GAYLE: Mindy Fried, your new book Caring for Red tells a story of you and your sister taking care of your 97-old father in the last year of his life in an assisted living facility. Before we talk about your experience caring for your dad, Manny, tell me a little about him. Who was this colorful character? After all, he earned the nickname “Red.” Sounds fiery to me!
MINDY: My father was a person with many lives. As a young man, he was a labor organizer for the United Electrical Workers union where he organized factory workers. That was when industrial labor was still predominantly based in the US, and not in third world countries where labor is cheaper. At some point, he joined the Communist Party. I’m not sure how active he was or for how long, but certainly at that time, being considered a “Communist” was tantamount to being a terrorist in our current political climate. In1954, when I was around 4 years old, he was subpoenaed to testify in front of the House Un-American Activities Committee (HUAC), a very traumatic experience for him, and for my whole family. He was “blacklisted”, meaning that when he applied for jobs, he was turned away. Eventually, he was hired by a Canadian company where he sold life insurance for around 15 years. That’s the kind of work he did through much of my childhood. But he was also writing plays based on his experience as a labor organizer, and he returned to the theatre as an actor, something he had done years before. When I was a teenager in the 1960s, he was subpoenaed by HUAC again. That was tough, but times had changed quite a bit and the ramifications weren’t quite as dire as they were the first time around. He ended up going back to school when he was in his 50s. Really impressive, since he had only one year of college under his belt. He went straight from finishing an undergraduate degree to working on a Ph.D. in English. His final career was as an English professor at SUNY Buffalo State College. You might say that nothing kept this guy down. He was a great role model in that sense.
GAYLE: How did your family survive the impact of the McCarthy period?
MINDY: I grew up with two people who were angry with each other often, but it was quiet anger. That was hard. I was lucky to have a best friend who moved in down the street from me when I was 5 years old, and her family basically adopted me. She liked my house because it was quiet, and I liked hers because it was lively and warm and loving. She became my “non-bio” sister, as we say; we’re still close today. Her parents became surrogate parents, and I am ever-grateful for that. They were just very attentive; my parents were often distracted. It was great to have another family a few doors down the street. That was one way I coped. But as a family, we also believed that my father made the right choices, in how he challenged HUAC, and continued to stand up for his beliefs. Having a sense of doing the right thing goes a long way.
GAYLE: Another name associated with Manny Fried, is “Morrie.” Six years before your father died, he played the character MORRIE in a play called Tuesdays with Morrie. As the story goes, a University graduate visits his former mentor, a sociologist who is slowly dying of a progressive disease. You write that your father inhabited that role fully, and that it helped to bring you closer together. Tell me why.
Well first of all, it was a big deal to play Morrie, not only because it was a great opportunity for my father, but also because he got to perform at the Studio Arena Theater, which had blacklisted him for many years. For me, the other exciting thing about him getting this role was that Morrie was a sociologist in my own department at Brandeis University. I knew Morrie, and the moment that my dad got the part, I saw it as an opportunity for the two of us to connect around his preparation and performance. I introduced him to Gordie Fellman, one of Morrie’s closest friends and colleagues from Brandeis. And I introduced him to a couple of Buddhists and sociologists who called themselves “Monday’s with Morrie”, as opposed to Tuesdays with Morrie (upon which the book and play were based). We also watched the Frontline TV series that Ted Koppel produced about Morrie, where Koppel interviewed him over the period of time as he was dying of ALS. When my dad came to visit me, he would have these meetings, and he would run his lines with me, and he would practice a grapevine dance from the play in my narrow hallway. It was just this really sweet thing that we connected around, and then obviously I always went to see him when he acted, so it was great to see him in the play, and he really did a beautiful job. People are always kind of amazed when they see old people function in any way, but seeing him excel at inhabiting this character – I think it was a really powerful experience for the audience and he pulled it off; he did a great job.
GAYLE: In your book, you describe a father who was loving – someone you felt deeply close with – but also a man who was full of himself. Did you feel resentment about taking care of him in this last year of his life?
MINDY: Well I think that this a really important question because as adult children, many of us have mixed feelings about our parents. The answer is “no”, I didn’t resent him. But it took me many years to understand him, to find equal footing with him, to find my voice with him, since he was a forceful speaker, sometimes controlling, and sometimes discounting of opinions that differed from his. He once told me that if I wasn’t sure about something, just guess, and that 99% of the time I’d be right. I was in my 30s when he gave me this advice, and by then I had his “number” and realized that this was sort of ridiculous. But he actually believed he was right most of the time! That said, I had deep respect for him and for his values and choices in life. He centered my world, for many years. In “exchange theory”, as it applies to families and relationships, the notion is that parents care for their children in one period of time, and later in life, when elder parents need support, children care for their parents. When it came time to care for my father, I did it with all my heart.
GAYLE: How did the father-daughter relationship change as Manny aged?
MINDY: My father and I were very close. Like most people, he was a flawed human being. He made serious choices in his life that impacted our family. But I had a deep respect for him, and we had a lot in common politically. For me, being part of the Women’s Movement in the 70s helped me better understand that despite being a good guy who was committed to social justice, he was pretty “old school”. I got frustrated with what a poor listener he was, and how I often had to fight for “air time” in conversations with him. But I did learn how to argue and debate because of him. I believe he felt I could be anyone or anything I wanted to be. And while he wasn’t comfortable “having or expressing feelings”, he was emotionally raw much of his life. That was one effect of McCarthyism on his life, and I understood that about him. Over the years, I understood enough of who he was to accept his shortcomings and his vulnerabilities and to just kind of let it go and say, “ok, here’s this person in the last bit of his life,” and to really be as fully present for him without losing myself.
GAYLE: You chronicle in your book many attempts, successful and unsuccessful, to find a place for your father to live that would meet his growing care needs AND offer the kind of life that fulfilled him. This was not easy, and sometimes your father was less than helpful. Tell me what worked, and what didn’t?
MINDY: I think one thing that worked was that I put myself in his shoes. For example, when we went and visited this super groovy retirement community that was connected to a college and he said to me, “there is absolutely no way I am going to move in there”. I imagined myself living with people that we met with, and I thought “I couldn’t do that either, this would be kind of horrible”. Not that they were bad people; it just felt foreign. These weren’t people he would choose to be friends with. I think that probably the most important thing as somebody gets older is to respect where they’re coming from. And I think it’s important to start thinking about these issues early on because you know, if you are trying to make a decision when it’s dire, the whole process of decision making is much more rife with emotion. I believe that talking about these things before you are in a crisis really makes a huge difference. And that helped us a lot.
GAYLE: Your father lived in Assisted Living for the final year of his life. Am I correct?
MINDY: Even though the book uses a one-year time frame, it was actually a year and a half that my sister and I cared for our father. It worked really well, until it didn’t. We learned what assisted living was able to provide for him as well as its limitations. Ultimately, in the last few months, he needed round the clock care. But he was able to live and die in his small apartment in assisted living. As an ethnography, Caring for Redprovides a real sense of life in assisted living, the norms and values that drive human interaction, the hierarchy of staff, and the structures that define the experience within this institutional form of care that aims to provide a home-like environment.
GAYLE: Can you describe what Assisted Living is?
MINDY: Well, people think of it as kind of a hybrid health and home service, but in fact it’s really just more home than health oriented. It’s a place to live; there are regular meals; there often are activities; and staff provide services to residents – up to a point. Some assisted living facilities have medical staff; others don’t. We chose a place that had some nursing care, including medical people who delivered medications, and there was actually a doctor, a geriatrician, who came by once a week. But we had to pay for medical care because it was beyond the basic services offered. We ended up supplementing even more services in order to avoid having to send him to a nursing home. But that’s a longer story…
GAYLE: You were also a long-distance caregiver. How did you manage your father’s care from afar?
MINDY: I was lucky that I had a sister to do this with, so between the two of us we shared the caregiving work. We visited every weekend; we talked on the phone all the time; and we were on the phone constantly with caregivers, as well as his friends to help arrange his social life.
GAYLE: What do you hope for your book? How do you hope people will be affected by reading it?
MINDY: I guess if nothing else, I’d like it to contribute to a more open conversation about the trials and tribulations of caregiving work. While Caring for Red includes references to scholarly work on caregiving, I will be lucky if people feel more of a heart connection to the issues, particularly those people who are caring for an elder parent. We all have a range of feelings towards the people who cared for us when we were young. It’s important to recognize that there are a lot of people who love their parents; there are some people who hate their parents; and there are some people who have mixed feelings about their parents. Taking care of them in those final throes of life is jarring; AND it’s an opportunity to reconcile unresolved feelings; it’s an opportunity to treat elder parents with dignity and to make that last piece of life worth living. It’s also something that we’re all going to face at some point so I think that how we care for our parents is also a role model for how the younger people around us can – and hopefully will – care for us.
There’s no ultimate how-to book on caring for our parents. We all learn by what we see around us. So I’d like a dialogue to be stimulated about these issues. Because it’s very hard work – unpaid caregiving labor – and people don’t talk about this shit because it’s like, ‘oh it’s too depressing’, but hey, it’s life! We’re all going to die, you know, and somebody’s hopefully going to take care of us, so let’s think about how we want that to look within families and within society.
I also hope that academics will use this book in classes on aging, on death and dying, and on anything related to the life course. Moreover, Caring for Red is an ethnography, “set” in assisted living, so I hope it will be used in methods classes. And finally, for those who take interest in the history of facism and particularly, in the McCarthy era, the book presents quite a story, which I believe we must not lose.
GAYLE: Thank you, Mindy Fried. The deeply moving and insightful memoir – “Caring for Red”- is available for pre-order on Amazon.com.
My childhood friend, Gail, is six months younger than me. As adults, that age differential is totally meaningless, but as “pre-teens”, it apparently meant a lot. She reminds me that when my mother took me to the local department store to buy me a “training” bra, she followed suit. “I had to get a bra because you had one”. We both bought Peter Pan “AA”s, ironically from a company named after a boy who never wants to grow up, played in film and play versions by petite adult women.
Underneath the story of the bra (literally) is the story of the breast, that contested body part – shall we say, the ONLY body part – on women that is multiply-functioned to feed, and to receive and give sexual pleasure; a body part which is also the site of deadly disease for growing numbers of women.
Purchasing a first bra is a rite of passage into womanhood, sort of like a secular Bat Mitzvah for young girls*. And how apt that this first bra is called a “training” bar, signifying a broader issue of how girls are “in training” to be women.
While many women – particularly those with larger breasts – may need or want a bra for comfort, the reality is that bras are not anatomically necessary to support breasts. In fact, the history of “the bra” suggests that they are literally shaped by cultural norms, which are historically situated, including the economic climate, the role of technology and available materials within a particular time period. My own drawer of bras – and yes, because I’m terrible at throwing things out, I have kept bras for at least a decade – is a veritable history of the changing notion of women’s beauty, as seen through the lens of the shaping of the breast. I might even go so far as to say that the bra is an element of physical and even social control that tells one chapter of the gendered history of women.
Short history of the bra
There is evidence that Greek and Roman women athletes in the 14th century wore simple bands of cloth covering their breasts while playing sports.
And apparently, medieval bras were called “breast bags”, which had distinct cut cups, in contrast to antique Greek or Roman breast bands. In the 16th century, women in France wore corsets which flattened the breast and pushed it up and nearly out of women’s dresses. The containing and shaping of women’s bodies continued well into the 19th century, as women were corseted from breast to hip. In the Victorian era, women’s waists were tight-laced in order to emphasize the breasts and hips.
An American named Mary Phelps-Jacob is credited with inventing “the modern bra” in 1914. It was made out of silk handkerchiefs and ribbons, and she patented her design under the name of Caresse Crosby. Phelps-Jacob came from a well-to-do family, and she decided to create a bra that was more comfortable for dancing (presumably at fancy balls!).
She worked with her French maid, creating a design by tying two silk handkerchiefs together, sewing on baby ribbons as straps and a seam in the center front of the item. She later wrote: “I can’t say the brassiere will ever take as great a place in history as the steamboat, but I did invent it.”
By 1932, the bra company, Warner, introduced the notion of “cup sizes” correlated with letters – A, B, C and D – and added adjustable bands and eye hooks. This is the first time that breasts were no longer treated as one object; rather, they were viewed as two body parts to be enclosed separately. Bras now used latex – as chemists had figured out how to transform rubber into textile fabric that could be woven and was washable.
During World War II, material shortages affected the design of the bra. Some were made out of minimal fabric, called “utility bras”, and they were comprised of cotton-backed satin or “drill”, often in a peachy pink color. Women also sewed their own bras from patterns or magazine instructions, using parachute silk or nylon or old satin wedding dresses.
Some women began wearing “torpedo” bras, which claimed to protect women in war factory jobs. In the 1950s, after the war, women were wearing pointy bras, called the sweater or bullet bra, which drew upon war imagery. The 60s brought the push-up bra.
In 1968, a small group of feminists staged a dramatic demonstration at the Miss America Pageant in Atlanta, to protest the oppression of women. They picketed the event with signs saying, “Let’s Judge Ourselves as People.” And they also dumped symbols of female oppression – girdles, cosmetics, high-heeled shoes, and bras – into a “freedom trash can”.
It’s unclear as to whether there was any real fire at this event, much less women baring their breasts publicly. But the image of bras going into a trash can was captured in a photo, and journalists tagged these women as “bra-burning feminists”, a phrase that was meant to brand them as crazy radicals, but only contributed to the overall protest movement, which catalyzed women for action.
In 1977, the first “sports bra” was created, made out of stretchy rubberized material that held in women’s breasts for comfort so they could do more active sports. That same year, Victoria’s Secret opened its first store, accentuating women’s breasts as objects of sexuality aimed at the male gaze. These two bra types reflected the complex notion of women’s roles in society. In the 1990s, if it wasn’t clear what the bra was intended to do, this “Hello Boys” ad came out for Wonder Bra!
While I know many women who would like to NOT wear a bra, these images are very compelling. Our choice to wear a bra – and particularly our choice about which bra style to wear – is consciously and unconsciously impacted by notions of the so-called ideal body shape, including the socially constructed notion of what it means to be “attractive” or “desirable”, and these notions have changed over time.
So how about today?
In the 2000s, technology has allowed the creation of the “bioform” bra – which provides a consistent shape of the breast that doesn’t rely on what’s underneath it. Pauline Weston Thomas says that this bra “uplifts and contours the breasts so well that it immediately takes ten years off a sideways sagging bust. If you are past 40 with a full cup size you may realize that you have not seen your breasts in this position for twenty years, as it centers and uplifts the breasts.”
This new bra – made possible by synthetic materials and technology-driven design – promises to literally freeze, or even turn back, time! As we age, women’s breasts change in shape and form. They may sag, but the Bioform bra maintains a youthful veneer, or what we perceive as the young breast. The bra defines the shape of the breast, including the tilt and the amount of cleavage (think, push up bras). This bra claims to literally shave years off our age, without any invasive surgery. It’s tantamount to an anti-aging tool, and considered safe. We’re not injecting any foreign substance into our bodies when we wear this type of bra, so ostensibly, it’s not harmful. But is it necessary?
Research on bras…
Based on a study conducted by French researcher, Professor Jean-Denis Rouillon from the University of Besançon in eastern France, “bras are a false necessity”. Rouillon argues that “medically, physiologically, anatomically – breasts gain no benefit from being denied gravity.” On the contrary, he says, “they get saggier with a bra”. Rouillon spent many years measuring changes in the orientation of breasts on hundreds of women, ages 18-35, and found that women who did not wear bras had less sag. “There was no dis-improvement in the orientation of their breasts, and in fact, there was widespread improvement”. A 28-year-old woman who participated in his study and stopped wearing a bra for 2 years says, “There are multiple benefits: I breathe more easily, I carry myself better, and I have less back pain”.
So is there anything wrong with wearing a bra? NO, of course not. And if women need a bra for comfort, want a bra because they’re modest, or want to attract men or other women with their breasts – however they want to accentuate them through the use of the bra – it’s all good! Who am I to judge? Nonetheless, some women find “the bra” constricting and would welcome more comfort.
A few years ago, I was on the treadmill at the gym, trying to undo a day of sitting and staring at my computer, when a casual “gym friend” joined me on an adjacent treadmill. She noticed that I hadn’t been there much lately, and wanted to know why. I didn’t know her well and could have manufactured some quick story, but she had always been so warm and friendly, so I decided to tell her the truth: my 97-year-old father had passed away. Her response was immediate and kind, as she empathized with how hard it is to lose a parent. Then she looked up to the ceiling of the gym, and as I followed her gaze wondering what had stolen her attention, she said in a reassuring voice that “he is in heaven now,” and then looked back at me with a smile. Not knowing how to respond, I smiled back wanly and increased the incline on the treadmill. I wish I could believe my dad was in heaven and, as my partner says, I hope to be happily surprised…
She then asked about the funeral, and I explained that we had it right away because I’m Jewish and that’s what we do. Apparently distracted by the realization that I was a Jew, she paused, and then told me that she had many arguments with her Catholic friends who believe “the Jews killed Christ.” (Wait a minute – where did that lovely empathy go?!) Just as I was thinking about an exit strategy, she came back to earth and said, “It’s crazy that people of all faiths don’t get along.” And as I was mentally excusing her for that detour, she added, “except for the Muslims.” With those words, I was hooked again. I looked back at her and must have appeared surprised because she smiled uncomfortably…and then told me she worried that Muslims – presumably all Muslims – were terrorists. Wasn’t it time for me to leave the cardio area and work on my abs or something? But no, I couldn’t leave now because I saw this as a “teachable moment.”
Her comments really irked me. Here was a kind-hearted, well-meaning person who lacked real knowledge about Muslims, and seemed to be swallowing whole the Fox News/right wing extremist narrative. It upset me that people like her – presumably good people – can be so vulnerable to wrong thinking. Moreover, the current array of bigoted GOP candidates – fueled by and reinforced by right-wing media outlets – are able to reinforce people’s fears into a frightening political direction.
In his analysis of why Donald Trump is gaining traction in this presidential race, scholar and activist Noam Chomsky says that Trump is “evidently appealing to deep feelings of anger, fear, frustration, hopelessness, probably among sectors like those that are seeing an increase in mortality, something unheard of apart from war and catastrophe.” Trump supporters, he argues, “are sinking into hopelessness, despair and anger”. Instead of directing these feelings against the structures and institutions that are “the agents of the dissolution of their lives and worlds”, Trump incites people to blame “those who are even more harshly victimized,” including Muslims. Add to this the fact that Trump is an entertainer! He cushions his message of hatred of “the other” with the bombast of a reality TV delivery. Chomsky warns us that these “signs are familiar,” as they “evoke some memories of the rise of European fascism.”
I hearken back to the consistent message I heard throughout my life from my political activist father – that we must stand up for our beliefs. In the 1940s and 1950s, he was a very effective union organizer, fighting for better wages and working conditions for working men and women. But in 1954, he was called before the House Un-American Activities Committee (HUAC) to answer the now-infamous question, “Are you now or have you ever been a member of the Communist Party (CP) of the United States?” After much emotional wrangling, he decided to challenge the committee’s legality. As a result, he was “blacklisted” from employment in the U.S. and could only find work selling life insurance for 15 years through a Canadian firm. Again in 1965, he was subpoenaed to testify before the Committee. By that time, he had become a prolific playwright, writing about his experiences within the labor movement in an attempt to give voice to working people. His life choices affected his family. We lost friends and were rejected by family members. And yet I have internalized – without a doubt – the importance of challenging injustices.
So what did I say to my treadmill partner when she brought up her fear of radicalized Muslims? I told her that the media would like us to believe that all Muslims are terrorists, but most Muslims are peaceful people. Didn’t the “Koran incite Muslims to commit terrorist acts?” she asked. I replied that I knew that was completely false, drawing upon knowledge I have gained over the years.
Did I say enough to challenge her thinking? I’m not sure. There is that moment when we may ask ourselves, “Am I going to challenge this person? How do I do it respectfully? Am I risking their wrath? Will I feel uncomfortable? While it might be a conversation with just one person, I have no doubt that these interactions can make a difference in changing people’s minds. Maybe they will be more thoughtful or less reactive. But I believe that if we remain silent, we are – in a way – complicit.
There are many ways to fight misinformation and to work for a better, more equitable world. We can organize, write, teach, and, sometimes, just talk with a friend, colleague, or acquaintance. And we shouldn’t be afraid to do so.
I sit opposite Lila , the 25-year-old research assistant, in a small room at a satellite office of Mass General Hospital. She is warm and professional, and we have already discovered that she went to college at the same university where I went to graduate school. She took classes with some of my favorite professors, and we may have been in the same room at one point, when I came back to give a talk on campus. This is a nice ice-breaker. But now, in this room, Lila is in the driver’s seat. She has just finished asking me a load of questions about my health, lifestyle, and social networks. I will be there a total of four hours by the time I complete the entire process, which includes a bone density scan and a few other tests they’ve added this year. In 1996, right after I completed my Ph.D. in Sociology, I was randomly selected as one of 3,302 women from diverse racial/ethnic backgrounds to participate in this mid-life women’s health study called SWAN – or Study of Women’s Health Across the Nation. The study is following women as we transition through menopause, to better understand the physical, biological, psychological and social changes we experience during this period. SWAN aims to help scientists, health care providers and women “learn how mid-life experiences affect health and quality of life during aging”. 
SWAN participants or “subjects” were all between 42 and 52 years old “at baseline” – that, is, when the study began – and we represent seven cities around the country, including my own city of Boston.
When I got the call inviting me to join the SWAN study, I had just completed a lengthy project that involved a lot of interviewing. I welcomed the opportunity to answer someone else’s questions! It also felt great to be a part of important research that had the prospects of influencing medical science. But when I said “yes” to participating in SWAN nearly 20 years ago, I could not have predicted that I would be interviewed by at least 10 or more 20-something research assistants, most of them en route to medical school following this “real-life” experience.
Last year, there was a funding hiatus for the study. I was having a tough year myself and barely noticed that I hadn’t gotten my annual call to set up an appointment. Then a month ago, a letter arrived. SWAN was back in biz, and I’d be getting a call soon! I was thrilled that the study was re-funded in this era of budget cuts for basic science and social science research. I was also feeling grateful that my health was back on track. It struck me that SWAN gave me a regular opportunity to reflect on my life’s circumstances, and to think about how I’m handling growing older, even if it’s only because of a series of questions read to me by a young research assistant whom I’ve just met.
Lila was trained to draw blood, and as she jabs me with the needle, I think, wow, she’s pretty good. We continue to chat, as she measures my waist and hips, clocks how fast I can walk down the narrow hallway, and how long I can balance in a variety of different positions. I’m feeling pretty cocky, until we get to the cognitive test, which they instituted about four years ago. Even though I think my memory is pretty good, being quizzed by a millennial is unnerving. I tell Lila that this test makes me anxious, and she says “yeah, everyone hates it”. That’s only somewhat reassuring, but I appreciate her attempt to normalize my response. Once it’s over – after I spat back a series of numbers and letters in order, and re-told a story about three children in a burning house being saved by a brave fire fighter – I tell myself, “good enough”. That was something my father used to say in moments of stress.
The SWAN Study has taken care to ensure that we are a diverse sample of participants.
Prevalence of hot flashes by race/ethnicity
In Boston, researchers over-sampled African-American women, meaning that the study has intentionally included a larger percentage of African-Americans than are represented in the general population. Other cities have ensured that the sample includes large numbers of Chinese, Japanese, and Hispanic women. This oversampling strategy allows researchers to investigate the influence of race and ethnicity on health outcomes of women as we age.
SWAN-affiliated researchers, Drs. Robin Green and Nanette Santoro, found that most symptoms of menopausal women varied by ethnicity. They write,
“Vasomotor symptoms were more prevalent in African-American and Hispanic women and were also more common in women with greater BMI, challenging the widely held belief that obesity is protective against vasomotor symptoms”.
They also found that vaginal dryness was present in 30-40 percent of SWAN participants at baseline, and was most prevalent in Hispanic women. But even among Hispanic women, “symptoms varied by country of origin”. The researchers conclude that “acculturation appears to play a complex role in menopausal symptomatology” and that “ethnicity should be taken into account when interpreting menopausal symptom presentation in women”.
By including an ethnically diverse sample, the SWAN Study is able to compare the experiences of women from varied backgrounds, which has pointed to important differences that should be of great benefit to health care practitioners. Moreover, SWAN researchers provide participants with information about our health, and flag issues we should explore further. For example, I discovered that I had high cholesterol, something that runs in my family. I’m now being monitored by a specialist, who asked me to take a very lose dose of a Statin. And overall, I’m more conscientious about my diet. The upshot is that my cholesterol levels are under control.
Gathering the SWANS…
Jocelyn Elders, former U.S. Surgeon General
In the past couple of decades, the SWAN team held a number of gatherings to bring Boston SWAN “subjects” together. It’s awesome to be in a room with hundreds of women with one thing in common: we are mid-life women who have gone through menopause! What fun to talk about all the crap we are experiencing without feeling judged or worrying that we might be boring someone.
The first gathering I attended offered workshops where “experts” could answer our questions about sleep (like hot flashes keeping us awake) or provide us with alternatives to Hormone Replacement Therapy. One year, SWAN researchers organized an event that featured the brilliant and outspoken Jocelyn Elders, former U.S. Surgeon General who was a lightning rod for speaking her mind, in support of legalizing marijuana, the distribution of contraceptives in schools, and even suggesting that masturbation might be a means of preventing young people from engaging in riskier forms of sexual activity. Sitting in a diverse crowd of mid-life women and cheering for Elders, whom I have admired for years, was positively thrilling.
Lila tells me a little about this year’s gathering, which I unfortunately missed. I learn that one of the Boston-based Principal Investigators, Dr. Joel Finkelstein, is a serious art aficionado and at the last SWAN Study gathering, he showed a series of paintings by an older woman. His message was that we can continue to grow and be creative as we age. When the interview is complete, Lila hands me my gift. In past years, it has been a cup or a small tote bag, marked with the graceful SWAN logo. But this year, it’s a small box, the top graced with a floral design from this artist.
Gift from SWAN Study
In the abstract of his 2014 application to the National Institutes of Health, Dr. Finkelstein concluded by saying, “SWAN will fill important gaps in understanding the impact of the menopausal transition and mid-life aging on women’s health and functioning in the postmenopausal years. Accordingly, it will provide useful information to guide clinical decisions in mid-life and beyond in women who have diverse life experiences and socioeconomic and racial/ethnic characteristics”.
I’m grateful to be a part of this longitudinal study, to know that the aggregate data being collected reflects a diverse population of women, and that we are collectively contributing to scientific knowledge that can improve the lives of women as we age.
 Fictitious name  The SWAN Study is co-sponsored by the National Institute on Aging (NIA), the National Institute of Nursing Research (NINR), the National Institutes of Health (NIH), Office of Research on Women’s Health, and the National Center for Complementary and Alternative Medicine.
The men in my family were easy sleepers. It wasn’t uncommon to see my father and his six brothers lie down on the floor after a big meal and just nod out. Of course, that left my aunts to clean up, after they had also cooked the meal, and I bet they could have used a nap too. At the time, I figured that taking a post-meal snooze was the “way things were” for the men in the family. But gradually, as I developed a feminist consciousness, I resented these lazy guys. As my age gradually crept up to where theirs were back then, I have begun to appreciate their supreme capacity to sleep just about anywhere, anytime. My father was also one of those people who could nod out for five minutes – taking a so-called “power nap” – only to emerge refreshed and able to fully re-enter the conversation when he awoke.
Later, when he was in his 90s, he began to experience serious insomnia, lying awake for hours and hours throughout the night, going crazy with boredom and frustration. While I sympathized with his dilemma at the time, it wasn’t until I experienced my own sustained insomnia – after a back injury – that I understood how horrible it is to not be able to sleep night after night. I discovered that sleep deprivation steals one’s energy, one’s optimism, and sometimes even one’s sanity. With increasing lack of sleep, the exhaustion compounds and the world becomes slightly, if not majorly, off-kilter.
Insomnia is a lot of things, which includes having a hard time getting to sleep, as well as waking up early and having a difficult time getting back to sleep. Not surprisingly, it isn’t a contemporary phenomenon. No, we in the so-called modern world didn’t invent it. Insomnia goes way, way back. The term “insomnia” first appeared in 1623, and means “want of sleep”. One of the biggest causes of insomnia, stress, is something that people have been struggling with for eons. It’s just the nature of stress that looks slightly different these days, compared to a few centuries ago. But if you think about it, there are a lot of similarities.
We’re stressed because we work hard or we don’t have enough work. We’re stressed because we live in a violent world that is unpredictable. We’re stressed if we experience social isolation or prejudice. We’re stressed when we don’t have enough to eat, and don’t know where the next meal is coming from. We’re stressed because our jobs are too demanding or not challenging enough. We’re stressed because we worry about paying our bills. We’re stressed because we don’t feel loved enough, or because we have tension with our partners or our friends. One might call these universal problems, and these stressers will vary based on your economic situation as well as your race, gender and sexual identity. And maybe a few centuries ago, we might have also worried about predators or major diseases that wiped out entire swaths of people. All of these stressors can lead to loss of sleep.
A lot of famous people are recorded as having suffered from insomnia. Sir Isaac Newton suffered from depression and had difficulty sleeping. Winston Churchill had two beds because if he couldn’t sleep in one, he would try the other. Thomas Edison, like my father, was a cat-napper, because he couldn’t sleep at night. Some insomniacs turned to drugs. Marcel Proust and Marilyn Monroe took barbiturates to help them sleep. English writer, Evelyn Waugh, took bromides to induce sleep. As we know, Michael Jackson died because of a lethal cocktail of medications to help him sleep, including propofal, used for sedation before surgeries, lorazepam, used for anxiety, and a host of other meds, including midazolam, diazepam, lidocaine and ephedrine. He was obviously so desperate to sleep that he was willing to try them all.
Author and columnist Arianna Huffington calls insomnia a “feminist issue”, and has written columns in Huffington Post lamenting her lack of sleep from jet lag. Another Huff Post columnist, Dora Levy Mossanen, calls insomnia a “smart, devious virus that mutates and changes form every season like the flu virus. Except that this tricky bugger is tuned to our circadian rhythm and is able to change and disguise itself at whim to confuse the heck out of us”. Mossanen does all the “right things”: She doesn’t drink caffeine, goes to bed at a decent hour, drinks hot milk before bedtime, takes warm baths, reads non-stimulating books, listens to guided meditation on her i-pod, and imagines serene seashores. And yet she says, “I toss and turn at the beginning of the night, counting backwards and forwards so many times that if my mind was prone to mathematics, I’d have solved all the mathematical problems of the world by now”.
For the most part, my insomnia has cleared, but every so often it rears its ugly head. While in the midst of a minor insomniac “relapse”, I asked my friends and colleagues for their insomnia narratives. I wanted to know how long their insomnia lasted, why they thought they were struggling with sleep; what they did when they were awake; how it affected them the next day. I learned that the main causes of insomnia are:
* Anxiety, the everyday kind like preparing to teach a class, and larger anxieties, like worrying about keeping a job; * Depression, which impedes relaxation necessary to fall and stay asleep; * Medications, because some meds like decongestants and pain meds keep us awake. Antihistamines might initially make us groggy, but they can cause excess urination which gets us up a lot during the night; * Alcohol, which may make you more relaxed, but prevents deeper stages of sleep and can cause you to wake up in the middle of the night; * Chronic pain, which is distracting and worrisome and can lead to anxiety, which prevents sleep; * Medical conditions, like arthritis, cancer, heart disease and Parkinson’s disease, which are linked with insomnia; * Poor sleep habits, like weird sleep schedules, or an uncomfortable sleep environment; * “Learned insomnia” – which is worrying too much about not being able to sleep, which makes it hard to get to sleep; and * Eating too much before sleeping or eating the wrong snack, which can give you heartburn and make it uncomfortable to fall sleep.
In response to my call for insomnia stories, only women replied. I know that isn’t because men don’t experience insomnia; but perhaps men don’t want to reveal their sleeping problems publicly, even though I promised confidentiality. (It’s not too late, for my male readers!)
One woman said, “You do realize you’ve opened the floodgates, yes? Amazing topic. Of course, I’m too sleep-deprived and deep into end-of-semester madness to respond right now! Maybe during my next bout of insomnia (perhaps tonite). ;-)”
Here are a few responses from other insomniacs:
One woman says, “Funny you should ask, as I am suffering from insomnia just now, maybe a week long bout this time, but by far not the longest ever. I wake up about 4am and cannot fall back asleep if my life depended on it. Not sure why I have such a hard time staying asleep, maybe it’s hormonal (menopause) or maybe it’s all the craziness at the office (new department chair, no office support as the old secretary retired, research lagging, …). Often I am not the only one awake, as my spouse is also a stressed-out insomniac. I typically try to fall back asleep, but if it doesn’t happen, I get up and read in the living room until I feel exhausted from being up at 4 am. What sometimes works is counting backwards from 100 in another language. Needless to say, the next day I feel a bit out of it, but nothing like the “zombieness” I did when my child used to wake me up. I am not desperate yet, but may try to find my melatonin from the previous bout to get me back on track. Sometimes it works, sometimes it doesn’t”.
Another woman says, “My insomnia stories are boring. I get up and clean the house, read, catch up and/or get ahead on my work. That makes me feel like I am not wasting my time trying to fall asleep. Usually that day I am racing, energetic and feel good about all I have accomplished. By that night I am crashing and I pay the next day in bodily aches/pain. Not very exciting…”
Another says, “I have had quite a few episodes of insomnia. There were times when I would go days or even a week without adequate sleep. I would either fall asleep and then wake up in the middle of the night and not be able to go back to bed, or I would just simply stare at the ceiling until I finally fell asleep, only to wake up about every half an hour for the rest of the night. Either way, insomnia sucks! I eventually couldn’t take it any longer and sought medical help. Come to find out, I have general anxiety disorder and that was greatly affecting my sleep. Even now – I am on medication- I still have bouts of insomnia when I am highly stressed. My mind is constantly going, so when something important is coming up I find myself having trouble sleeping. In the middle of the night I have tried a number of things: read a book, go to the gym (thank you, 24 hour fitness), eat, watch TV, and try and go back to sleep. As a student, during the day I am pretty much reading, writing, researching, or preparing for a class I TA for.
“After a night of insomnia, I usually feel terrible the next day. Even if I am tired, I don’t try and nap because if I do, the likelihood of getting a good night’s sleep decreases. If I go a few days or even a week without sleep, my brain has pretty much checked out. I go through the motions but I don’t feel like I am really all there. Hopefully that makes sense. Insights? I would say that everyone is different and should try different things to help them sleep. I hate taking medicine, even when I am sick, so seeing a doctor was the last thing on my list. I tried doing yoga, eating better, not watching TV or reading at night…but nothing helped me. Being put on medication was a great relief because I sleep really well, for the most part”.
And finally, one of my neighbors says, “Sometimes I look out the window to see who else might be up in the neighborhood. I am tempted to text them or call and get together, maybe we should start an insomniac club”.
That sounds tempting… I suppose that one strategy I’m employing is writing this post. Maybe “outing myself” as an insomniac will help diffuse the potency of this insidious problem. If I were to characterize my current “brand” of insomnia, it’s “learned insomnia”, meaning that I begin to fall asleep and then just as I’m fading into a hazy fog, my brain says “you’re falling asleep”, at which point I’m awake! Luckily, the problem has lessened since I first put out the call for insomnia stories. May it fade away!
Tell me your insomnia story! What has helped you overcome your sleeplessness?
My first job in Boston was working for Senator Jack Backman, a progressive state Senator who headed up the Human Services Committee on Families and Elder Affairs.I was considered his “child and family expert”, but I hardly felt like an expert, particularly in that shark tank of policymaking. I loved and hated that job, the daily tedious business of writing legislation, sitting for hours in meetings, taking orders as the lowest of the low on that totem pole. But I learned how to analyze a state budget, and how bills get passed, and who makes decisions behind which closed doors. I also learned that I wasn’t suited to moving things from inside the system, but I loved being an outsider trying to make the system move.
Senator Backman sponsored the first universal child care bill in the state, arguing that all children should have access to early childhood education. While this seems laudable now, at the time it was laughable because people felt it was so “out there”, beyond anything that was remotely possible. This was the early 80s, and while women had already been entering the labor force in droves, some politicians were just getting used to it.
The Governor, a rabid right-wing demagogue, vociferously argued against increasing child care subsidies to poor families, much less even considering universal child care policy. His famous line was that “child care is a Cadillac service”, a “luxury” that the state could not afford, particularly because it was women’s place to stay at home to care for their families. It took several decades for Massachusetts and 39 other states to finally implement universal pre-kindergarten (UPK). The most compelling part of my job was working with a ferociously committed group of early childhood teachers who fought for more funding for child care programs, including funds to increase child care worker wages. Since my role was as a liaison to a liberal Senator, they lobbied me to take up their cause. Initially I felt flattered that they were trying to convince me to support their issues, but I soon realized that I was “one of them”, except that I had some leverage to help them get access to key legislators.
It was from this group of amazing early childhood education advocates that I learned about the need for government subsidies to defray the high cost of child care for low- and middle-income parents. It was from them that I learned about the high turnover of child care workers because of their low wages – and the negative impact of teacher turnover on the quality of care to children. Not too soon after I left that job, I became a lobbyist for a statewide child care association. Recently, I organized a panel for the Sociologists for Women in Society winter meeting, and as I looked for speakers who could demonstrate the wide range of jobs that sociologists have in the “applied world”, I discovered Tekisha Everette, a brilliant Sociologist who, at the time, was working as a lobbyist with the American Diabetes Association. Tekisha spoke about why she chose to be an Applied Sociologist, the substance of what she actually does in her job on a day-to-day basis as a lobbyist, and how she incorporates a race/gender/class lens in talking with policymakers about public health issues. Having worked in the policy world, I was particularly moved by how Tekisha uses her scholarship as a sociologist, incorporating analyses of how race, gender and class affect public health policy issues. Here’s a snippet of our conversation:
Mindy: Tekisha – why did you choose to do Applied Sociology?
Tekisha: I chose Applied Sociology because I wanted to combine my educational background – political science, policy and sociology – to affect change in society. I wanted to go beyond studying society to applying that knowledge to drive policy change in society.
M:Can you tell me a bit about the types of applied jobs you have held?
T:I am a lobbyist now but I’ve been policy analyst and a liaison between state government employees and a firm of economists. In each position, I have used my research skills as well as my sociological theoretical lens to execute my work. For me, this has been an amazing experience because I am relevant in a variety of spaces and I can alter my voice and perspective based on what is needed in the situation.
M:How would you describe the role you play within the organization’s structure?
T:I am the lead lobbyist for my organization and I lead a team of three lobbyists and one manager. I provide strategic leadership on policy and legislative efforts of the Association. I also serve as a member of senior management for the department and help shape a number of our projects and priorities. Since most, if not all, of our initiatives have to be evidence-based, I spend a fair amount of time reviewing, requesting, and explaining research to support our legislative ideas.
M:What does the work of a lobbyist entail?
T:Interacting with Members of Congress and their staff, the White House and federal agencies, training and helping our advocates to use their experience to gain support for legislative proposals, reading/reviewing research and translating it into policy.
M: How do you incorporate a sociological lens in your work?
T: Since I have come to my organization, there have been a number of times where I’ve been able to bring a sociological lens to affect decision-making. Overall, I think I have worked to change the way we make decisions to ensure that we take a variety of backgrounds and various interests into account. Being a sociologist gives me the advantage of being able to go beyond the data and making it relevant to policymakers in ways they can understand. My goal is to always be sure I can explain the impact of policy at a localized level – and to incorporate the impact from a gender, race and class perspective.
M: What drives you to do this work?
T: I believe that you have to be a able to explain anything you do to your grandma! Perfecting the art of being able to use research and explain it to a variety of audiences is important to me.
Tekisha has just accepted a new position to become the inaugural Executive Director of Health Equity Solutions in Connecticut. The organization is a non-profit focused on addressing health equity issues in Connecticut through public policy, education and advocacy activities. She begins her new position in May, as she takes on another opportunity to have an impact in the policy arena!