In this interview, Gayle Sulik, Founder of the Breast Cancer Consortium and Co-Founder of Feminist Reflections, talks with Mindy about her new book, Caring for Red: A Daughter’s Memoir (Vanderbilt University Press, forthcoming, Summer, 2016).
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 Red provides 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.
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.
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.
Finally, here’s a great clip from Menopause, the Musical!, just for fun: https://www.youtube.com/watch?v=ndFBFXV3jjs
 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.
Melz Durston: This weekend, Jamaica Plain will come alive with the sounds of local songwriters and the scents of citronella burning on the breeze. Inspired by Somerville’s annual community gathering, Mindy Fried and Marie Ghitman established JP Porchfest officially last summer, and this year, the duo sees the culmination of their hard work unfolding all over the neighborhood. Featured at Saturday’s all-day festival are more than 130 musicians playing across 72 porches, including Mark Lipman, Sugarcoma, Between Trees, the Isabel Stover Trio, and former Fuzzy member Chris Toppin and her band LOVE LOVE.
Vanyaland caught up with Fried about the behind the scenes work involved in setting up JP Porchfest, the evolution of her community, and her efforts to bring everyone together for the event. For the full list and schedule of performers, click here.
Melz Durston: Jamaica Plain has its own personality, when you compare it to downtown Boston. How did Porchfest evolve to fit in with what JP currently has on offer, for music-minded folks?
Mindy Fried: There are many neighborhoods throughout the city that have a personality and a life of their own. I have lived in Jamaica Plain for almost 35 years, and when I meet some native Bostonians, my lengthy tenure in the city doesn’t translate to actually being from here! That said, I have seen a transformation in Jamaica Plain over the years. Jamaica Plain, as long as I’ve lived here, has also been a welcoming destination for people in the LGBTQ community.
In the past, you have hosted Chris Toppin (Love Love, Fuzzy) and Mary Lorson (Madder Rose, Saint Low); do you have plans to create a mini festival taking place in just one venue in the future, featuring Boston musicians, or is the whole point of Porchfest, to feature different locations and in doing so, give people who are local to JP, the chance to perform?
Our focus is to create a decentralized festival, one in which the audience moves around from place to place. It’s almost like a backyard barbecue on steroids! We tried to cluster the porches so that the audience could stay within a fairly small radius, and be able to hear five or six bands or solo musicians within the four hour period of the event. This coming year we will expand the hours to six, and we are also expanding the event to other parts of the neighborhood. The whole point of Porchfest is to feature different locations and give local musicians an opportunity to perform.
Do you think that Boston/Cambridge/Somerville/Allston have a passionate undercurrent running throughout their neighborhoods — where musicians are always seeking ways to create?
Certainly, the other neighborhoods you mention, and many others throughout the area, have a lot of creative people looking for ways to connect. Through our experience with JP Porchfest, we found that musicians really welcomed the opportunity to be part of a community building experience. This year, we will have more bands, and we will also include circus arts, theater, dance, and spoken word.
Is there a harmonious collaboration to be found, between existing venues and separately organized events in JP and other neighborhoods that do not rely on established venues?
We are following our instincts as organizers and lovers of music, and are just beginning to make some really nice connections with other groups that are putting on music events. I think that over time, we will explore some of these connections further. But what distinguishes what we are doing from the more traditional performance venues is that we draw from the community — including professionals and aspiring musicians — who perform in the community, and they have an equal opportunity to be part of the event — it is not curated — whatever level of musicianship they have.
Have you noticed a difference yourself, in your home-city, over the years, with people becoming more insular and less likely to go out and enjoy a live show? Especially with online-focused interactions including live streaming of concerts such as Boston formed Concert Window?
That is an interesting question, Melz. As a sociologist, I think a lot about the issue of community and the extent to which people feel isolated and disengaged. In my own experience, I am finding that the people in my universe want even more opportunities for social connection. Every time I think that my street or my community is so unique, I discover that other communities around the country are creating opportunities for people to gather and connect. Consider the phenomenon of “meet ups”, where people use the Internet to find a group of people who share an interest in some sort of activity, but then get together — in person — for a particular event or gathering. One might point to this and say that it is borne out of the lack of community, but I think it speaks to the desire of community and the willingness of people to reach out to create it themselves. As to whether people are going to live shows, I’m really not sure. I know that I think twice about going to a live show these days because of the cost. Right now, there is a touring alternative chamber orchestra that has a storefront in Jamaica Plain called A Far Cry. Some of my friends and I provide housing for them when they are in Boston, in exchange for going to their concert. They’ll be playing at porchfest on Saturday.
In what ways do you hope that JP Porchfest will bring people out and together again? I think Concert Window regularly ties in with live shows at Club Passim, which keeps this live element…
In order to have a successful event, we realize that we need to work throughout the year to deepen our relationships with people in the neighborhood. We are working closely with a variety of community organizations to reach into neighborhoods where we only had a small presence this past year, to broaden that reach. One of the staff people from a community organization we work with has excellent contacts in all of the Latino media outlets, so this will be tremendously helpful in bringing out this segment of the population. We are continuing to work organizations to ensure that people of all socioeconomic backgrounds are involved. We reflect on what a success the event was last year, even though it was just our first year. We believe this speaks to the hunger for community and the desire to create and consume art.
How much organizing and inspiration has the whole project taken and are there things you might do differently at future Porchfests?
Organizing Jamaica Plain Porchfest took an extraordinary amount of time and energy, but we loved it. In order to create an event that would go smoothly, we established relationships with the City of Boston arts administrators, the local police, the city’s neighborhood services, and the Office of Inspectional Services. We didn’t want to have any surprises undermine the success of the event. And then we discovered that in meeting with all of these folks, we were creating a community of support that not only helped us avoid problems, but also established the event as part of the City of Boston roster of cool things happening.
Any plans to take them outside of JP or to other cities, or is this a purely local project?
We believe that any community could create its own Porchfest. We have friends all over the country who want to do it. The main barriers are motivation and time. Marie, my co-organizer, has begun writing a simple ‘how to’ guide, and has had one meeting with a musician who would like to organize a porchfest in her community.
Would you bring former GRCB (Girls Rock Camp Boston) or LRCB (Ladies Rock Camp Boston) bands/acts into your program, in the future?
As you mentioned, LOVE LOVE played last year’s porchfest. Now that the event was a success, we would love to work more closely with Chris Toppin and GRCB and LRCB girls and women.
What was it that inspired you to start up Porchfest in the first place?
I am a closet singer and pianist, but definitely not ready for prime time. My inspiration came from a desire to build community through the power of music. Marie, my co-organizer, and I have been friends for many years, co-ran a childcare cooperative when our now adult kids were babies, and we welcomed the opportunity to work together. The experience of organizing JP porch fest was truly wonderful. There was a lot of laughing and inspiration in this experience.
What was the last gig you went to in the Boston area, and have you discovered new local music, through hosting Porchfest and through the people you have met?
The last gig I went to was a concert by Debo Band, which is headed up by Ethiopian-American musician, Danny Mekonnen. A couple of Debo off-shoots played JP Porchfest and they were amazing. So it was thrilling to hear them play in concert. Debo has gotten quite a bit of recognition, and we’re hoping that they’ll still honor us with their musical presence in our home-spun event!
JAMAICA PLAIN PORCHFEST :: Saturday, July 11 from noon to 6 p.m.
All-ages, free: Full schedule of performers can be found at jpporchfest.org
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?
For the past six years, sometime in early fall, I don an apron, which I place on top of a (borrowed) flowery shirt-waist dress, tie my hair in a bun, and call myself “Betty”. That’s Betty, as in Mrs. Crocker, the mythical 50s mom who graced the boxes of many a cake mix. A woman – or at least the character of a woman – who is the opposite of the mother I grew up with, who hated being a “housewife” and hated being in the kitchen. But I digress. Betty invites neighbors to an “apple bake-off”, a contest in which everyone “competes” to have their “entry” judged as the best baked apple treat. (Spoiler: In case you didn’t know, there never was a real Betty Crocker.)
Here’s a little backdrop: I live on a street with many traditions. My neighbors have been putting on a Halloween extravaganza for many years that attracts a thousand children and their parents – yes, 1,000, I kid you not – which involves gory surgical skits with manic doctors and bloody body parts, lots of chocolate and a “honk” band that marches up and down the street playing New Orleans jazz. We have block parties in the fall and pot lucks throughout the year, and we even occasionally sojourn out of the neighborhood to go apple picking or to visit a museum together, caravanning with a string of cars if necessary. So it is in keeping with the (very) social world of my street that Betty decided to make a visit.
After the first successful year, Betty decided to come back the next year and the next, and the bake-off officially became a new tradition. I guess that is how traditions are created.
If the bake-off were in rural Tennessee or even Western Massachusetts, it would not be such an anomaly. But it turns out that the real-life country is not required for a group of friends to compete with one another to see who can make the most delicious baked apple treat. In fact, bringing the country to the city may be part of the appeal. We can “do” country in the city, but then we pop on the subway to see a play downtown. The competitive spirit in the bake-off kinda comes with the territory, but in our bake-off, the competition comes with a fair amount of tongue-and-cheek. Although each year, I have noticed that a lot of people seem to up their game, and that benefits everyone’s palate.
To determine the winners, an “elite panel” of young people (i.e. awesome kids) sit in judgment, evaluating each entry with a tough set of criteria that appears to be borrowed from TV cooking shows. The truth is that this discerning band of judges is ruthless. So we decided to narrow the possible score they can dole out, from a 1-10 scale to a 7-10 scale. Yes, 7 is now the lowest number an entry can receive. But they take it very seriously, to be lauded; they do a great job; and everyone has fun. The bottom line is that no one loses too badly, and pretty much everyone is a winner, or as a native Bostonian would say, a “winnah”. This year’s 1st place winner received a cheesy, but effective, trophy. But everyone who bakes gets either a 1st or 2nd place ribbon.
In the widely popularized pop-novel, “Bowling Alone”, Robert Putnam argues that the fabric of our social connections has dissipated, leaving us alone and isolated from one another. When the book came out in 1990, a number of critics said that just because people aren’t bowling together, it doesn’t mean that they aren’t finding other ways to come together. Civic activities have continued to flourish in other forms, they argued, from youth soccer leagues to book clubs to going to church or mosque or synagogue. Nonetheless, people are working longer hours, either in salaried jobs that have a “longer hours” culture, or by juggling more than one job in order to feed the family. Putnam says that these longer hours pull people away from their communities, and he’s probably right.
Technology and social media are now being deemed as the culprits, stealing time from in-person communication. In fact, ironically, there are even blogs and YouTube videos lamenting how people spend too much time on their computers.
A lot of people, myself included, believe that people are still hungry to feel a “sense of community”. According to one extensive study published in the American Sociological Review (McPherson, Smith-Lovi and Brashears, 2006), there has been a huge drop in the size of our social networks. As a result of having smaller social networks, we have lost “discussion partners” or people with whom we can share confidences, either within and/or outside of our families. Moreover, given the implicit and explicit racial and class divides in our society, the potential for broadening our social networks beyond people who look like us is stymied.
Which brings me back to Betty, and a lot of other community-building events located in my neighborhood, and I’m sure many others around the country. For example, we have a very cool event in the ‘hood called JP Reads, which is “a community-wide literary celebration” where people read and discuss the same book, and get to meet the author (http://www.jpreads.org/).
And there’s Wake Up the Earth, a local festival in May that begins with several parades coming from a number of locations in the neighborhood and ultimately merging together on an expanse of greenery next to a subway stop, where live and local entertainment erupts.
And then there’s the ever-magical Lantern Parade, which was happening when my 23-year-old daughter was a kid, where young and old walk around the local Jamaica Pond at sunset carrying decorated lanterns with candles inside that reflect off the water.
Or most recently, a new tradition, the Jamaica Plain Porchfest (www.jpporchfest.org), where musicians play a wide variety of musical styles on porches all over the neighbhorhood. (Full disclosure: I’m one of the organizers of this last event, along with my buddy, Marie.)
I’m wondering about your communities. Do you feel a “sense of community”? Is your community “place-based” or is it virtual or both? Is your community defined by work or family or a particular interest, or all of the above? If you don’t feel a sense of community, do you want to? And if you do, do you have any good ideas? I’d really love to hear…
Meanwhile, here are some photos from this year’s Bake-Off! And the winner is…
Photo credit for the Bake-off pictures: Joni Lohr
Photo credit for JP Porchfest pic: Sam Sacks
re•tire [ri-tahyuh r]
1. to withdraw, or go away or apart, to a place of privacy, shelter, or seclusion: “He retired to his study”.
2. to fall back or retreat in an orderly fashion and according to plan, as from battle, an untenable position, danger, etc.
3. to withdraw or remove oneself: “After announcing the guests, the butler retired”.
4. to withdraw from office, business, or active life, usually because of age: to retire at the age of sixty.
5. retirement or withdrawal, as from worldly matters or the company of others.
One of my friends is passionate about Latin America and travels widely, monitoring elections and writing for an international journal. Her life-long “career” as an energy consultant is gradually shifting to her passionate “avocation”.
A family member who is a therapist decided to significantly pull back on her work hours, but then it didn’t “feel right”. Instead of leaving her practice, she decided to slow down the process, and continues to see clients. She is working fewer hours, spends more time with her children and grandchildren, and has increased her volunteer work.
Another friend had a decades-long successful career as a librarian. As her retirement approached, she was uncertain about what would come next, but stayed open to possibilities. She now works as a volunteer in a number of non-profit organizations, travels, reads, and has time to hang out with friends and former colleagues.
And me? I don’t plan to retire for a long time. First off, even though I’m technically approaching the typical “retirement age”, I like to work because I’d like to think that I’m contributing to making the world a slightly better place, at least in the small piece of the universe I inhabit. Maybe more basic is the fact that, like many people, I can’t afford to retire!
When it comes to major life changes, I like to be fully informed, so I decided to study “retirement narratives”. It’s an informal study that is personally driven by my desire to remain engaged in and satisfied with life when I stop working for pay someday (who knows which day). My study is a pre-emptive strike against loneliness and a concern that as I age, I will be on the periphery, no longer a contributor to the world, no longer a player in daily life…I know this can happen because I’ve seen it happen, and I bet you have too. My observations and intuition have been confirmed by reading a ton of books about aging, in preparation for an aging course I taught at Brandeis University, as well as following the substantial media coverage of issues of aging. My feeling was that my informal study would provide me with an opportunity to better understand this life changing event from a sociological perspective.
My role model for retirement was my father, who didn’t stop working in his job as an English professor until he was around 95 years old. I used to think that his formula – essentially, to never stop working – was how I wanted to live my life. I, too, imagined that I would basically work full-time until I dropped. But now I’m re-thinking my plans. And that’s where my research comes in. My study basically consists of informal “interviews” with friends who are reducing their paid work hours, as well as informal “chats” with acquaintances I run into in random places, like CVS, walking around Jamaica Pond, and on the street. For the people I know and with whom I have regular contact, I plan to follow them over a long period of time, meaning that I want to see what they do and how they adjust for as long as I know them, which could be until I or they die. With these friends, I hear the intimate details of their decision-making. Some of them had full-time jobs in organizations or institutions that provide incentives to retire, and some worried that they might lose their jobs past a certain age. Others work more autonomously as therapists or consultants.
I want to understand how these friends feel about their paid job as they consider “winding down”: What do they consider will supplant the intense time and commitment they have made to this work? Do they have fears about retirement? Do they have passions they plan to pursue, and plans in place? Do they view retirement as an abyss or a welcome opportunity, neither or both? What will the transition period away from paid work be like? Do they just stop working for pay one day, or do they gradually decrease their hours, and increase the time they spend doing unpaid work or having fun! (imagine that!) How happy are they after retirement, which may include how active they are and how social they are? And lest we forget, how does their health – or the health of their partner – factor into the equation?
The research questions I employ with my “almost, kinda” friends have a one-two punch. We start by asking one another a few basic questions: “How are you?”, is the starter. Can’t get more basic than that! And then a probing question: “And what have you been up to?” Now this question also seems pretty basic but the reply reveals a lot through their words as well as their body language. If/when they say they’re retired – or just that they left their job of many years – my panoply of probes is unleashed and I ask, “Is it a good thing?” This is a general yes-no question, followed up by “How do you fill your days?” That’s the meat of what I’m looking for.
My informal study has no real parameters. My “sample” is fairly random; it’s not designed with any demographic in mind; I’ll talk to anyone. I’m not keeping track of how many people I’m interviewing, and I’m cool with going with the flow of the conversation, wherever it leads. I’m not discovering anything new, in a broader sense. There’s plenty of literature that argues for continued engagement in life, as one ages. Instead, my study is about getting at the particulars. What do people do as they’re considering retirement? Do they consciously prepare? Once they retire, what are they doing and how do they feel about it?
The issue of retirement has become even more salient because we are living longer. For example, in 2000, the life expectancy in the U.S. for women was 77.6, and for men it was 74.3. In 2010, those numbers had jumped to 79 and 76 respectively. It’s important to note that there is also a racial disparity, as reflected in 2010 figures, with white women projected to live until they are 81.3, and African-American women projected to live until they are 78. For men, the comparison between white and African-American men is 76.5 to 71.8, respectively.
Despite these gender and race disparities, an increase in longevity has resulted in a larger gap in time between official retirement and the point where people stop working for pay altogether. Dr. Mo Wang from the University of Maryland calls this period “post-retirement”, a time when people may choose self-employment, part-time work or temporary jobs. Dr. Jacquelyn B. James, from Boston College’s Sloan Center on Aging and Work (http://www.bc.edu/research/agingandwork/) calls this “transition” period “the “crown of life”, which implies that it is a special time, perhaps less fraught with the demands of one’s “regular” job which may have consumed years or decades of their lives. According to Wang’s research, “retirees who transition from full-time work into a temporary or part-time job experience fewer major diseases and are able to function better day-to-day than people who stop working altogether.”
At the same time, other research doesn’t focus on the impact of paid work; rather, it notes that as people age, those who stay engaged in life, both socially and intellectually, will fare much better than those who retreat, regardless if they are working for pay or doing something else like volunteering, doing unpaid caregiving work, or just about any activity that engages them.
In my effort to amass retirement narratives, I welcome you to tell me yours! It would be great to hear about your journey, whether you’re in the thinking stage or you have started instituting changes in your paid work schedule, or you have left a paid job and are in a next chapter of your life!
Also, just for fun, check out this video of a policy debate between Republican Paul Ryan who wants to increase the retirement age, claiming that the Social Security fund is depleted, and Democrat Debbie Wasserman Schultz, who strongly disagrees: https://www.youtube.com/watch?v=DIrltAkTf38