application, I would be a co-inventor of the gene, along with our colleagues in Hawaii. He could have also been listed, but we thought we were pushing the envelope enough listing one lay inventor.

Filing the gene patent and having it awarded was another point of consternation in the research arena. There were many ethicists who thought it was immoral to patent a gene. For us, it was supremely important that we have a mechanism for ensuring the gene would be freely available for research. To do that we had to be the gene’s stewards. I assigned my rights to the foundation and we could keep our institutional partner from charging high fees for licensing its use. We charged very minimal fees, bringing in only about $100 in licensing fees overall. It’s a good thing that the wonderful pro bono lawyers from K&L Gates did the filings.

As the millennium was flirting with Y2K, we loved ABCC6 more than any other alpha-numeric combo. Our neighbors in Sharon, MA rallied to our cause: served on our board, helped us run wine and beer tastings, did a walkathon and more. We walked into the PXE research world with a naïveté that gave us space to transform the landscape around us, but in that few short years, a great deal had transpired.

From the start, we believed, and never questioned, that the lived experience of people affected by PXE, and their loved ones, was the only reference point. We saw the individual as expert in PXE, not those who by their training or credentials claimed to be experts. A lawyer ethicist slammed us in a journal editorial declaring that “the Terrys will thwart research because of their conflict of interest”; stating that the Terrys’ love for their children will get in the way of letting the ‘real experts’ do their thing. We were stunned that someone would put forward such a hypothesis without evidence and dismiss those who live with the condition day to day as true authorities. It was then that we began to eschew the medical model and work to scale and expand our tools for the largest body of experts: people who have a direct experience of the disease.

I believe that over these years our propensity to follow what emerges, as it emerges, has served our quest well. We work now to retain our beginner’s mind, even as we continue to be shocked by the inability of researchers and institutions to see beyond their own interests, which often are linked to securing funding, getting published, and promoted. We continue to seek ways to show the research community the value of true partnership with individuals, families, and communities. It would be unconscionable in any other industry to leave out the parties who will be the biggest customer of the product. We continue to look for ways to find that tipping point where it will make sense to include the true experts. We welcome all in our quest.

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Mother and Daughter Dynamic Duo: Fighting For Women’s Health Equality

This essay was first published on MsMagazine.com.

For decades, my mom and I have been a dynamic duo using the arts to creatively fight for women’s rights. And now we are using the arts to fight for my life.

In the ’60-70s, during the burgeoning “Women’s Liberation Movement,” my mother, Bobbi Ausubel, co-wrote America’s first feminist play, How to Make a Woman. After each performance, cutting edge and ruckus consciousness raising groups helped women and men grapple with just how much gender roles dictated their lives.

As a little girl, I couldn’t care less. I played with my toys under the adults’ chairs, impatiently waiting for my parents so we could finally go home. Such was the life of a child of early feminist leaders.

Yet the women’s empowerment message sank in. As an adult, I published a collection of true tales of women’s bold deeds and brazen acts. Then, my mother and I jointly adapted my book for the stage, which resulted in over 1000 events — theatrical productions and open mikes — where audiences shared their own real-life stories of courage.

But now my mom and I have a new focus: we are fighting for me to get my life back. And once again our work involves a cutting-edge women’s issue.

I have ME (Myalgic Encephalomyelitis), a devastating, chronic neuro-immune disease that disables up to 2.5 million Americans, 17-20 million worldwide, a majority of whom are women. The disease is so debilitating, it often leaves me too exhausted to do basic tasks, such as cook a meal. And it leaves my brain so muddled and foggy, I often have to pause mid-sentence to remember what I’m talking about.

ME is commonly known as Chronic Fatigue Syndrome, a belittling name that does not reflect the true devastation of the disease and is now rejected by patients and disease experts alike. There is no cure and no FDA-approved treatment for this disease in which 75-85% of patients are women. It receives little attention and barely any research funding.

Lack of research, coupled with negative stereotypes of either the lazy lady patient or the hysterical woman, has translated to lack of help and treatment for people with ME — both men and women patients. It is not an understatement to say that the federal government neglects ME: For the past 30 years, they have given ME only about $6 million per year in research funding. That’s the same as male pattern baldness, which does not leave anyone bedridden for years.

One quarter of ME patients are homebound or bedridden; 50-75% are unemployed because they are too sick to work. Many, like me, have spent decades tethered to our beds, too weak to function, with little or no medical or governmental assistance. Some people with ME are too weak to feed themselves.

The prestigious National Academy of Medicine (formally the Institute of Medicine), stated in 2015 that ME is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients. They said ME patients are more disabled than other highly disabling diseases, including MS, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

Yet about 90% of people with ME are undiagnosed or mis-diagnosed because few doctors know enough to diagnose and treat the disease. A majority of doctors are unaware or mis-informed — after all, ME is not taught in medical schools and the CDC disseminates misinformation, such as that exercise will help us (in fact, it hurts us). Even with recent major scientific advances regarding ME, the lack of federal funding for research means highly respected scientists must rely on crowd-funding.

No cure, no treatments, no research funding. It is understandable patients struggle to hold on to hope.

Now, with me bedridden much of the time, my mom and I spend our days organizing demonstrations in front of the US Department of Health and Human Services (actually, this is not unlike putting on a theatrical production), staging our women’s empowerment play as fundraisers for ME research organizations and cutting edge advocacy groups, lobbying Congress with still other advocacy groups and most recently securing State and City Proclamations for ME Awareness Day, held each year on May 12th.

Rivka

Needless to say, in our dynamic duo my mom is more like Batman and I’m more like Robin: She is doing most of the heavy lifting and I’m supporting her as we fight for the rights of people with ME. But we are certainly a team. We want hope and healthcare equality to be granted to these disabled yet neglected Americans. And you should, too. After all, most of them are your mothers, daughters, sisters and women friends.

Rivka Solomon (@RivkaTweets) is a writer in Massachusetts. She is working on a book about her 27 years with ME.

Celiac Disease: A Serious, Life-Changing Condition

Glenna Crooks

I met Paul Graham courtesy of one of his essays.  Then, we talked by phone and I read – no devoured – his book, In Memory of Bread: A Memoir. Pardon the pun. Paul is a professor of English Department at St. Lawrence University in Canton, NY and on July 1 becomes Department Chair. He focuses on fiction and non-fiction creative writing and lives with his wife, Bec and their German shepherds.

Paul, your book is the best description I’ve read about the challenges of being diagnosed with celiac. Can you summarize what happened? Given your experience, what recommendations would you have for clinicians? Should celiac be suspected more than it is? 

My experience was unusual for people with celiac disease. There’s typically a long path to a diagnosis—as long as six years in the US, which is a long time to be suffering and wondering what’s wrong. My onset was actually pretty sudden. Over the holidays in 2012, I came down with what I thought was a stomach bug. My doctor put me on Cipro, and I took that for a week and still felt awful. Then he put me on another antibiotic, Bactrim, and when that didn’t work, Flagyl.

I was allergic to Flagyl and wound up in the ER, where bloodwork showed that I was severely anemic, though they didn’t know why. They sent me home with iron supplements and basically said, “Good luck, buddy.” No one suspected celiac yet, so I kept eating gluten in the form of things I thought would be gentle on my gut, like toast and pasta. I had no idea I was actually poisoning myself.

After three weeks of this, I ended up in the hospital to stay, because of a G.I. bleed. This was the first time anyone mentioned celiac. The G.I. took one look at me and said, “Hey, I think you have celiac disease; either that or Crohn’s.” I was in such bad shape that I needed blood transfusions before he would do an endoscopy and colonoscopy.

Once I received the biopsy results a week or so later—my intestinal microvilli were badly compromised, and the doctor staged my celiac disease between Marsh III a. and Marsh III b.—everything made perfect sense. I went about making the tough dietary changes I had to make, and within six months, I’d gained back most of the weight I’d lost.

Looking back, I actually see signs of celiac disease all the way back into my 20s. A dermatologist misdiagnosed me with eczema; it was actually dermatitis herpetiformis, which is one of the early harbingers of celiac disease. I had stomach flu-like symptoms usually once a year, when things got stressful. As far as I know, I’m the first in my family to be diagnosed, even though celiac is genetic.

Obviously, my doctors completely whiffed. This despite the fact that my symptoms were textbook. But then, 75 % who have celiac are either misdiagnosed or undiagnosed. So, if you’re a clinician who sees more than a hundred patients in a week, the odds are that some of them may have celiac. In fact, 50% of people in America are at genetic risk of celiac because they carry one of the two genes associated with the condition. The takeaway for both my doctor and I—I interviewed him for the book—is that sometimes the cause is hiding in plain sight. Maybe an elimination diet should be a standard suggestion when G.I. problems are recurrent or chronic. I wish he’d questioned me long and hard about my diet—not just what I was eating, but how much.

Paul Graham

Do you think celiac is a serious disease?

I do. Definitely. Among those who don’t understand it, there can be a tendency to misidentify celiac as an allergy, or, even worse, just a trendy dietary practice grounded in a belief that gluten is bad for you. And it can be deceptive, too, because once a person fully recovers from the damage of celiac disease—intestinal biopsy comes back normal, blood panels are all good—they don’t look like they have a disease. But celiac never goes away, you never outgrow it, and the only cure is to not ingest any gluten.

It’s when celiac disease is uncontrolled, either because the person is undiagnosed or misdiagnosed, or noncompliant, or can’t avoid gluten because products are mislabeled, that it’s very serious. When I was at my sickest, my body was literally starving. My gut was absorbing little to no nutrients. I had symptoms you typically see in an anorexic, including edema in my lower legs and feet. My first night in the hospital, I awoke at two in the morning to find four nurses gathered around my bed. Apparently, my heart rate had dropped to 37, setting off an alarm in the ICU (I was on telemetry). I remember telling them that I was a runner, that I was fit, and that my heart rate was always low, which must have struck them as funny.

Sometimes I remember the things I was doing in a state like that—driving, walking my dog, splitting wood—all because I stubbornly refused to give up my routine even though I felt sick, and I think it’s a miracle that I didn’t have an accident that injured me on top of what the disease was doing to my gut.

We’re disruptive on this site, and not exclusively women because we do have a Man of the Month feature, but you’re disrupting the celiac space, right? I don’t know any man so willing to talk about it.

I hear from women in response to my writing and research far more than I hear from men, but my hope in writing the book is to reach more men, because it’s clear that men are also among the many who are undiagnosed or misdiagnosed. I also hope that writing about my experience will inspire more men to get tested and, if they need to, adhere better to a gluten-free diet. I don’t have any hard data on whether dietary compliance rates are lower among men, but it wouldn’t surprise me if they are.

I think that partly because of that “bro code,” if you know what I mean. It seems to me that a guy with celiac disease may be more likely to go out with his buddies, drink his beer, eat his pizza, and say, “Damn the torpedoes and full speed ahead.” For instance, it’s still difficult for me to gather with my friends at the pub to watch a baseball game.

Beyond the gender element, I hope I’m disrupting our dietary response to the disease. There are some good GF products out there, but there are also some really bad ones, and they’re bad for you, too. GF versions often have more fat, sugar, and salt to compensate for the missing gluten. I wish that we could talk less about GF imitations and more about whole foods. You’re overhauling your diet anyway, so why not take it as an opportunity to learn to cook, expand your repertoire, try new foods? The GF industry is very profitable, and some of those profits go back to research and advocacy organizations, so the market is complicated.

In your book is a compelling description of the history and role of wheat in so many world cultures, and the way that bread and “liquid bread,” which the rest of us call beer, is a force that binds us together. In health care these days, we talk about the “social determinants of health” and know that social connection is a key ingredient in being healthy. How has celiac changed your social life? And, what advice would you have for people whose friends have the condition?

Celiac disease has fundamentally changed the way that I relate to other people—strangers and friends—partly because now I’m sometimes eating different foods than other people, but mostly I have to speak up and talk about my dietary needs in social situations. I have to make clear just how sensitive this disease makes me to cross-contamination. And I have to do this every time food is part of a social situation. It’s essential, and yet at first, I found it very difficult to advocate for myself. Again, I think part of that is gendered behavior, not wanting to be different, or special. But part of it is also just my personality. I had to teach myself to communicate with people in my social circles, and I also had to learn the limits of that communication. You can’t reach everyone, and you can’t have every situation go your way. I go to plenty of work functions, for instance, where there’s nothing for me to eat—or, what’s there is not worth eating. There are only a few restaurants in town where I can safely go out with friends. Traveling is stressful.

On the other hand, my self-advocacy has also rewarded me, because now friends think about me all the time. They cook GF dishes, scrub down their cutting boards, and do everything they can to make me feel welcome. The lesson here is to not go into hiding.

As for advice, I think it helps to practice talking with family members first about the demands a medical condition—any medical condition, really, with celiac or type 1 diabetes or allergies—places on you, and how that condition affects your social experience. Once you get comfortable explaining it to your relatives, it will be easier to talk with friends, co-workers, and acquaintances. Just keep working outward. You need to become a really good reader of the context, the social situation, and use that to figure out how much depth you need to go into, and how firmly you need to advocate for yourself.

I’m curious about the experience of college students on your campus, or other schools you know about. What’s life like for them?

This is, to my knowledge, a pretty big hole in the research right now. I know a few college students with celiac disease, and I know it’s not easy for them. One reason is the social aspect. College is about risk-taking in many different ways—intellectually, socially, athletically—and failure is part of the learning process. The thing is, if you have a condition like celiac disease, and you take a few of the smallest risks to be like everyone else by eating or drinking something you shouldn’t, you’re going to get sick, and that’s going to spiral into your classroom experience. I know because it happens to me. I’ve gotten “glutened,” as they say, and while the GI symptoms are unpleasant enough, the inability to think and concentrate sometimes lasts a week, and I often get sick with a cold or flu right after. The stakes are just higher.

There are also the experiences that so many college students hope to have that are just harder when you bring celiac disease to campus. In the dining hall, you have to be careful and may not have many options, depending upon how supportive they are. If you travel with a sports team, you have to think about food. What if the team bus stops at a pizza place on game day, and there’s nothing for you on the menu? If you go abroad for a semester, how will you negotiate the homestay, the meals out, the language barrier?

Fortunately, many colleges have accommodation offices. They’re getting better at supporting students with celiac disease.

You took us along on your journey as you explored recipes for gluten-free bread and cuisines of other cultures, and one reviewer called you a “scholar of stews and ragouts.” Before your diagnosis, you also made beer and if I recall correctly, despite a search for a good gluten-free beer and attempts to brew one yourself, you’d not yet been satisfied with the quality. It’s been a year since the book was published; have you had any success since?

One of the more inspiring aspects of this disease has been the people I’ve met along the way who are all dedicated to beating the game, so to speak, and making grains like millet, buckwheat, and rice behave like wheat or barley. From a brewer or baker’s perspective, that’s a control of chemistry that borders on alchemy. Maybe even voodoo. There’s a brewery called Ghostfish, in Seattle, which is doing some really exciting things with GF brewing. And there’s a homebrew company with a GF beer kit that I’m going to try.

Where I’ve had the most success, actually, is with homemade cider. I have a friend who has an orchard, and every fall we press the apples by hand with an old-fashioned crank press. Then we add some starter in the form of reduced apple juice and maple syrup. To this, we add our champagne yeast, and we let it ferment. The cider is wonderful, but it’s a real delay of gratification. Whereas you can drink an ale a month after brewing, cider takes about six months to condition. It’s worth the wait, though.

You’re working on a new edition of the book. Can you give us a hint about what new things we’ll find there?

Well, you can’t change too much in a book like this—trade is different from textbook publishing. I want to update some facts and figures, for sure. There is some compelling research about the potential implications of reovirus as a trigger for the disease. Prevalence continues to rise, which is not surprising given that half of the US population has a genetic risk, virtually everyone in the US eats gluten and, as people age, they are more likely to suffer a “trigger event” like an accident or a reovirus experience. It seems worthwhile contemplating just how much of a “pre-existing condition” celiac disease is as the health care debate continues to rage.

In the end, though, this book is about the experience of getting celiac disease, and what that means not just personally, but also historically, gastronomically, and socially. The statistics may change, and new products may make the dietary demands sting a little less, but the meaning of turning your back on 10,000 years of culinary, social and agricultural history doesn’t change.



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