Announcing A New Project: The Infertile Post

 

Wow! Where has summer gone?

Here, at The ART of Infertility, we kicked off the bbq and beach season in Los Angeles. There, we worked with One More Shot and The Turek Clinics to host a Men’s Health Month exhibit “Reimagining Reproduction”.

Our poster for the Los Angeles exhibit, “Reimagining Reproduction”.

It was in LA that we came across one of these unique finds: a full size mailbox! We sent Elizabeth’s mom, Judy, to downtown LA to pick up the box and drive it back to the gallery in Venice. We had learned from the prior owner that the mailbox originally came from Wisconsin and was later driven out to LA. After using it in our LA exhibit, we decided to return it back to the midwest and ship it to Michigan.

That leaves us to an announcement. Inspired by the mailbox and wanting to incorporate it into the project, we are announcing a new sub-project with The ART of Infertility.

The Infertile Post is an infertility and reproductive loss community art space. The word “post” is a play on announcements we receive in the mail such as holiday cards featuring Norman Rockwell-esque portraits of families with children, perhaps celebrating a new addition to the family.  “Post” also recalls ideas of a newspaper or online posted space — the idea of sharing stories as a collective series of voices and perspectives.

The Infertile Post invites individuals to write posts – large or small – and send them to us (yes, snail mail!). We will then share your post with our fellow infertility community via art exhibitions and online gallery spaces. Our objective in this project is (a) to offer a space free of judgment for those dealing with infertility or reproductive loss where they can write and express themselves, and (b) showcase a collective series of viewpoints and experiences that are shaped by infertility and/or reproductive loss.

So send us your mail! Really!

Send us your “infertile post”!

A Few Q & As to Guide Your Participation

Do I need to sign my post?

No, individuals can choose to identify how they please. They may use their own name, a pseudonym, or simply not sign it all.

Where do I send my post?

The ART of Infertility

℅ The Infertile Post

P.O. 1110

Jackson, MI 49204

What are some example posts?

“A Letter to My Fertile Friend”

“A Letter to My Unborn Baby”

“Dear Period, you suck.”

“Dear Bank Account, I’m broke.”

“A Letter to Your Doctor”

“A Letter to Your Younger Self ‘Pre-Infertility'”

“A Letter to Your Legislator”

“A Letter to your Infertility Hero”

“A Letter from the Stirrups”

Etc.

Will my post be returned to me?

Unfortunately, no. We want to document and create an archive of these posts and plan to keep the physical versions for exhibition.

How long should my post be?

As long as you want! This is your post so it can be as long or as short as you want. The point for us is that the post serves as a place for you to express yourself and get your energy out! You do not have to be the most eloquent writer in the world, nor have the letter be grammatically correct. We just want to give you a space to think about an experience (good, bad, frustrating, happy, whatever) that documents living with infertility or reproductive loss.

Is this different than participating in The ART of Infertility?

Yes and no. This is a sub-project of The ART of Infertility. We expect to feature these posts in upcoming exhibits. We also want to feature online galleries of these posts, similar to a digital archive. In many ways, think of this project as an extension of what we, The ART of Infertility, already do — fuse creativity and experiences of reproductive loss together! Why? Because art and writing heal.

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!

ONE MORE SHOT with The ART of Infertility in LA! Chatting with director Noah Moskin, aka my Hubs

Today we have a special guest blog post from Maya Grobel. Read a bit about Maya’s conversation with her husband Noah and learn why they decided to pick a camera and film their modern family building journey. Remember to join us this Saturday, June 9th at Venice Arts where Noah and Maya will screen their film and host a panel on making modern families starting at 3pm. 

In honor of the upcoming Men’s Health week (June 11-17) and the Los Angeles screening of our film, One More Shot, with The ART of Infertility exhibit, Reimagining Reproduction, I decided to do a Q&A with my man, director/producer/subject of our film and overall awesome husband.

Panel discussion with Maya (center) after a screening of the film, One More Shot, in Salt Lake City this February. Photo by Steven Vargo.

Noah and I spent half a decade, half our marriage really, trying to make a baby. We spent about the same amount of time trying to make a movie. I’m not sure which was harder (or more expensive) but I’m grateful that we are on the other side of both efforts and that we are able to be a part of something like the ART of Infertilty exhibit, where we can share our story, connect to others with a similar experience, and instill hope that there are different ways a baby can be made. One of our main goals with this film is to decrease the stigma and shame often associated with infertility, and normalize the different ways babies can come into this world. On June 9th, we are excited to be screening the film with the ART of IF at Venice Arts in Marina Del Rey, LA, which is not just our home town, but literally, the gallery and our home are on the same street! We’d love to invite any local folks who are interested in checking out the film, the panel that will follow, and the gallery reception to GET FREE TKTS by clicking on the link.

If you like this mini interview with Noah, aka Hubs, then you’ll love seeing more of him and many others who have been some how impacted by infertility.

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

M: We are showing our film, One More Shot, with the ART of IF— What does it mean to have this film included as part of this art exhibit that displays different aspects of the infertility struggle through artistic means?

N: I always like being a part of Art of IF. I don’t believe you need to make a feature length film to say something about infertility. ART of IF features all kinds of media and mediums. I think it’s so important because you can tell that every piece is so important to the artist. It’s them throwing their hearts and pain and wishes into these pieces. You can really feel how much the pieces mean to those that created them. And that’s the whole point. Get it out.

M: Why was it important for you to have this creative outlet in making and editing and producing this film while we were going through years of infertility treatments?

N: I’m not the best at expressing my feelings in conversation. It was tough for me when it felt like we were having the same conversations daily. I didn’t really know what to do with all of that. But I can tell a story. I can make a show. I can make film. So throwing myself into that not only gave me something constructive to do with my energies but it also helped me process what we were going through.

M: How did making this film help or hurt our relationship?

N: I don’t think it hurt our relationship. I think it helped. It was an opportunity for us to do a creative project together and have a focus that wasn’t about the next IVF procedure or scheduling meds. Instead, we were able to focus on making a movie and all the things that come with that. We were doing something together other than staying up late and crying about our situation. It helped us and it kept us sane.

M: Our fertility struggles were because of issues I had with my ovaries. If we had male factor infertility, do you think you would have been as open documenting and sharing our reality?

N: I don’t think the process of making the film would have been as straight forward for me if it would have been male factor. There was still some distance for me in making it that allowed me to be a bit more objective. Personally, the longer it took for us to make the film the easier it was for me to talk about the whole thing. If the problem had been male factor I think I probably would have internalized a lot more of it. I don’t think I would be the best person to represent the male factor story. I hope somebody does make a male factor take on all of this. It would be really interesting and brave. For One More Shot, I really think this film works so well because of you and your voice and the way you were so open throughout.

M: What is one thing you would encourage any husband/partner to do to both support their partner and also support themselves emotionally through the process?

N: I would suggest a two-prong attack. First and foremost you need to talk about it, probably more than you want to. The more you discuss it with your partner, the easier it will be to discuss it in the real world, and that’s very important. It’s not important in the sense that you have to be a voice for the community – that’s great if you feel empowered – but it’s important because the more you discuss it the less shame you will feel. It will no longer feel like a reflection of you as a person. Second, you need an outlet. You need a way to blow off steam. As much as talking about it is important, you need to feel like you aren’t defined by infertility. You need to do things that allow you NOT to think about what you’re going through. For me, it was travel, creative projects, and taking up rock climbing. Trying not to fall off a giant slab of rock is a great way to avoid thinking about infertility.

M: And lastly, why should anyone is LA on June 9th come see our film, join us for a panel discussion about making modern families and have a drink with us and the fabulous folks at The ART of Infertility exhibit?

N: This is a fun opportunity even if you’ve already seen the movie. I’m really excited for the panel discussion and to see some of the people we interviewed talk about their experiences and connections with the film. I always jump at the chance to see a filmmaker speak about a movie I like. You get a more in depth understanding of what it took to make a film like this. Also, we’re all awesome people and the ART of IF team is great so why wouldn’t you want to come out to the Westside and make some friends?

Urban Arts Gallery, Salt Lake City. Arches in Perspective: The ART of Infertility in Utah was displayed here and at Art Access. Photo by Sarah Arnoff.

Experiencing Infertility as a Person of Color: A Black Woman’s Perspective

Today, we are running the second part of our series “Experiencing Infertility as a Person of Color” created by our Michigan State University intern, Juliette. As a woman of color herself, this is a topic deeply personal and of interest to her as she collaborates with our organization to bring awareness to all experiences of infertility. Below is an overview of her interview with Madge, who has been a prior participant in the project.

Juliette, presenting her research on women of color and their experiences with infertility at Michigan State.

The second interview I conducted as part of my effort to unearth the reality of being a woman of color in the world of infertility took place with Madge Harris-Rowland. Madge is a black woman who currently teaches in Jacksonville, Florida; Madge received her infertility diagnosis in October 2013, a time in her life when she was living in Grand Rapids, Michigan and didn’t have health insurance. As someone who is young, broke, and quickly running out of time to still be on my parents’ insurance, this fact resonated with me.

What I’ve learned about infertility treatment up to this point is that it’s a numbers game; it poses a real financial constraint on the people it affects and adds one more layer of hardship to an already difficult diagnosis. Medical treatment isn’t cheap, yet we live in a country where affordable healthcare isn’t an option for a lot of communities of color and younger people. I liked talking to Madge because she was realistic about how money, and lack thereof, can limit what someone’s response to this disease is. As a woman of color without insurance, Madge consistently felt invalidated by medical personnel and clinics who didn’t offer her the same level of care as women she knew who had insurance. She often had to ask herself if this poor treatment was coming because of her identity as a black woman living in a predominately white area, or if it was because of her socioeconomic level and lack of insurance.

Madge

Madge’s testimony was the first from a black woman that I’d heard. She spoke about the issue of her blackness in a medical world sparse with representation, one that traditionally prioritizes the bodies of white women. As Madge says of infertility within her community, “There are less options and it is less talked about. There are these myths that we’re told about how [black women] can pop kids out. Infertility is not a big deal in African American communities.” The lack of representation for Madge didn’t end in Grand Rapids; it followed her to Jacksonville where as many other women were forced to do, Madge had to turn to an online platform to find support when no physical space existed for women of color.

I had gotten to know a little about Madge’s financial struggle, but I also wanted to know how her identity as a black woman affected her journey with IF. I wanted to know what infertility was to Madge before and after her diagnosis.

She told me, “I knew about it, I knew of it, but the things you see in the media and talking to other people… it was nobody that looked like me. There’s no one you can sit there and relate to because we don’t talk about it, we don’t show that side of our community. People think infertility is not a medical disease. You feel isolated because there’s no one that looks like you. I’m a teacher; I know what happens if you don’t have someone that looks like you in a positive light. There needs to be some type of research on how this affects women and men of color because there are so many stereotypes out there that are still seen as truth.”

Madge on her wedding day.

After talking to Madge, I had a lot to think about when it came to my own identity. I grew up with ideas about how the world worked, how my body would work within that world, and thought I was all but guaranteed to have a child if I chose to do so. I didn’t know that there are no guarantees, or what the price tag on medical treatments is if my body can’t naturally conceive. I didn’t know it could cost upwards of $30,000 just to adopt in certain states like Florida, or that creating your own support group is more common than resources being readily available. I’m glad I’ve been able to learn these truths about infertility, but I would like to see them change. Talking to Madge, I got a better look at what the reality and limited options there are for people like me, who in this stage of life, can’t afford to be infertile. I hope that in the future there is easier access to affordable care, that support groups are the norm and silence the rare exception. I hope that infertility is a conversation that happens with more frequency so that all communities affected by it can be supported financially and emotionally.

Experiencing Infertility as a Woman of Color: An Asian American Perspective

When I started working with The ART of Infertility organization, I knew very little about infertility and even less about how it affected women of color. As a black woman I wanted to change this, confront my own ignorance and attempt to represent the voice of marginalized women within a marginalized topic. But I wasn’t exactly sure how. When I read stories from occasional anthologies or on my Facebook newsfeed (no doubt due to algorithms hard at work in my Google searches about infertility), I repeatedly found that the people described were white women or white couples who were pursuing medical treatment options.

ART of Infertility intern, Juliette.

While I strongly agree with Audre Lorde in her claim that “there is no hierarchy of oppression,” I firmly believe that representation will always matter. Infertility affects people of color and our storytelling should create a space to expose and discuss these stories. Where was the discussion and aid for people who looked like me? For people who couldn’t afford medical treatment options or had no community to fall back on for support? Where were the women of color in the narrative of infertility, and what were their stories?

My questions began to get answered the day I got a call from Elizabeth, who wanted to see if I would be interested in conducting an interview with the amazing Annie Kuo, an Asian American woman who resides in Seattle, Washington. I jumped at the opportunity.

Annie is a mother to a six-and-a-half-year-old daughter, an activist that trains RESOLVE advocates to rally for family-building legislation on Capitol Hill, and a great source of information on the different options for women dealing with infertility. She’s hosted a RESOLVE support group for three years and done research on third party reproduction, adoption, foster care, and egg freezing.  

The following is a brief excerpt from a conversation I had with Annie focusing on how race affected her journey in the world of infertility. – Juliette


Juliette: As a woman of color, have you been able to get the quality of care you deserve? Have you ever felt like you’ve been denied certain things because of your ethnic identity?

Annie:  I haven’t personally noticed any difference in the level of care. But I am American who is the child of immigrants. I speak fluent English and live in a very progressive major city on the West Coast. I do know, however, that cultural factors impact people of color in terms of infertility awareness and the right time to consult medical personnel. For example, Asian Americans are less likely to seek medical advice within two years [of not conceiving] which wastes precious time. Due to the denial of their situation or distrust of a medical professional, they often will consult a friend or family member instead. If my Asian American sisters who are suffering silently can feel a closer identification with me when I speak about infertility, that’s worth speaking up for. One reason I’ve been so willing to tell my story is because I feel like it helps remove some of this social shame around something that affects a lot of people.

Annie Kuo, an ambassador and family-building advocate with RESOLVE: The National Infertility Association.

I’ve heard women of color in support groups talk about fertility stereotypes that weigh upon them, the expectation they face if they don’t have their desired family size, the shame that they feel. There’s a cultural stereotype of Latino and African Americans that they’re very fertile people, so there’s an extra stigma (and lack of community understanding) within certain communities of color about infertility. A lot of what we’re doing is a movement; it’s a movement to remove some of that shame and stigma.  

When we’re out there on Advocacy Day to help Americans struggling to build their family, that’s fighting for everybody. For the people who have money to afford IVF, or at least take out loans to do it, but also for the people with infertility across the socioeconomic spectrum who pursue family-building options through means that cost less money—like foster care.

According to the National Institutes of Health, infertility affects 1 in 6 people. It’s an equal opportunity disease. It doesn’t care what race, color, or class someone is. It strikes people at random. The lower income folks, which let’s face it, do include people of color, struggle to build their families too. They can’t always afford IVF… a lot of times they can’t. These are the ones we fight for on family-building legislation around foster care, because often they will turn to foster care to expand their families. I want to get adoption tax credit refundability on Capitol Hill so people of color who are fostering to adopt have the option of adopting more than one child into their home, many of whom are siblings. There is a highly disproportionate number of foster children who have siblings.

Annie, with other Washington state advocates, at the 2016 Advocacy Day hosted by RESOLVE: The National Infertility Association.

In regards to third party reproduction, I definitely think there is an issue in finding the right match for you. It’s limited by who is in the donor pool. A couple years ago, our support group took a tour of the local sperm bank. There was an Indian American woman in our group and at the time, only one Indian sperm donor available. She wanted an Indian donor and that was her only choice at that bank.  In the Asian American community there are fewer women who are willing to donate their eggs, so there are fewer choices. Women even get recruited from Asian countries to donate their eggs because intended parents want to find the right match. When there are limited options, recruiting donors outside of North America expands the pool selection. Asian egg donors are paid higher in some places as well.

J: Do you think this lack of diversity within donor pool is because so many people don’t know the real scale of infertility in this country? Is it possibly a money factor?  Why aren’t there more in your opinion?

A: I think there’s a combination of factors, including lack of awareness about ways to help and that there is a need in general that struggles to be met. Part of it is stigma about giving up one’s own genetic material for pay. It’s almost looked down upon, like you sold out, gave up your gametes for money. It can be perceived as shameful to use it on the side of the patient and shameful to give it on the side of the donor. In India using a gamete donor is not mentioned. Often, donor recipients don’t even tell their relatives. Honestly, I think some of the gamete providers, I’m talking sperm and egg banks, they’re also not proactively going after donors of color. They’re not prioritizing this… I don’t know, maybe it’s some tall WASP’y guy making the decisions and they don’t have the frame of reference to get that this is an issue.

J: Do you think that art has a healing capability and a place in this conversation about infertility? Can it be used to represent a marginalized community and bring them into this conversation?

A: I think art is a wonderful way for expression and public consumption. A lot of people can see through creative forms like film, artifacts, and visual art what they are feeling inside. Art and emotion, I feel, are cosmically linked. There’s something spiritual about it. Something that can express what other forms don’t have the power to. I would encourage more people of color to get involved with having a creative outlet for what they are experiencing or suffering, whether that is journaling or creating a vision board or taking brush to canvas. Art, film, and writing are often healing ways to create when we may be limited in our creation of life, speaking reproductively. I think it’s a wonderful outlet to have and I think more people should consider pursuing art as an outlet. Not only to raise awareness and contribute to an exhibit, but to heal.  

Annie, with Maria and Elizabeth at The ART of Infertility Exhibit Opening in Seattle in April 2017.

To read more about Annie’s story, she shares her perspective on living with infertility as an Asian American in the following articles:


My conversation with Annie gave me a glimpse at a different side of infertility, one where the women not only battle their bodies but must also combat communal stigma, lack of donor options, and lack of representation. I think my biggest take away, one that I find myself coming to fairly often in my research on infertility, is that these things need to be talked about with more frequency. Annie’s insight, candor, and willingness to share her story to help other women of color dealing with IF so they don’t have to face what they’re going through alone is not only inspiring, it’s necessary. And it needs to happen more.   

 

Next week, we will feature Madge’s story and experience of navigating infertility as a black woman. Look for it soon!

Sisterly Reflections on Mother’s Day

May 13th is Mother’s Day. In my family, it is also our Mom’s birthday. Last week was a string of texts between my sisters and I discussion how we were going to celebrate my mom’s birthday this year. Realizing that my Mom’s birthday fell simultaneously on Mother’s Day, the question of how we were going to celebrate both events emerged. These conversations made me think about the awkwardness of navigating “celebrating your mom” while also being sensitive and respectful of those in your family without kids.

Maria with her four sisters on a family vacation to Wyoming.

Ever since I was diagnosed with infertility 7 years ago, this feeling of awkwardness has grown. It’s hard to show up at the combo “Mother’s Day and Mom’s Birthday” party and greet everyone with a smile and say “Happy Mother’s Day”. But I do. Mainly because this day isn’t about me — it’s about my mom. I do this also because I come from a big family – 4 sisters and 1 brother. For my sisters, Mother’s Day is still a big deal. It is something they enjoy celebrating with my mom. They also know, though, that Mother’s Day is a difficult day for me. Given that, this year for an ART of Infertility Mother’s Day blog post, I asked a two of my sisters to reflect on what Mother’s Day means to them now as they navigate how to celebrate my mom while also being sensitive to me and my infertility. – Maria

Reflections from Kate:

It’s Mother’s Day and even though I don’t have kids, I find myself thinking of what the day would look like if I did. Breakfast in bed, crisp white and blush roses on the kitchen table and little fingerprint cards lining the refrigerator. I imagine no cooking, no laundry and sleeping in until 7:30 am. I also think of my friends with kids and how they amaze me with their ability to juggle nursing schedules and daycare pickups while meeting deadlines at work and finishing PhDs. I think of my mom, a working mother of six kids, who tirelessly manages the needs of children ranging from thirteen to thirty one. I think of the individuals I know who froze their eggs due to the onset of cancer treatments. I think of the mothers who have lost children and the children who have lost their mothers. I think of my friends who suffered miscarriages and struggled to get pregnant.  And I think of my sister Maria, whose personal experience with infertility has transformed my impression of motherhood.

Maria, with her sisters and mom at Kate’s wedding.

Maria and I are fourteen months apart. If you do the math, that means that my mom was pregnant with me when Maria was just 5 months old. This made us inherently close as siblings, but distinctly unique in personalities. Nonetheless, I remember wanting to be just like Maria as a kid and begged my mom to let me go to preschool when Maria started kindergarten. I also remember Maria telling me what to do as a kid, and me being happily compliant. She enlisted me to paint the kitchen in red finger paint while my mom was violently ill with the flu, she convinced me to play the “ugly” Barbie when we played dolls, and she insisted that I “be her assistant” whenever we ran our imaginary McKay’s Bar and Cafe.

As much as I wanted to be just like my sister, I could never compete with Maria’s clear ambition and punctual nature. Maria always had timeliness in her deliverables and a goal driven mentality to her thoughts. In high school, she ran the neighborhood carpool and if you weren’t in the car at exactly at 3:15 pm, she would leave school without you.  At home, she completed all of her homework from 3:45 pm – 4:30 pm in order to make her closing shift at the local hardware store. In college, Maria was the only person I knew who worked from 9 am – 5 pm in the library so that she could cook, watch tv, and relax at night.

So when I found out that Maria and her husband Kevin had been trying to get pregnant for over a year without success, I was surprised. I imagined Maria applied the same punctuality and determination to getting pregnant as she had throughout other areas of her life. But as the years passed, the objective of becoming a mother and having a child was confronted with the diagnosis of infertility.

We as sisters rarely talk about Maria’s experience with infertility, but this Fall it came into focus while we were together in Philadelphia. Maria suggested that my sisters and mom come see the ART of Infertility exhibit she had curated and celebrate my 30th birthday. Over lunch and plates of dumplings and dim sum, my sister threw out a question none of us were ready to answer. Some may say, she has a gift of being direct.  “Do you think my infertility has influenced your decisions to have kids?” Silence.

I watched  one of my sisters choke on her pork bun as the other burnt her tongue on jasmine tea. Our eyes met in silent desperation as we waited for one of us to speak. This moment of hesitation was resolved by our own mother’s intervention. We didn’t talk much about this moment until after we returned home from the weekend. Motherhood is a personal decision and that question felt thrust upon us. Choosing when or even if we want to be mothers is not an open conversation in my family.

Growing up in an Irish-Catholic family of six, it has been an assumption and an actual vow made within the marriage ceremony to welcome children into your life. I know that for myself and my sisters we do eventually want to have children.  Maria’s loaded question called us to consider the influence of her infertility on our personal decisions. While it made all of us uncomfortable to discuss in public, I’ll do my best to honestly answer it now.

Maria’s  infertility has influenced my ability to understand the complexities in the very definition of “motherhood.” Before Maria was open about her struggle to get pregnant and the pain and stress it brought to her life and marriage, I had a very narrow framework on how I thought about motherhood. Growing up in a seemingly fertile family made it difficult to identify with the  hardships that so many women undergo to become pregnant. Yet, in witnessing  Maria’s journey  and hearing the stories of couples though the Art of Infertility, I have adjusted my assumptions around motherhood.  It has afforded me much needed sensitivity and compassion when having open conversations with friends who walk similar, difficult paths.

I can’t say that Maria’s infertility has directly influenced my decision to become a mom, but it has shaped how I think about embracing motherhood in the future. Seeing Maria apply her dedication and purpose to build a supportive community for couples struggling with infertility is inspiring. Watching her walk at MSU as a PhD candidate made the kindergarten Kate want to be in school too. Witnessing the reaction of couples at her curated art exhibit in Philadelphia made me proud of how she has channeled her creativity and inspired others to come forth with their stories.

Maria with her sister Julia, Kate, and her mom.

In light of the struggles to become a mom, Maria has continued to “mother” us as we embark upon new chapters in our lives. She’s been the support as we have moved to new cities, taken new jobs and opportunities, welcomed new brother-in-laws and said goodbye to family members who have passed. She has reminded us that motherhood is not an entitlement, but a true gift worthy of celebration. I now have a broader sensitivity to the struggles of those with infertility, those who have suffered loss as a mother, and new mothers in need of postpartum care.

Maria’s experience has also reminded me that there is no set timeline to motherhood. As my thirtieth birthday approached this year, I could almost feel my biological time clock start ticking. While my sister’s struggle with infertility presents looming questions of my own ability to have kids, I recognize that there are other ways I can be motherly within my life.

By honoring my mom, my aunts and grandmother, I celebrate the gift of life that they continue to nourish. In visiting new moms, I can help tend to postpartum needs. In listening to a friend after her most recent miscarriage or encouraging a mom-to-be with an unexpected pregnancy, I can lend my comfort and support.

As I begin embrace the idea of becoming a mom, I know that I will need Maria’s recognition and support. I also acknowledge that our dialogue around motherhood will shift if I do become pregnant. That’s why it was so hard to give Maria a concrete answer when she asked us about the influence of her infertility this Fall. Her inability to become pregnant has not adjusted my desire to become a mom, but it has required me to deconstruct my concept of motherhood and embrace a framework that is much more inclusive, honest and forthcoming about the challenges of fertility. Maria has forced me to conceive of motherhood on new terms and in a new spectrum. And if I’m lucky to celebrate Mother’s Day with my own kids, I can only hope that Maria will be there to help mother me through all the pains and celebrations that come along with it.

Reflections from Martha:

Mother’s Day is here again. Although I am not a parent myself, this holiday is one of great significance to my family members and me. Not only is it a time to appreciate those women who are closest to us, but also a time to be reflective and humble in the midst of those who face infertility.

Maria’s mom and Martha viewing an ART of Infertility exhibit.

I can recall spending Mother’s Day as a girl surrounded by friends and family. This day usually aligns with my mother’s birthday, so we would frequently host many individuals that day and celebrate Mom, aunties, grandmothers, etc.

When Maria got married, people frequently asked her “…so when are you going to have a baby?” As a newlywed, she would shrug and smile, assuring them it would be soon. As months turned to years, that optimism faded and Maria changed her tune. The smile and assurance switched to an uncomfortable laugh and the answer, “I don’t know.” Soon, we learned that she and Kevin were struggling with infertility.

As an outsider to their relationship, I do not understand all that they have gone through. I’ll admit that to this day, I still do not fully understand. I have never walked a mile in their shoes. I don’t know the words spoken behind closed doors. I don’t know the feelings of loss for something you’ve never held. I don’t know their sadness. I don’t know their pain. But, I do know it is valid. Their pain is real.

One of the greatest things I struggle with as being a sister to someone who has been diagnosed as infertile is learning how to comfort her. It is challenging to gauge if I am being supportive in an effective manner. Every Mother’s Day and Father’s Day, I envision myself in Maria and Kevin’s shoes. I wonder what it must feel like to experience an inescapable sense of stimuli centered around fertility. Whether you’re walking through the grocery store or scrolling through your phone, those days are filled with moments of joyful expression from mothers and fathers everywhere. There’s no place to hide: no way to retreat. As her sister, all I can do is reach out. I send a text or give a call, expressing my love for them and sharing with them that I’m thinking of them that day.

Infertility can cause people to close their doors to the outside world and shut themselves off from loved ones who don’t understand the pain, but we need to understand. As a family member, I’m requesting two things: patience and education. Give me what I need to know to be there for you. There’s no manual that comes with this position. At times, I live in fear of putting my foot in my mouth.

I cannot relate to feeling branded “infertile” on Mother’s Day. It must be gut wrenching to look around you and feel teased, taunted, and angered by what others have that you continue to lack. To see something you’ve wanted for so long and something you treasure so deeply and yet, it’s the one thing that you cannot control. That frustration and sense of exclusion on that day must feel awful.

In light of my sister’s infertility, I still choose to celebrate Mother’s Day by taking a moment to honor the women I love. I see it as a holiday that offers a platform for thanking the all the women (not just biological mothers) who have given themselves to me unconditionally. After all, that’s what motherhood is: an act of undying, devotional love. It is a day to be inspired by those who have come before me and appreciate those who walk alongside me.

I’m proud that Maria continues to transform her mourning into an outlet of creativity that inspires others. My hope is that on Mother’s Day we all take a second recognize the strength of the women in our lives and stand in solidarity throughout the journey, not only as mothers, but also as sisters, granddaughters, and friends.

 

 

Mingling (Infertility) Experience Research and Friendship

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 Communication32, 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 & Language39, 127-131.

Masculinity & My Infertility Journey

 

A few years ago, Kevin wrote a blog post for RESOLVE: The National Infertility Association reflecting on the challenges of being a guy and dealing with infertility. Today, we are running an audio recording of his piece. In it, Kevin confronts a tough question for men dealing with infertility.

Men are expected to “grow up” and “take care of the family” but what happens when these traditional expectations cannot be reached?

Kevin with his wife.

Listen to him talk about coming to the realization that he may never see his wife pregnant, may never feel their baby kick inside of her.

You can read his full story here.

Infertility Reminders in the Mailbox

Elizabeth Walker

The mailbox can be a dangerous place for those dealing with infertility. Receiving a baby shower invitation or a baby announcement can feel like a knife in the heart, or a punch in the gut. At least you usually have some idea they are headed your way. It’s the other random pieces of baby, child, and mom mail that give me the most trouble. One in particular.

mailbox_webI don’t have a problem with catalogs from Justice and American Girl or coupons from Babies R Us. I have 6 nieces an 2 nephews so those are places I shop. Every now and then I get an offer for life insurance from Gerber or an invitation to enroll my daughter in National American Miss pageants. I’m guessing that I just fit the demographic for Gerber and I imagine some of the stores I frequent with my nieces are responsible for the pageant requests. However, my blood pressure rises each time I open the mailbox to find an issue of Working Mother magazine.

If it weren’t for infertility, I would be a working mother now. When I pictured parenthood, I always saw myself balancing my children and my career. Sure, it would be a challenge but I was up for it. I get great pleasure from my work and envisioned my dedication to my career aspirations as a great model for my children and their future success, just as I feel my parents’ dedication to and love for their work influenced me. Working Mother magazine would be right up my alley. I’d likely read it cover to cover and check out any bonus content online.

I’m not sure how I got on their list. Again, maybe I’m just the right demographic, or maybe they are affiliated with one of the retail outlets I spend my money at. Maybe I even inadvertently signed up for it at some point when I neglected to read the fine print when I signed up to receive email notices. I tried for awhile to get off their list. An email to the publishing company, a comment on their Facebook Page. When that didn’t work I just started giving them to my working mother friends.

working-mother

Last year, I decided to reframe my relationship with the magazine by using it to make blackout poetry. If you’re not familiar with the technique, you take a page of text and do a quick scan of it, circling any words or phrases that jump out at you. Then, you go back through and can narrow those down, and use them to create a poem, blacking out the rest of the text around those words. It felt great to cut a page out of the magazine and circle words with my pencil, later using black paint to isolate the words that would form my poetry. I decided to cut the page out in the form of a woman holding a baby and then decoupaged it onto canvas. Here’s the final result.

Working-Non-Mother_web

Committed, worthy, successful, non-mother.

Shouldn’t have to win acceptance.

My own positive impact.

In the year since I made this piece, I’ve started receiving form letters from insurance companies about purchasing coverage for my “teen driver,” which makes me feel even further behind.

Maria and I will be leading a workshop on black out poetry at the Art/Not Terminal Gallery, located in the International Pavilion of the Seattle Center, next to Key Arena, on April 29 from 2 – 5 pm. We invite you to join us to create some black out poetry of your own. We’ll bring all of the supplies you need, including a variety of magazines and medical consent forms to choose from. However, we encourage you to bring your own forms, pieces of mail, etc. to use if you wish. You can purchase a ticket (it’s just $15) to reserve your spot at our blackout poetry Eventbrite page.

We hope to see you there!

A Man’s IF Holiday Perspective: It’s All Relative

Kevin shares his thoughts on dealing with infertility and the holidays. As a guy, he finds solace in dealing with infertility through his work – whether that is intellectual or hands-on. Read more about the inspiration Kevin took from deer hunting this past year.

This November, I went deer hunting for the first time. While sitting in the woods, patiently waiting for a deer to walk past my blind, I began to read Einstein’s biography.  The book discusses in detail Einstein’s two theories of relativity – general and special. His special theory of relativity is what challenged Newton’s long held traditional concept of absolute space and time. Through a series of mathematical equations and experiments, Einstein disproved Newton and instead demonstrated that space and time were relative to the observer – not an absolute concept. For example, someone moving inside of a train will have a different experience than someone standing on the side of the road watching the train go by.

Kevin, sitting in his blind, deer hunting.

Kevin, sitting in his blind, deer hunting.

Reading this in the woods, I couldn’t help but see how much of this theory also relates the experience of infertility.  My wife and I have were diagnosed with infertility 5 years ago. That moment was life altering and brought upon itself a host of questions we never imagined we would have to think about. Today, we often have to remind ourselves that there is no absolute right interpretation or method of dealing with infertility. Just like Einstein’s theory: infertility is relative to the observer. Every year around the holidays, this topic comes up for us as a couple. Often we may be experiencing things differently, and we may have different ways or methods to make the holidays work in our minds. Let’s face it, this holiday is all about the birth of a child and it’s a tough one for the infertility community.

For me, and I would imagine many other men out there, talking explicitly about infertility is not really our way of coping and channeling our energy into something positive. Personally, over this year I have focused a lot on work and have been afforded some unique experiences to travel and live my passion of being a medical physicist. I have also poured myself into renovating our house that we bought as a symbol of our love and what we share together, even if we never have children of our own. This is extremely important to me.

A garage entrance that Kevin remodeled into a living room.

A garage entrance that Kevin remodeled into a living room.

I do not think we should despair over having different ways to make these holidays doable, but we should rejoice in that we share in this experience together. There is somewhat of a beauty in thinking about Einstein’s theory and that there is no absolute correct way to interpret and cope with infertility. However, it is comforting to know that a common thread is that the infertility community all shares this experience together. I hope everyone else out there can use this as a bit of consolation and uplift as we head move into a new year.