While curating Cradling Creativity in Philadelphia, we had the pleasure to virtually connect with Bethany Johnson, MPhil, MA and Margaret M. Quinlan, PhD, two professors at UNC Charlotte. They graciously shared with us their research on infertility and communication. What struck us even moreso was how they were personally touched by infertility – through friendship. We want to share their story as it sheds light on both the impact of infertility on scholarship and teaching but also on the importance of friendship and support.  — The ART of Infertility

By Bethany Johnson, MPhil, MA  and  Margaret M. Quinlan, PhD

Our research journey began in a hotel room on a research trip when I (Bethany) learned an IVF cycle might have failed (they were ultimately able to freeze two embryos). I was in my third year of failed treatments then. It was a horrible morning—they called while I was in the shower at 7:38 a.m. I remember the exact time because the embryologist left a message saying “I really don’t like to leave messages on people’s voicemail,” yet I was not informed when I could expect a call, and the office wouldn’t open until 9 a.m., so there was no one for me to call back. I felt powerless, devastated and angry.

Meanwhile, Maggie was so upset for me—she asked if I wanted to just go home instead of completing our research trip, but I was desperate for something else to concentrate on. Later she told me she spent the day pulling her sweater over her expanding belly, and avoiding eye contact just in case anyone asked her about her pregnancy. She also told me later she never could have stayed and worked—she would have gotten in her car to go home and grieve. I felt so out of control that the only thing that anchored me was focusing on something else. I was so thankful she was there with me and didn’t push for us to go home.

It wasn’t the first time she was there for me in my treatment journey. Previously, she brought me a beautiful baby blanket as a gift when we got a dog—a gift I never thought I’d have a reason to receive. Then when I needed an outpatient surgery and my husband was forced to be out of town, she picked me up and drove me to the clinic, waited through the procedure, drove me to a hotel and tucked me in with meds and treats afterward, since my house wasn’t habitable that day. (It was a rough season.) But the greatest gift she gave me was during that research trip. She listened while I cried and grieved, dove into the archive with me, dreamed up research conclusions, walked miles around Brooklyn while pregnant, and then, on the drive home, opened up our research future.

The magic words were these: “Well why don’t we do a study about this?”

That was four years ago. Since then, we’ve conducted three studies, published four articles, made a documentary with graduate students and worked with our participants, a graphic designer (Bo Rumley) and an artist (Alma R. Evans of Ursa Wild Design) to create treatment support cards for people in treatment. Maggie and Alma both told me they wished they had cards to give to their friends (like me), and I wished I had them to give to others. But many of our interviewees said the same thing during our first study, and that’s how we ended up reaching out to The ART of Infertility to share what emerged from our research.

Photo credit: Lynn Roberson, UNC Charlotte, Communications Director, College of Liberal Arts and Sciences

These cards eventually appeared in The ART of Infertility exhibit, along with the work of other talented artists and activists. At the opening, the cards were placed in an open mailbox, challenging viewers to imagine receiving or sending these unique messages to friends and family walking the lonely road of waiting for conception, sometimes receiving a diagnosis, and even beginning treatment or treatments. Being a part of this exhibit felt, in some ways, like the culmination of our efforts to make a difference because of my experience and the experience of so many others in our community.

Alma’s card in mailbox, The ART of Infertility. Photo credit: Maria Novotny

Through it all, I could count on the steadfastness of Maggie’s friendship, as well as the support of people we met throughout our work, and kept up relationships with after our studies concluded (when it was appropriate to speak with them again of course). For us, friendship and research always did and always will, overlap, even as medical statuses and experiences continue to shift and change.

Our Research on Infertility

Graduate students in “COMM 6011: Visual Ethnography” course. Photocredit: Lynn Roberson, UNC Charlotte, Communications Director, College of Liberal Arts and Sciences 

The graduate students really dove into the experience and wrestled with their own ability to be allies and supporters of people diagnosed with infertility or undergoing infertility treatments. As Maddy Michalik recalled, “This was my first experience with producing a documentary, and I learned so much about artful research methodologies as well as how to better communicate with individuals walking the (in)fertility path. Initially, I was struck by the varying degree to which patients shared their journey with others — some were very open and regularly updated friends and family on social media while others only told those that needed to know. This taught me that as with any health experience, individuals will cope and seek support in different ways, and as allies, we need to be mindful of how we communicate and offer support without being invasive or insensitive.”

Nathan Pope relayed, “Our hope is that the use of an artistic medium allowed for a more immersive, emotional experience for the viewer. Seeing an individual express their feelings and hearing their spoken word may create a more reflective space for the viewer, just as interviews created a reflective space for participants and the entire project created a contemplative moment for researchers.” Witnessing students learn the process of conducting research and wrestle with these issues as they raised awareness about meaningful support has been one of the most incredible results from our projects.

Part of the documentary features infertility greeting cards that are on display in The ART of Infertility exhibits, The graduate student-produced documentary, 1 in 8: Communicating (In)fertility will also be included in the traveling art exhibit. The first draft of 1 in 8: Communicating (In)fertility https://youtu.be/7z9jfZjoS04. The film was produced by: UNC Charlotte Communication Studies Masters Students/Producers including:  Desiree Bataba, Shanice Cameron, Cameron Davis, Samantha Maine, Elizabeth Medlin, Maddy Michalik, Nathan Pope, Miranda Rouse, and Olivia Sadler, and UNC Charlotte Senior Researchers: Margaret M. Quinlan & Bethany Johnson. The impact of our draft film continues to reverberate throughout the local community and beyond.

A goal of our (Maggie, Bethany and UNC Charlotte graduate students) arts-based infertility research is to prompt future research which deepens our understanding of (in)fertility diagnosis, treatment, and support for patients. We are grateful to be included in The ART of Infertility exhibits and look forward to future collaboration.

More On Our Research on Infertility

Johnson, B., Quinlan, M. M., & Myers, J. (2017). Commerce, industry, and security: Biomedicalization theory and the use of metaphor to describe practitioner-patient communication within Fertility, Inc. Women’s Reproductive Health, 4, 89-105.

Johnson, B., Quinlan, M. M., & Evans, A. (2017).  Research based Infertility greeting cards in traveling art exhibit. The ART of Infertility- Infertility Art Exhibit, Art Therapy. http://www.artofinfertility.org/

Johnson, B., & Quinlan, M. M. (2017, Nov). Race, racism and infertility. Racism in Science [series]. Vital: On the Human Side of Health [Sponsored by the National Endowment for the Humanities]. Retrieved from https://the-vital.com/2017/11/10/racism-infertility/           

Johnson, B., & Quinlan, M. M. (2017, Nov). Infertility: Resources for family, friends, and practitioners. Racism in Science [series]. Vital: On the Human Side of Health [Sponsored by the National Endowment for the Humanities] Retrieved from https://the-vital.com/infertility-resources/

Johnson, B., & Quinlan, M. M. (2017). Insiders and outsiders and insider(s) again in the (in)fertility world. Health Communication, 32, 381-385.

Johnson, B., Quinlan, M. M., & Marsh, J. S. (2017). Telenursing and nurse-patient communication within Fertility, Inc. Journal of Holistic Nursing.

Johnson, B., & Quinlan, M. M. (2016). For her own good: The expert-woman dynamic and the body politics of REI treatment. Women & Language, 39, 127-131.

As part of our series on alternative success stories of infertility, we’re sharing a guest post from Elyse Ash. Elyse and her husband, Brad, pooled their talents to find a unique way to process the pain of infertility. Thanks, Elyse, for sharing your story!

Anyone who has gone through infertility knows how tough it can be on a marriage. And not “I-never-get-to-use-the-remote-control” tough…

It took my husband Brad and me two full years to get on the same page regarding our infertility diagnosis and course of action. But before that, there were two years of arguments about finances, crying after sex and discussing the positives and pitfalls of every medical option we faced.

And while we were still traveling, laughing, canoeing and hosting parties, the frenetic, fearful energy of our infertility was always right below the surface. At any given moment I could spontaneously burst into tears. We both lived in constant fear of pregnancy announcements from close friends…me, because I couldn’t hide my heartbreak anymore and Brad, because I couldn’t hide my heartbreak anymore and was prone to public sobbing.

We were stuck in this weird dance. I was mad at the world for not giving me what I wanted. Brad was mad at me for being “ungrateful” and dissatisfied with our already-undeniably-awesome life.

Kind of makes you miss the days of fighting over dirty dishes and taking out the trash.

But then things changed…and pretty quickly, too…

In fact, I can pinpoint the exact moment things started getting better between us…and it wasn’t when we saw a positive pregnancy test. It was when we decided to take the pain, anxiety and fear we were both experiencing individually and turn it into something productive and cathartic that we could do together. It was when we decided to combine our professional skills, collaborate and build something that could really help others. It was when we decided to launch Fruitful Fertility.

Photo by Aaron Lavinsky and Jerry Holt for the Star Tribune

I had the idea for Fruitful in the summer of 2016 after our first round of IVF failed. I was heartbroken, shocked and devastated…but I was also frustrated with how my dearest friends and family struggled to emotionally support me in a meaningful way. To be fair, they tried! Lord knows they tried. But the only people who made me feel better in any tangible way were friends who had BEEN THERE quite literally…who knew the rules of the IVF game and knew which questions to ask. It was then I realized that what I really wanted was a fertility mentor who understood what I was going through but who wasn’t trying to get pregnant anymore. Someone who was already on the other side and could offer me the perspective and wisdom I so desperately lacked.

Brad loved the concept, and as a web developer he got right to work helping me design the Fruitful website and matching process. We needed to create a platform to help best match fertility mentors with mentees based on a series of inputs: location, age, diagnosis, values, interests. We worked late. We pushed each other. We sketched out email flows. We registered for an LLC. We had no idea what we were doing, yet together we created this thing and poured all of our creativity and energy into it. We cared for it…nurtured it…loved it. It wasn’t just like a baby…but it also wasn’t NOT like a baby…

And now? Fruitful is growing! It’s been incredible to see our tiny user base flourish into a real community of fertility warriors; a mix of women and men who’ve been through this battle or are actively going through it. It’s been humbling and rewarding to watch, and it’s brought us together in a way that we never expected. Through this project, we could channel the anxiety and fear we felt around our own story and put it into something helpful and meaningful for others.

On a personal note, things have changed a lot us since we launched Fruitful in April 2017. We had our first Frozen Embryo Transfer in late June 2017, which was successful; we’re now due with our first kiddo in March 2018.

Our next challenge? Pursuing our full-time jobs while continuing to help others through Fruitful and taking care of a baby. And while I’m not quite sure how this will look logistically, I have complete faith that now Brad and I can get through anything.

—

Contact: Elizabeth Walker                                FOR IMMEDIATE RELEASE
Phone: 517.262.3662
Email: elizabeth@artofinfertility.org

“Works and Wonders: Art Inspired by the Journey of Infertility” Announces Calendar of Events

International Infertility Organization Partners with Utah Infertility Resource Center to Raise Awareness Around Reproductive Loss

Ann Arbor, Mich. – Jan. 16, 2018 – The ART of Infertility, a national arts organization, announces its collaboration with the Utah Infertility Resource Center (UIRC) to present “Works and Wonders: Art Inspired by the Journey of Infertility”, which features a four-week long exhibit, Arches in Perspective: The ART of Infertility in Utah. This infertility-themed art exhibit will display original works created by Utahns, as well as national and international artists, at Art Access Gallery and Urban Arts Gallery in downtown Salt Lake City from February 16^th through March 16^th, 2018. The exhibit at both locations is free and open to the public.

Over 65,000 people in Utah are living with infertility. In Utah, Camille Hawkins, LCSW founder and executive director of the Utah Infertility Resource Center (UIRC), works to raise awareness and provide support to many diagnosed with the disease. “I learned about The ART of Infertility during a trip to Washington D.C. advocating for family-building legislation to congressional leaders on behalf of Utah’s infertility community. Like me, I was struck how they also drew from their personal experiences with infertility to create a non-profit organization providing support for reproductive loss around the world. Talking to them and learning how the organization travels around organizing and hosting infertility art exhibitions, I knew that my hometown needed to bring this international arts organization to Utah to build community awareness around this family-building health issue.”

In partnership with UIRC, The ART of Infertility is pairing professional artists with infertility patients to collaborate on artwork which will be displayed in Arches in Perspective and then auctioned off during UIRC’s Spring Fundraising Gala, Works and Wonders, on March 16th. The gala will include an art reception with select works, a three-course meal, and a silent auction to raise awareness and funds for infertility support in the greater Utah community.

The ART of Infertility is still accepting infertility-inspired pieces of art for display at the two galleries in downtown Salt Lake City. You do not need to be directly impacted by infertility or reproductive loss to be a contributing artist. Pieces that interpret, reflect, and/or meditate on the experience of challenges to fertility and family-building are welcomed. You can submit these pieces by filling out the form at http://bit.ly/ArtworkUT2018

The ART of Infertility and UIRC are welcoming sponsors and community partners for this event. Current partners include Utah Infertility Resource Center, The ART of Infertility, The Falls Event Center, Urban Arts Gallery, Salt Lake City Arts Council, Art Access, Utah Arts Alliance, EMD Serono, Fruitful Fertility, One More Shot, The Hope for Fertility Foundation, Reproductive Care Center, Utah Division of Arts & Museums, Utah Fertility Center, Baby Quest Foundation, and Waiting For Babies podcast. For more information, contact us at info@artofinfertility.org or call (517) 262-3662.

“Works and Wonders: Art Inspired by the Journey of Infertility” Calendar of Events.

“Art for Infertility Workshop”
Family Building Art Workshop led by professional Artist, Emily Bagley
January 20, 2018
An art therapy workshop where those who struggle with infertility can connect and heal through art, guided by local artist Emily Bagley. The workshop will be held at Art Access, last 4 hours, and include several project options: a mixed media collage, a memory box, or blackout poetry. Attendees will be able to contribute to a community project as well.
Register at: https://uirchealingthroughart.eventbrite.com

“One More Shot”
Film Screening and Panel on the Humanities and Infertility
February 15, 2018
This free event will be held at Urban Arts Gallery and will feature filmmakers Noah Moskin and Maya Grobel as well as others using the arts for infertility expression and awareness.
Reserve your seat at: http://bit.ly/onemoreshotutah

“Arches in Perspective: The ART of Infertility in Utah”
Opening Night Receptions during Salt Lake City Gallery Stroll
February 16, 2018
A free opening night reception will take place at both galleries as part of the Salt Lake City Gallery Stroll.
More information at: http://bit.ly/ArchesUTAH

“Works & Wonders of ART: Creating a Unique Masterpiece”
Closing Night Gala
March 16, 2018
Cocktail reception and artwork viewing hour, silent auction, three-course-meal, and emcee Frankie from 97.1 zht at the Falls Event Center. Tickets, tables, and sponsorships available for purchase at: http://bit.ly/worksandwonders

About The ART of Infertility

The ART of Infertility is a national arts organization. Founded in 2014, Elizabeth Walker and Maria Novotny, Ph.D. curate innovative and emotionally provoking art exhibits to portray the realities, pains and joys of living with IF. We also design engaging curriculums to host art and writing workshops. We plan educational, outreach events. We advocate for infertility rights. Most of all, we provide support for those living in the shadows of infertility. Through art, we break the silence around reproductive grief and push back against common misconceptions. We invite you to join us in our fight to make infertility visible. To learn more, visit http://www.artofinfertility.org/.

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by Maya Grobel

Several years ago, Elizabeth Walker  (founder and co-director of The ART of Infertility) came to my house to interview my husband Noah and me for a project she was working on. After four plus years of a tumultuous journey to parenthood that involved every possible assisted reproductive technology in the book (clomid, laparoscopic surgery, IUIs, IVF, IVF with donor eggs), we were tentatively pregnant with a donated embryo that (thankfully) resulted in our daughter.

At the time, Noah and I were working on a project of our own. It was a documentary film about infertility, our own path to parenthood, and the making of modern families. None of us in the room knew that in our hearts we were actually pursuing a common goal— expressing our feelings about infertility through art, in order to process our experience, decrease stigma and shame around the disease of infertility, and normalize how different families are created.

Noah and Maya at home during their interview with Elizabeth in December of 2014.

Cut to four years later. Noah and I have an incredible daughter nearing three years-old, and a feature-length film called One More Shot that was recently released on Netflix, iTunes, Amazon, and Vimeo on Demand. And Elizabeth, along with co-director Maria Novotny, has created a brilliant non-profit arts organization to support those struggling to create a family by showcasing artwork done by infertility patients. The exhibits by ART of IF aim to build awareness of infertility and educate the world about it, “portraying the realities, pains and joys of living with IF.”

When Elizabeth asked us to show our film at one of the ART of IF exhibits in Seattle, we were thrilled, and it became immediately evident that the collaboration between One More Shot and The ART of Infertility was a perfect match.

The screening in Seattle accompanied the exhibit SEA-ART-HEAL, held at the Seattle Center in April of 2017, and included a Q&A.

Our film was our entry into a world we knew nothing about. It chronicles our journey and explores the complex relational, emotional, physical, financial, medical, and ethical issues that accompany assisted reproduction. It’s a very personal glimpse into what infertility really looks like. In an attempt to find community around the shame and silence surrounding infertility, Noah and I interviewed others who had experienced similar struggles and found alternative ways to construct their families. This allowed us to meet and have in-depth conversations with people who shared what it was like to experience multiple pregnancy losses, let go of a genetic connection to their child, or watch someone else give birth to their child. It was eye opening for us, and also hopeful.  And when each baby-making intervention we tried failed, we knew that somehow, if we were open to all possibilities, and had high enough limits on our credit cards, we’d find a way to be parents.

As a psychotherapist now practicing in the realm of infertility, I can clearly see that this film, in a lot of ways, is our trauma narrative. Producing the film together, while stressful at times, allowed Noah and me to have a different creative focus when we were completely isolated and stranded on Infertility Island. While we couldn’t make a baby, we could make a movie. So we did. And through that we were able to analyze and understand our experiences, create something tangible and visual about it, and connect to this isolated but incredibly powerful and supportive community through a shared narrative. As Noah likes to say, we were able to make lemonade out of some sour-ass lemons. It was cathartic and I believe it also helped us heal our hearts at a time when they were very broken. Now we hope that it can help others heal too.

Our story really is a version of that of so many other people. And by sharing our story through our film, we know we can give a voice to this pain and connect to the hearts of so many people who struggle to make a baby. Sharing through visual story-telling was our medium. The ART of IF displays a variety of other artistic work that allows the viewer to see it from other personal points of view.  And through understanding, there is a sense of connection and hope.

So when Elizabeth asked us to join her and The ART of IF in Salt Lake City, Utah— well, it was a no-brainer. I just have to figure out where to trade in my California girl flip-flops for some snow boots.

A screening of the film One More Shot and panel discussion on using the humanities to cope with infertility will be held at Urban Arts Gallery in Salt Lake City at 6 pm MST on February 15th. This event, an extension of the exhibit, Arches in Perspective: The ART of Infertility in Utah, is free and open to the public. Reserve your space at http://bit.ly/onemoreshotutah.

Not near Salt Lake City? One More Shot is now available on Netflix, iTunes, Vimeo on Demand, and Amazon. The ART of Infertility will have events in Los Angeles, Michigan, Wisconsin, and Chicago later this year. Check out our full schedule for events near you.  

Today we hear from Camille Hawkins, Executive Director of the Utah Infertility Resource Center. We’re excited to be collaborating with Camille to bring The ART of Infertility to Utah next month for an exhibit and programming beginning mid-February and running through mid-March.Thanks, Camille, for sharing your story!

The first time I saw the positive line on a pregnancy test I was in disbelief. Five years of planning sex around ovulation, temperature taking, pills, my husband leaving semen samples in the awkward room at the clinic, injections, undressing from the waist down, putting my cold feet in stirrups, vaginal ultrasounds and suppositories, surgeries. Having grown up in the extremely family-oriented culture of Utah, there was nothing I wanted more than to have a baby and be a mom. We had finally made it. And then it ended.

One of the hardest things about miscarrying my beautiful embryo(s) was accepting that there was nothing more I could do to increase my chances of getting (and staying) pregnant again. All of the things I had the power to do had already been done. I saved my money religiously. I ate healthy. I followed the instructions for the daily cocktail of injections. I never put a laptop on my lap or got in a hot tub. I meditated and prayed. Lots.

Infertility sucks. That’s all there is to it. What’s more, people around me often didn’t understand the almost unbearable emotional pain I was dealing with. I tried sharing my story with others, but my thoughts, feelings, and experiences were frequently invalidated by well-meaning friends, family, and colleagues. I was so desperate, depressed, and isolated. Most days it felt that the only hope in life was the idea that maybe, just maybe, a miracle would happen that would finally allow me to be a mom. The day I went to work as a counselor and met with my client who had received an abortion at the same time I was miscarrying was the day I realized I could not do this alone anymore.

I needed real connection. I needed expression. I needed to know that I wasn’t alone. A black hole was pulling me in. I desperately needed someone or something to pull me out. I started to look and found nothing. I started painting and journaling to release and communicate the pain, but I still had no one on the outside to say, “Yes, this is awful. I know your pain. I went through it too. I was on that roller coaster.”

In March of 2014 I started a support group in my living room. That support group was the seed that led to the Utah Infertility Resource Center (UIRC), a nonprofit organization serving thousands of Utahns who are facing infertility. This is done through no and low-cost infertility counseling, in-person support groups, online support, infertility awareness, informational consultations, and educational events that bring our community together. The number of infertility community members that UIRC serves continues to grow, and in Spring 2018, we will offer yet another meaningful program called “Works and Wonders: Art Inspired by the Journey of Infertility.”

I met Elizabeth and Maria during a trip I took to Washington D.C. to advocate to congressional leaders on behalf of Utah’s infertility community. I learned about their personal stories and experiences with infertility and how they, like me, were using art and writing as creative expressions to make visible the pain of infertility. They told me how they too created a non-profit organization, The ART of Infertility. This organization collects art and writing reflective of infertility and reproductive loss and curates provoking and empowering exhibits about infertility so as to build community support and provide greater education and awareness. After talking to them, I knew that my hometown needed to host one of their exhibits.

I needed real connection. I needed expression. I needed to know that I wasn’t alone.

Two years later, URIC is partnering with The ART of Infertility to host a series of month-long programming, titled “Works and Wonders: Art Inspired by the Journey of Infertility”, running from Feb 16, 2018 – Mar 16, 2018. These innovative and emotionally powerful events will consist of:

• “Arches in Perspective: The ART of Infertility in Utah”, an infertility-themed art exhibit with original works at Art Access Gallery and Urban Arts Gallery in downtown Salt Lake City organized and curated by The ART of Infertility.
• A series of community art therapy workshops, January 20 at Art Access with therapist Emily Bagley, and at each of our six monthly support groups throughout the state.
• A film screening of the documentary, One More Shot, with a panel discussing using the humanities to cope with infertility on February 15 at Urban Arts Gallery.
• An opening reception at each gallery on February 16 in conjunction with the SLC Gallery Stroll.
• And, a closing night gala at The Falls Event Center on March 16 at 6 pm.

We have already held one art therapy workshop for our clients in preparation for the exhibit and the process and outcomes were heart wrenching, touching, and profound. One of the clients who attended said, “This workshop really brought out a lot of feelings I didn’t know I had. I was able to express those feelings in a productive way, and was able to have something to remind me.” I watched each person in this workshop, and learned all it takes to create art around infertility is a willingness to express and a medium to express with. The stories of each of our clients are already beautiful and healing. It just takes a willingness to transfer it from our brains and bodies to something outside ourselves.

I know there is nothing special about my own infertility story. In fact, as Executive Director of UIRC, I now hear the same story over and over again. All Day. Every day. The good news is that because of UIRC, no one in Utah ever has to go through this journey alone ever again. I, along with Maria and Elizabeth, hope “Works and Wonders” will provide even more opportunities for Utahns struggling with infertility to get the education, connections, and opportunities for expression that I know they so desperately need. I can’t wait for you to join us!

We are still accepting artwork for this exhibit. Enter yours at http://bit.ly/ArtworkUT2018.

Maria, Elizabeth, and Camille at Infertility Advocacy Day in 2016.