An intro to our Michigan State University (MSU) Undergraduate Research Intern, Juliette Givhan, and her take on our recent Reproductive Writes workshop at MSU. 

Hello,

My name is Juliette Givhan and I’m a new addition to The ART of Infertility team. I joined Elizabeth, Maria, and Robin with the goal of helping them organize, analyze, procure, and ultimately anthologize the creative materials surrounding infertility and reproductive rights generated for this project.

I study at Michigan State University where I’m near the end of the pursuit of an English degree with a concentration in creative writing and a minor in African American and African Studies. I’m a poet and I write from my individual experience as a Black American. My writing has been shaped by this focus and I’ve come to realize that this has often involved an erasure of my experiences as a woman. I find that where I am proud to be Black and have always felt a strong need to express my Blackness, I rarely uplift and take pride in my identity as a woman.

When I think of what it means to be a woman I think of the stereotypes of femininity sculpted by patriarchal influences: the mother of many children figure, the stay at home domestic goddess figure, etc. Since I have never fit into any of these roles I have rarely thought about or processed the reality of my own identity as a female, one defined by my own experiences. My goal with this project, then, is to embrace the fact that my actions- the daily experiences that collect as my identity- need to also have a stage on which to be addressed. I think working on The ART of Infertility Project is going to offer the space for my writing and thinking to take this first step.

Infertility as a topic of research is something that I am interested in learning more about because of how much I don’t know. I have had connections with IF before in the women on one side of my family, who have repeatedly experienced complications with pregnancies and conceiving, but I don’t know the facts or figures. I don’t know the emotional toll IF has on people, or how to accept that a reality might exist in my own life that means one day I might not be able to have the children that I don’t even know if I want.

I find how this project uses art to express these difficult, diverse, and complex issues to be extremely comforting. Art is the medium I have personally used to express myself, so I believe in its power of expression and healing. I’m looking forward to helping create an anthology of this projects work because a tangible and accessible collection could potentially connect so many people who could benefit from this community of support.

Participants at Reproductive Writes, February 28 at Michigan State University in East Lansing, MI

The Reproductive Writes workshop that took place in the LookOut! Gallery on Michigan State University’s campus was the first time I’ve been to a workshop that addressed the issue of reproductive rights. When I started working on The ART of Infertility Project I knew very little about reproductive rights because it was not something that I ever heard talked about. Our society censors information about the human body, especially the female body, and this gap of information has largely left me ignorant to the issues that exist and affect the people of this country. I came to the event excited to deconstruct my own ignorance in these topics and nervous at admit to how much I didn’t know.

We started the evening with a question: what does reproductive rights mean to you? After having time to reflect those who chose were able to share their definitions. This moment was particularly interesting for me because no two definitions were the same, though parallels certainly existed. One woman defined reproductive rights as wanting to end the stigmatism she felt from outsiders who expected her to be pregnant because of her position as someone’s wife. Another’s definition was having the right to choose whether to have a child and letting that option belong to the individual it affected. My own definition of reproductive rights was having access to affordable healthcare to support a fetus and later a child. I realized that as a broke college student, my definition of reproductive rights was bound to be different than someone who was married or someone who was diagnosed as infertile.

Realizing that the definition of reproductive rights was fluid was as empowering as it was obvious… after I’d given it some thought. Though the room only held about fifteen people, several diverse backgrounds were represented. There were undergraduate students new to the conversation like myself, a graduate student, a nurse familiar with the medical side of working with IF, women from the MSU and Lansing community, even a man who used a penis shaped poem to portray his interpretation of reproductive rights. Each voice had its own story to tell and interpretation to make and I appreciated hearing all of them.

Having had some time to reflect on the workshop I think my main take away was that more spaces like these need to exist, where people from diverse backgrounds can come together and talk about the realities that exist for them. Being in a space to talk about these things and make poetry and have discussion was a relief after so many years of silence. I think more people need to have the chance of experiencing something like Reproductive Writes because spreading awareness of issues is the best way, in my opinion, to end ignorance.

Today’s blog post is from J. Clyde Wills. He recently visited our exhibit, “Reflections of Reproductive Loss & Access to Care,” at University of Wisconsin, Oshkosh and contacted us afterward to share some of his story with us.

While infertility affects men and women equally, we don’t as often hear the perspectives of men dealing with an infertility diagnosis. Our mission is to share stories, especially under-represented stories, through the creative expression of art and writing, making infertility visible. That’s why we invited J. Clyde to share his story with you today. It’s also why we feel it’s important to incorporate specific programming around men’s stories, and the ways that infertility impacts men’s health, during Men’s Health Month each June.

This year, we’re again partnering wiith Dr. Paul Turek of The Turek Clinics to present an art exhibit and programming in Los Angeles from June 9 – 30. We hope you’ll check out our event landing page for initial information on “Reimagining Reproduction: The ART of Infertility in Los Angeles” and submit your artwork for consideration via our call for art.

We will have a special focus on highlighting the artwork and stories of men, as well as single parents by choice, those in the LGBTQ+ community, and other under-represented individuals and groups who are dealing with infertility or must use assisted reproductive technologies to help them build their families.

These perspectives are so valuable. Thanks, J. Clyde Wills, for sharing yours with us today!

Pain, Regret, and Blood: A Journey in Infertility

By J. Clyde Wills

I can’t talk about it without crying: IUI, IVF and five failed adoptions. We were trying egg donation before our marriage fell apart. I suppose I am still crying.

Kate* and I started the old fashioned way, which is what all newly married couples do whether they want babies or not. But we did. No one told me making babies would be so hard. In fact, high school health class taught me the opposite. When I was younger I never considered not using protection because even a romantic gesture could cause pregnancy.

Our first stop in fertility was at the Yale Fertility Center. We were told was one of the best fertility centers in the country. The first round of IUI, intrauterine insemination, yielded no results, so we tried IVF for the next round. Insurance only covered the first one so this round of in vitro fertilization was on us. During the whole process my role felt so secondary. It was my job to go into a little room at the doctor’s office containing the most regressive pornography I had ever seen, make my contribution into a sterilized container, and then get out of the way. After that it was my job to administer the shots.

I felt so helpless. I wanted to do more but there was nothing else I could do but give support and love. So I did that. Truthfully Kate was strong enough to give herself the shots.

Our hopes soared as Kate’s blood tests came back positive. The news that we were pregnant was intoxicating which made Kate’s daily regimen of shots easier to bear. Everyday I administered injections into her tummy but the discomfort became worth it. We were having a baby.

Our hopes changed the day Kate received her first ultrasound. The doctor passed the wand over her uterus but there was nothing. It was not just that there was no heartbeat but nothing at all. Hormones levels clearly read pregnancy but her uterus was empty. The pregnancy was ectopic and needed to be ended. After months of injections Kate now had to be treated with methotrexate, a drug normally used in chemotherapy, to end the pregnancy we had dreamed of.

We took a long break after that. Ending the pregnancy was too devastating. So we decided to try adoption. I wish someone had told the cruel reality of domestic adoption. I don’t know what I was expecting but I wasn’t expecting this. We chose Lutheran Social Ministries as our agency. I was making a career as a Lutheran minister so it made sense to us. The first two adoptions failed quickly. Our agency connected us to birth mothers and after the emotional journey of meeting them and filling out forms the birth mothers chose another couple. That is how the system works. Potential adoptive parents must woo and court birth mothers who have the option to accept or reject and can always later change their minds.

Then we got the call. A woman was giving birth on the other side of the state. She was choosing an adoption plan for her baby so I left work and we drove to the hospital stopping at Baby’s R’ Us along the way to fill the car with everything we needed. After a long day we came home with Jacob whom we named after my father. For five days it was the kind of bliss that comes with being a new parent. We lived in 24-hour shifts as we fed him, changed him and loved him. This is where I start crying.

Photo by Aditya Romansa

After the fifth day we got the call. Jacob’s birth mother had changed her mind and a social worker would be coming to our house to take him away. That is also how the system works. Until she signs the surrender documents a birth mother has 90 days to have a change of heart. We would later learn that birth mom had used the adoption process to manipulate her own parents into keeping the baby. Giving Jacob away on that day may have been the worst day of my life. It felt no less like a piece of me had been amputated.

After Jacob, Kate and I took matters into our own hands, abandoned Lutheran Social Ministries and pursued private adoption. There is a whole cottage industry of adoption attorneys and we found one in Jacksonville, FL. It is more expensive but the success rate is higher. This is when we met Andrea.

Andrea already had five successful pregnancies. Her first child was adopted by her brother and her other four babies were adopted by couples like us. This was number six. Andrea denied that she was selling her babies to fund her addiction to crack cocaine. But we didn’t care. We just wanted a child. After months of regular visits to Florida and writing lots of checks Andrea disappeared. She went off the radar for a long time with no one, including her family and the attorney, having any idea where she was.

Andrea re-emerged when it was time to give birth and informed us she was keeping the baby. It was her right. Kate and I had no claim to the child, even after it was admitted that Andrea never had any intention of giving up her child and only wanted someone to pay her bills while she was pregnant. The sad part is Andrea did not get to keep her daughter either. Because of her continued abuse of drugs Andrea’s little girl was placed with a family member. Kate and I were never considered.

One more failed adoption after that and Kate and I quit the adoption game for good. We decided to try egg donation. The process is much the same as IUI and IVF with it’s many visits to doctors and shots in the tummy with hormones. The only difference is the egg is donated through any one of a variety of organizations. We scrolled through profiles like it was an online dating site until we found a match that made sense with a price we could handle. A suitable donor was selected but before the process could start our marriage disintegrated.

The end of our marriage is its own tragedy. It could be best equated to a scene from the 1973 film the Long Goodbye where, in order to intimidate his enemies, a gangster smashes a Coke bottle across his own lover’s face right after saying to her, “You are the single most important person in my life.” In truth there was never any violence in our marriage but the end was no less painful. I died that day.

I look at The ART of Infertility exhibit and see my life unfolding before me. I see the many sculptures built from fertility medications and remember every puncture into Kate’s smooth, soft skin. The crib containing $12,000 of medications is specifically heartbreaking. I recognize all of them because it was the contents of our pantry for years. It also reminded me of the crib and stroller that collected dust in a room that was never used. I still have a red biohazard container holding an entire regimen of soiled needles. I should have gotten rid of it years ago but haven’t done it. It is a visceral reminder represented in pain, regret and blood. I can’t let it go.

There is no trace of kumbaya in this story. Not everyone gets a happy ending. Not everyone gets a child or a family, regardless of effort or money spent. Not all dreams come true.

But I won’t allow my story to end this way. It’s not fair to me or to you. I find healing seeing this story expressed through art. Their story is my story and it comforts me. It also reminds me that in grief it is healthy to give my soul a voice and the permission for it to cry and sing. As loss is released, my burdens grow wings and fly away leaving me on earth clutching tightly onto the last of joy. If I am allowed one last prayer it is to see that joy blossom into redemption.

*Names have been changed to protect privacy.

Last week, we held our Reproductive Writes workshop at University of Wisconsin Oshkosh. Our marketing and communications intern, Kristen Mahan, attended the event and shares a reflection on that experience with us today. On Wednesday, starting at 7 pm, we’ll hold our Reproductive Writes workshop at Michigan State University. We have some spots left and would love to see you there. You can find out more and reserve your seat at http://bit.ly/reprowritesmsu2018tickets

Reflections on Reproductive Writes
by Kristen Mahan

As a new ART of Infertility marketing intern, attending the Reproductive Writes workshop at the University of Wisconsin Oshkosh was extremely eye-opening. I have been working with The ART of Infertility for over two months, but I was never able to see the nonprofit in action. Viewing and reading the captions of the artwork from infertility patients was saddening and it gave me a different perspective of eventually having kids. I brought my two roommates to the event and we all agreed this is something that has barely crossed our minds. We realized as young women, that we are so worried about taking the pill or getting an IUD and trying not to get pregnant, that in all reality there’s a high chance that when we finally do want kids, it may not happen.

Maria speaks to a group at Reproductive Writes, University of Wisconsin Oshkosh on February 21, 2018.

I consider myself to be someone who is fairly up-to-date on political issues going on in our country. However, I had barely considered the impact of the regulations regarding infertility. Listening to a male speak out at the event on his infertility journey of paying out of pocket for five failed IVF treatments was astonishing. For people suffering from infertility and then not being able to afford treatments with no help from the government is heartbreaking.

Attending The ART of Infertility’s Reproductive Writes event pushed me to step outside of my comfort zone and confirmed that my energy being put into this organization is for an amazing cause for an agonizing disability that can affect anyone.

A Guest Post by Natascha Dea

I met the love of my life at 37—well past the age most doctors want you to be when trying to have your first baby. When our own attempts at having a baby culminated in multiple miscarriages, and countless failed pregnancy tests, we spoke with my ob-gyn and moved into the seemingly frightening world of fertility treatments.

My work, my passion, has always been in exploring female sexuality and strength through photography. With the infertility treatments, I found myself in such a weird new place… a domestic limbo that felt wildly out of place with my art… two years of infertility treatments increasing and decreasing hormones, timed medications, and life on standby as doctors appointments and procedures changed moment to moment because of hormone levels; four years of unsuccessful pregnancies. I felt stalled in my creative work and I worried that by sharing what I was going through I’d lose clients and supporters of my work.

I started seeing a therapist to help with the ups and downs of the treatment cycles, hormones, and miscarriages, and she and I talked about this a lot. At this point, my love & I’d shared our struggle with only a handful of people. My therapist convinced me to start talking about what we are going through, and to start writing about it. If I wasn’t making work that felt like “my work” then at least I’d be doing something creative.

And so I started sharing with family and friends and writing a little bit every day. Slowly, by sharing with people we love and trust and by writing, I found my voice. I began sharing aspects of our journey publicly on my social media. Our Reproductive Endocrinologist, Dr. Eve Feinberg who wrote the Foreword for Waiting, saw some of my photographs from our journey on Instagram and started telling me that she loved my photographs and that she thought they’d make a great book. Her confidence in this made me look at these seemingly disparate photographs as a possible series.  When I viewed them side by side, I started to see our story.

If you’ve gone through infertility treatments, you are familiar with Waiting. You wait for ultrasounds and lab work. You wait for visits with your doctor. You wait for refrigerated boxes filled with medications to arrive at your door. You wait for baseline test results, and for the phone call that tells you to begin your new cycle’s protocol. If your cycle is interrupted for any reason, you wait to begin it again. At the end of an infertility treatment, you wait for a pregnancy test.

An image from “Waiting” by Natascha Dea

Each month, in between treatment rounds, you wait and hope that you might get pregnant naturally after tracking every little bit of your monthly cycle.

It’s overwhelming, consuming, and can be an incredibly isolating experience. I do not think Waiting would have been born without the initial encouragement of my therapist and doctor. I was exhausted and blocked creatively and emotionally. There are studies that show that the diagnosis of infertility is as stressful as the diagnosis of cancer. And yet, when an individual or couple is diagnosed with infertility, they largely process and handle it alone. The subjects of infertility and reproductive care are still considered taboo by a huge swath of society; so many people battle infertility and go through infertility treatments quietly and without the support of their families, friends, and colleagues. And while I know that the relationship between a patient and doctor should be collaborative—and I am so very grateful to have that relationship now with all of my doctors—I know from previous experience that is rarely the case. So how do we better support each other?

I believe the first step is sharing our stories. The more we step outside our comfort zones—and maybe even the dictates of society—and talk about our experiences with infertility, infertility treatments, pregnancy, miscarriage, reproductive care, and family building we normalize these subjects. We know that infertility is experienced by 1 in 8 couples in the US. When 1 in 8 people you know is experiencing infertility, when every person on earth was born as a result of an egg and sperm creating an embryo, why is it still so taboo a discussion?

It’s only recently that I have really understood that my art, my work, my passion, is in women’s stories and specifically in examining those aspects of being a woman that are considered taboo. I’ve been hugely inspired by the women and artists who are sharing their stories around infertility. But there is still so much that goes unsaid due to lack of support. One of those unsaid things is that while we know it is stressful, it is also expensive to battle infertility. Not everyone can afford to undergo infertility treatments, or to “just adopt” as is so often the response when the subject of infertility arises. Family building, when you cannot get pregnant or sustain a pregnancy naturally, is incredibly expensive. How do you battle infertility when every part of you is emotionally, physically, or financially stressed? And that’s why I decided to have a portion of the proceeds from the sales of Waiting support the work of the Kevin J. Lederer Life Foundation, an organization that helps to increase access to infertility education and family building, through grants for infertility treatments and adoption.

Sharing our stories changes the world. Art knocks down walls.

Waiting is very much a visual study of one woman’s experience, my own; but my story is not unique. I know that as I talk with more people about our struggle and as I witness our family, friends, and colleagues begin to share theirs. I hope Waiting helps those who haven’t gone through this struggle to better understand and support those battling infertility. And I hope it inspires those, women and men, individuals and couples, who are battling infertility to share their own stories.

Bio:

Natascha Dea is an American photographer whose photographs intersect fashion and art in a captivating exploration of sensuality and erotic femininity.

Natascha was born in Germany, calls New York City home, and splits her time between Venice Beach and Chicago, where she currently lives with her family. She is available for editorial, commercial, and personal portrait commissions and travels. Her work can be found hanging in private collections in four countries, has been published internationally on LENSCRATCH and L’Oeil de la Photographie, and is featured on The Quiet Front. Duncan Miller Gallery recently featured Natascha’s black and white work for sale on their special project Your Daily Photograph as Emerging and Classic photography. She is the author of Waiting, a monograph of photographs she made during two rounds of IVF, published by FortyTwo Women Press and in bookstores on March 6, 2018. Her second monograph, Natascha Dea’s Women, will be published by FortyTwo Women Press on May 1st, 2018.

Natascha is a vocal advocate for equality, reproductive rights and justice, and better access to reproductive and infertility healthcare for all. She is the founder of the Neshama Collective, a year-long creative workshop and gathering for women artists battling infertility.

She is currently preparing for her ninth round of fertility treatments. She can be reached at www.nataschadea.com or www.waitingbynataschadea.com or on Facebook, Instagram, & Twitter @nataschadea or @waitingbook.

We are thankful for all of the wonderful people that The ART of Infertility has allowed us to cross paths with. Today, we have a guest post from CJ Carman, who we first met in July of 2015 at her home in Northern California. A memoir about CJ’s infertility, parenting after adoption, and how she and her family were transformed along the way was just released. She shares some of that story with us today. Thanks, CJ!

CJ with baby Nicole

Before my husband and I got engaged, we had discussions about having children.  At first, we thought we did not want children but after several years of marriage, decided we did, in fact, want children very much.  So we set out to get pregnant and soon discovered that we were infertile.  After many tests and discussions with our physician, we decided to try infertility procedures that proved both physically and emotionally painful and that would, alas, fail to get me pregnant.  So much goes on when you are in this place.  So many comments and unsolicited advice from people who mean well, but inadvertently added to the pain.  Guilt was also a huge part of this package.  But my husband and I pretended to make peace with the fact that we would never have children. And then, we were inspired to look into adoption.

Both of us are Caucasian, but being very open to any child who needed love, we adopted an African American baby.  Adopting our daughter, Nicole, was literally the best thing that ever happened to us.  It was also the start of a journey that inspired me to write Love, Hope, and Acceptance: A Family’s Transition.  Besides the “normal” parenting challenges and the realities that come with raising a child of color, there were other opportunities to expand my way of thinking of this world in a positive way.  Living in a very diverse area, through Nicole’s activities and relationships, I was exposed to many different cultures and family lifestyles.  Nicole’s life opened many doors for me and I feel has made me a better person.

Part of Nicole’s journey was realizing that she was lesbian.  At a very young age, Nicole was more attracted to females than males and also tended to identify more with stereotypical male behaviors and dress and was labeled a “stud” in her lesbian relationships.  And while my husband and I were concerned for Nicole’s welfare, we were accepting of how she identified and expressed herself.  Little did we know that her inner angst continued into high school. You see, Nicole felt deeply that she was not a female interested in other females, but actually a male interested in females.  In other words, Nicole knew she identified as male while everyone still saw her as female.  Nicole knew she was transgender and really wanted to make physical changes so his brain’s image of who he was matched his outer appearance.  Thus began the transition from Nicole to Cole. But it was a transition for the whole family.  One that has been mind blowing in that we experienced the power of Cole’s human spirit crying out for, and gaining control over, who he truly is.

Part of this journey included an extraordinary wish by Cole to retrieve and freeze his eggs before starting hormone therapy (at that time, he was one of the first female-to-male transgender persons in the country to undergo this procedure). Cole knew he wanted biological children someday.  Once Testosterone therapy begins, it is extremely difficult, and sometimes impossible, to produce viable eggs. This was not a decision we all took lightly but one that ultimately led to the success of preserving a part of Cole that will become a living, conscious part of him.  The process was both costly and physically painful but one well worth it.

Cole’s senior portrait

Two-and-a-half years later, Cole is a thriving college student who is secure and happy.  It is not lost on me the almost full circle gift that my husband and I lost, found through adoption, and now can give to Cole – a chance to be a parent.    Now days, those in the LGBT+ community can entertain options once closed to them. I have no residual pain or regret about not being able to have a biological child.  Though Cole did not come into this world from my body, he is, most definitely a part of me. My labor was different but just as mind blowing and wonderful.  It gives me great joy that my husband and I were not only able to help Cole become and openly express his true self, but to help instill hope for his future as a parent.  What greater gift could a parent possibly receive?

Love, Hope, and Acceptance: A Family’s Transition, is available at Amazon and at Barnes and Noble.

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.

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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.