“Coming Out” About (In)fertility

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I haven’t been keeping my fertility challenge a secret per se. I have, however, for the past three years struggled negotiating the elusive “outside world” in relation to my frustrations, disappointments, and fears trying to conceive, which have wreaked havoc on my sense of self. More often than not, it has been easier (and felt safer) not to share these pains, pushing me further into isolation.

As an academic, I study health and disease narratives, politics of the body, and feminist discourse yet I’ve feared writing about my personal experiences that intersect my research interests. It has taken me three gynecological surgeries (one from IVF), 70+ needles (and counting), countless pills (steroids, estrogen, progesterone, baby aspirin, prenatal vitamins, letrozole, clomid, metformin, valium, antibiotics, etc.), and too many bloody months to finally write myself out of this silence.

Taking pen to paper (and fingers to keyboard), I started writing a nonfiction story about my IVF cycle last fall. It morphed into a meditation on what it felt like being a reproductively challenged woman in this society, a reflection on my late mother, and a realization that I no longer recognized the relationship I had with my body. On a whim, I submitted an abstract to (and got accepted to talk at) this medical humanities conference in Iowa where I shared my story and discussed the politics of fertility challenges as a larger social issue. This was my first “coming out” to people I didn’t know.

It felt really good to share.

In my breakout session many women shared their fertility stories, which was heartening. Some women were still grieving their miscarriages, job loss because of a pregnancy, and isolation despite several decades passed. Others were feeling “the pressure” and felt conflicted about their decision to pursue demanding professional careers. We all craved a safe space to openly talk about our concerns beyond select friends and family. The group supported my assertions that there simply aren’t enough conversations (public and private) about, and support for, fertility challenges.

A woman I met at the conference just tweeted this blog post to me about unique (and not so unique) fertility challenges in academia. From her, I learned that this week is National Infertility Awareness Week. While I dislike the term “infertility” or its classification as a disease (it’s too final, stigmatizing, and pathologizing), I love the idea of raising awareness about fertility challenges and engaging more people in a nuanced conversation.

Although each woman deals with her fertility challenges differently, the Internet seems to offer general lists, guidelines, and tips on how to help support the women we care about. Here are a few. A Google search will yield more.

These lists are a bit crass but they cut to the chase. Personally, I rather share lists of what have been unusually difficult and unexpectedly comforting (beyond the obvious) rather than a “to do” and “don’t” list.

These lists are far from exhaustive, but here goes.

Unanticipated difficulties:

  • Knowing no one else in their early thirties enduring IVF or other aggressive fertility treatments is a psychological mind f*#k.
  • It was easier to give needles to myself than have my partner do it. I don’t know why.
  • Every medicated month, I’ve had disruptive hot flashes, emotional turbulence, chronic headaches, and/or fantasies of wanting to punch irritating people (often troublesome students I teach).
  • Not knowing why I’m not getting pregnant (despite ovulating, having balanced hormones, newly cleared fallopian tubes, and good general health) has been a hellish liminal space. Okay this one might be kind of obvious.
  • Trying to become a mother rehashes the pain of loosing my mother (over a decade ago) to breast cancer.
  • With more medical intervention and involvement, the emotional pressure and expectation of getting pregnant swell. Reoccurring periods become increasingly devastating. This has been hard to manage at school and work.
  • I really hate feeling pitied. If I sense another’s discomfort or pity, my instinctual reflex is to ease that person’s awkwardness by minimizing my own experience and pain, and moving onto other “lighter” conversation. This has been incredibly counter-productive.
  • Trying this hard to become a mother tests my feminist and liberal sensibilities about how I measure my self-worth and define the meaning of family.
  • People tend to be better at responding to difficult events (like loosing a parent) than difficult non-events (like not becoming one). This has been isolating.

Pleasantly surprising acts of comfort:

  • The number of friends offering to help me with the medical stuff: needles, doctor appointments, post-operative care, research, etc.
  • Male friends and family doing research and asking specific questions about my procedures to better understand what I’m going through. All of them did one and/or the other.
  • People asking how my partner is holding up and asking how to support him.
  • Frequent or spontaneous calls, texts, and check-ins from friends on the most “ordinary” days recognizing that regular days are often challenging.
  • The number of women (mothers and non-mothers by circumstance or choice) sharing their own fears and vulnerabilities about fertility.
  • People matching my vulnerability by sharing some of their own (fertility related or not). This has been a helpful way for me to remember that we all have “stuff” going on.
  • Telling fellow grad students and departmental faculty. They have been a surprising and most welcomed support system. It’s also a huge relief and source of inspiration to be around people who embrace my desire not to separate the personal from the academic.
  • Those who sincerely ask questions (medical details, emotional state, how they can help, or whether I wanted to punch anyone that day, etc.)
  • My reproductive endocrinologist giving me hugs. Frequently. And letting me cry on her shoulders.
  • People who ask how I am, then ask how I really am after I tell them “I’m fine.”

In the spirit of National (In)fertility Awareness Week, I’d love to hear your thoughts stories, or questions. Sharing is caring after all.

And because all health campaigns need celebrity spokespeople…

 

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Garageband and Sounds of Equality

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This isn’t a fancy or sophisticated audio track. It’s small collection of sounds taken from the November 8, 2013 rally at the Hawaii State Capitol during the marriage equality bill hearing, SB1. I video recorded both the opposition (heard as the drummers) and the supporters after the House passed the bill (heard as singing Hawaii Aloha).

Stitching together these two tracks took a little longer than expected. Mostly because there were multiple little steps along the way I didn’t anticipate. For example, the original file is in movie format so I used iMovie to extract the sound files, then imported the sound files from Garageband. (I had various Youtube video tutorials up during this process and I already forgot a lot of the steps.)

After putting the two sounds together (fading out one and fading in the other), I exported the audio file as an mp4 into iTunes. WordPress wouldn’t upload an mp4 file so I searched the Internet on how to convert an mp4 into an mp3. After doing that, I realized that WP doesn’t upload mp3s either. But now I know how to convert mp4s to mp3s.

I saved the mp3 file in Google drive and created a hyperlink for anyone interested in listening to my modest creation. The result, “Sounds of Equality.”  I thought about adding other sounds (more because I wanted to play with the preset noises and instruments that come with Garageband) but decided against it because the two files are instrumental and musical enough.

Relational Databases and my Fantasy Project

sql-cartoonI’ve worked with, and created both relational and flat databases during my public health career. It never occurred to me to consider constructing databases and mining them for any humanities type projects until this Digital History course. For my class project I’ll likely be working with a flat database, where the categories and fields are not related to one another. I don’t know if I have enough data or time in the next month to construct a relational database using structured query language (SQL). Also, it may not be relevant for the project’s scope, which looks qualitatively at language and discourse around menopause in the postwar decades.

That being said, in my dorky academic fantasy, it might be interesting to expand this project and look at women’s medical records at the time (if they exist and I could get a hold of them) and mine the data. (I’ve always been a fan of mixed method approaches for research projects.)

Filemaker Pro, SPSS, and Access are three types of SQL-based relational databases I’m familiar with. In my fantasy project, I’d probably use Filemaker and train an assistant to enter data from the medical records. (Of course I’d have written an awesome grant for a bottomless pool of money to hire all the monkey data crunchers I needed.) We would need to set up the database tables (categories) and construct the relationships between the tables. Off the top of my head, an initial set of tables might look something like this: DEMOGRAPHICS: age, race, household income range, education; LIFESTYLE: sedentary, moderately active, very active; NUMBER OF CHILDREN: 0, 1, 2, 3, 4, 5; SYMPTOMS: hot flashes, vaginal dryness, mood swings; headaches; TREATMENT: Premarin, estrogen only pills; vaginal suppositories; progesterone only pills; ONSET OF SYMPTOMS: <35, 35-39, 40-44, 45-49, 50-54, 55-59, 60+, never; GEOGRAPHY: East Coast, Midwest, South, West coast; DENSITY: urban, suburban, rural)

We could also import other contextual databases such as census data (again, if they are digitized, neatly organized in an excel spreadsheet, and available for use). With these tables and datasets, I could query the SYMPTOMS table with the TREATMENT table and see if there’s a relationship between the type of symptoms women had and their treatments. It might also be interesting to see if geography had anything to do with treatment plans. We could also look at whether age relates to the types of symptoms most frequently reported. These would be fairly basic searches.

But in this fantasy research project, I don’t know if I would start with the database itself. I’d want to qualitatively look at the language used to describe certain symptoms or treatments, for example. The term “hot flash” may not have been used universal. Other words such as “flushed,” “blood rush,” or “heat flusters” may have been used instead. I would have to create conditions on these words so that when “hot flash” (or any related word) is queried, all options come up. I would also consider putting quantitative conditions on symptoms (or even treatments) that could organize individual patients by the number of symptoms they experienced or the number of kinds of treatments they have received. For example, if one woman experiences vaginal dryness and headaches, she could be assigned “2” for symptoms.

One issue that these Atlantic and New York Time articles don’t explicitly discuss is about data preparation. Having worked with (and been a data entry monkey for) large-ish datasets (5,000 plus participants), I’m painfully aware of the importance of cleaning up and preparing datasets for research. Was the data entered correctly? How did you spot-check the entries? After the import process are the variables aligning correctly? Are there double entries of the same person? How do we group clusters of variables or separate variables out? What kind of predictive power do our numbers have? Do we need to collect more data? Are the variables fixed or continuous? How do we account for and properly code no values or nullified responses in certain categories?

“Fixing” data is a pain but so much of data mining and creating relational databases is hinged how “clean” the dataset is or how well prepped it is for certain types of analysis. With Filemaker and other relational datasets, it’s also to create restrictions on categories while entering individual data (rather than importing a dataset) to ensure that the data going in is “clean” and complies with range of responses you’re looking for.

One last aspect of working with databases that could be further examined is the effect of confounding variables. This semester, I’m also working on a qualitative project about morality and breastfeeding culture. The government and reputable health organizations have advocated for breastfeeding making claims about better health outcomes for children such as reduced risk for diabetes, obesity, autism, cognitive performance, etc. In Joan Wolf’s book, Is Breast Best?: Taking on the Breastfeeding Experts and the New High Stakes of Motherhood, she argues that many of these studies didn’t adequately consider confounding variables such as the mother’s prenatal health and lifestyle. For example, she argues that women who breastfeed were likely physically active and ate organic food prior to having children. This lifestyle difference alone can contribute to healthier breast milk and predict the child’s strong likelihood of being active, therefore preventing obesity and diabetes.

With all research methods, it’s important to consider their strengths, limitations, and hidden assumptions. Regarding quantitative methods and using relational databases, I’m still stuck on viewing them for scientific and social scientific research. I’m curious to see more examples of how it can be used in the humanities considering its strong tradition to not use quantitative methods.

YJP808’s photostream

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DSC03573DSC03563DSC03561DSC03558DSC03555DSC03547YJP808’s photostream on Flickr. London and Paris 2012

I’ve used Creative Commons photos from flickr a handful of times but never thought to contribute my own. Perhaps it’s because I have limited time and choose to spend it writing than uploading photos; but upon thinking about it further I realize I also don’t fully understand what it means to share creative and intellectual work.
Lawrence Lessig’s Free Culture offers insight on how the Internet changed how culture is created and shared. He argues that content and culture is increasingly “owned” with minimal questioning. Also, the access to use “culture” perpetuates hierarchies:
To build upon or critique the culture around us one must ask, Oliver Twist-like, for permission first. Permission is, of course, often granted – but it is not often granted to the critical or the independent. We have built a kind of cultural nobility; those within the noble class live easily; those outside it don’t.
I’m curious to know more about the relationships between the Internet, copyrights, permissions, and Creative Commons. As a future scholar and hopeful writer, I want to know how these laws impact my work, ability to publish, and how I protect (to varying degrees) what I put out there.