Sperm Stories: A New ART of Infertility Project

In honor of Men’s Health Month, we wanted to announce a new ART of Infertility affiliated project! We are thrilled to receive funding and support to investigate how men rely upon and use social media when experiencing infertility. This is a project that was co-designed by our social media undergraduate intern, Kristen Mahan. Kristen will be a senior this year at the University of Wisconsin-Oshkosh majoring in digital marketing. Back in the Fall of 2018, Kristen enrolled in a class taught by Maria where she expressed interest in working more as an intern with the ART of Infertility. We are thrilled to have Kristen on our team and helping us understand how we can better support men with infertility.

All of this means, we need your help! We want to know what guys want and need from social media when experiencing infertility. Much of the content out on the web is created by and for women. While this is great and starts the conversation, we need to #flipthescript and think about the other half that need support too.

Read more about the project, follow @sperm_stories on Instagram and Facebook. Message us or email at info@artofinfertility.org and participate at the end of June in a short survey that helps us understand the content that guys want. Below are a few Q&As to contextualize the project further.

“Sperman Adventures – Volume 1” a piece reflecting on male experiences of infertility.

 

 

 

 

 

 

 

 

 

 Q: Why focus on men, infertility, and social media?

Infertility is an issue that affects both women and men but is generally stigmatized as only women’s issue. Nonetheless, it is estimated that one-third of infertility cases are the result of male reproductive issues, one-third a result of female reproductive issues, and one-third either a combination of both sexes or unexplained (“How Common Is Male Infertility”, 2016). Yet, despite men representing a significant population of the infertility community, resources have been stagnant and research has found men with infertility lacking support networks and educational resources (Petok, 2015; Gannon, Glover & Abel, 2004). Such lack of targeted support and resources has led to an increase in a sense of stigma, isolation, depression, and stress in men experiencing infertility (Hanna & Gough, 2016).

This proposed study aims to intervene in the stigmatization of male infertility by creating and testing a social media campaign directed at infertile men during the month of June, which is nationally recognized as Men’s Health Month. Rationale for a social media campaign is rooted in a 2010 study that found media campaigns can greatly produce positive changes and prevent negative changes in health-related behaviors (Wakefield, Loken & Hornik, 2010). Their study advocates for additional research around health media campaigns to test the effectiveness of individualized, targeted campaigns. Given the proposed effectiveness of health media campaigns, particularly for stigmatized demographics, this study seeks to better understand the educational resources and support offered to men experiencing infertility.

Q: How do I participate?

Participation is easy and completely voluntary! If you do participate, you are eligible to receive a $10 Amazon gift card. To participate, please contact us at info@artofinfertility.org because we need you to sign a consent form. A consent form is needed because this is a project affiliated with a university. This means we will be talking and sharing our findings with other colleagues and infertility researchers. You can participate using a pseudonym or “fake name”, and we can talk more about how you may like to participate via email or a phone call. You must “sign up” to participate by July 10, 2018.

Q: Why is the ART of Infertility running this study?

The ART of Infertility does many things beyond hosting art exhibitions. Much of our mission is to learn from the stories and people we meet through our work hosting infertility art exhibitions and breaking the silence around infertility. To do this then, we work with universities to run research projects. This project is an opportunity for us to better reach men struggling to build their families. This means we welcome straight men, gay men, and single men to participate. Help us understand the content and community you need in online/social media spaces.

Also, as a study funded through an undergraduate research grant, your participation will help mentor Kristen, our intern, looking to run social media health campaigns once she graduates in 2019. This is a joint effort that seeks to benefit everyone involved!

The ART of IF / Sperm Stories team: Elizabeth (left), Kristen (center), and Maria (right).

 

 

 

 

 

 

 

Q: So when do I start?

Now! Really, posts and content have already been made “live” on both our Facebook and Instagram pages. While this research project technically lasts throughout the month of June, we will be continuing to populate and keep this account alive. We are committed to learning from our participants and building a community that talks and features male perspectives of family building. Help us continue the conversation by following these accounts today!

How ART of IF Intern Kristen Mahan will #FlipTheScript this Men’s Health Month

As most of you already know, we The ART of Infertility will be in Los Angeles during the month of June for Men’s Health Month. We are thrilled to be collaborating with Dr. Paul Turek of The Turek Clinics and to have Men’s Health Network as a Media Sponsor. Throughout the next few weeks, we will have a series of announcements sharing specific programming we will be hosting in conjunction with the exhibit. Here is our first “mini announcement”: we got a grant!

Maria, left, with Kristen at University of Wisconsin Oshkosh

Throughout this year, The ART of Infertility has been working with Kristen, our undergraduate intern who is majoring in marketing at the University of Wisconsin Oshkosh. Kristen worked with Maria to design a research project that studies how social media campaigns can be better targeted at men with experiences of infertility. This work represents a new direction The ART of IF is embracing — mentoring young students about infertility and engaging in small research projects to provide an educational experience that responds to real, world issues in the fertility world.

We will have a lot to learn in this process but are excited and hope that we can #FlipTheScript to learn how to better include men in conversations of reproductive loss. Read more about the research project and Kristen’s take on it.

What is this grant?

With the help of Maria Novotny, I have been awarded the 2018/2019 Undergraduate Student/Faculty Collaborative Research Program grant. The research grant through the University of Wisconsin Oshkosh will allow me to travel to Los Angeles with the project and learn about the challenges men face when experiencing infertility. As a young college student, I really do not know much about this experience. But working with the project for a few months, I have become more acutely aware that even if I’m not infertile — a friend or family member in the future most likely will share in this experience.

What is my research project?

Because The ART of Infertility tries to support marginalized populations experiencing infertility and that the Los Angeles event is held in conjunction with Men’s Health Month, my research project is focused on men.  Meaning, I am researching what educational resources men are in need of when experiencing infertility. We know one issue is a lack of male-focused infertility support. So, my research as a digital marketing student is interested in using social media as a way to foster a sense of support and community for infertile men. I plan to create a social media campaign, run that campaign after the opening of the LA exhibit, and then test the effectiveness of that campaign through a targeted survey. This means, that I need participants! So guys, this means I need you!

Why focus on social media?

A 2010 study found that media campaigns can greatly produce positive changes and prevent negative changes in health-related behaviors. I hope that my social media design and survey results will illuminate a series of findings and recommendations that describe methods of how to improve health-related resources for infertile men. Thus, reducing the isolating, stressful, emasculating, and stigmatized experience of male infertility.

What I’m looking forward to:

As a newer member to The ART of IF team, I am extremely grateful for the opportunity this grant from UW Oshkosh is allowing me to experience. Finally being able to see one of the exhibits that Maria and Liz put so much time and energy into will help me grow as a communications intern for ART of IF as well as a marketing/digital major in general. Throughout the first few months of interning with ART of IF, I have mostly seen women share their experiences with infertility. Having the chance to shift gears towards what males experience as well will be beneficial for my learning of the topic of infertility.

 

Pain, Regret, and Blood: A Journey in Infertility

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.

Love’s Conception – Third Party Reproduction

Tomiko Fraser Hines – Photo by Guy Viau

Learning you will need to turn to third party reproduction in order to have a chance at experiencing a pregnancy is a hard thing to wrap your head around. Tomiko Fraser Hines used the art of poetry to find healing.

We first learned of her poem, “Love’s Conception…For My Boys,”  during our National Infertility Awareness Week event in Los Angeles in 2015. Then, the next month, she recited it for us during an Advocacy Day mini interview in D.C. You can #listenup by playing the audio, or reading the poem below. Thank you, Tomiko, for sharing your story! We look forward to seeing you in Los Angeles when we are there for our Men’s Health Month event in June!

“I wrote this poem in November of 2012 when I was about seven months pregnant with the boys. I was in the midst of all of the concerns that come with the way they were conceived, which was via an anonymous egg donor. And, basically, that they would not have (to my knowledge, I’m not a scientist) but to my knowledge they wouldn’t have any of my genetics. So, I had a lot of concerns about that and I needed to find a way to come to peace with it. I write, and words just kind of come through me. I sat down and I wrote this poem for them, but also for me, and it’s called, Love’s conception… For My Boys and it goes a somethin’ like this…”

You won’t have my eyes, but you will benefit from my vision.
You won’t have my mouth, but I will teach you how to use your voice.
You won’t have my ears, but your listening will be finely tuned.
You won’t have my DNA, but my blood will forever nourish you.
You were not my conception, but I will birth greatness in you.
We won’t reflect each other on a physical level, yet we will mirror each other in wondrous ways.
I will guide you.
I will shape you.
I will encourage you.
I will free you.
I will love you.
Hello! My name is Tomiko, and I am your mother.