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.

Myth – You’re No Longer Infertile Once You Become a Parent

Becoming a parent after dealing with infertility cures childlessness but doesn’t cure infertility. Today, we hear from Lauren of Rainbows & Unicorns, a site about parenting after pregnancy loss and infertility. She reflects on mothering her daughter who was born after donor egg IVF. This story originally ran during National Infertility Awareness Week 2016 and does include an image of parenting. Thanks for sharing your story with us, Lauren!

I scoop up my toddler and carry her upstairs to begin our bedtime routine. Diaper, pajamas, teeth, goodnight Daddy, books, and then — my favorite part — songs and cuddling.

She lies on my belly, her head against my chest. “Saaah!” When one song ends, she looks up and asks for another. And another. And another. Eventually my little ball of energy goes limp in my arms. I hold her for a few minutes, treasuring her chubby cheeks and the smell of her sweet, malty little head before kissing her goodnight until she wakes up to nurse at four in the morning.

Lauren with her daughter at bedtime.

Lauren with her daughter at bedtime.

Although singing the same limited repertoire until my throat hurts and not having more than a five-hour stretch of sleep for almost two years grate in different ways, I remember how it wasn’t always like this. In the tough moments — like trying to console a teething child having an hour-long exhaustion tantrum at 3 am — I somehow find inner strength. I get to do this.

I am a mother thanks to many people, including a younger mom who donated her eggs so that I could experience the same joy she felt when she held her son for the first time.

It wasn’t joy that I felt when I met my daughter. By then, I’d been through too much to let myself feel anything so big. After miscarriage, infertility, being told I would never have a healthy genetic child, and a high-risk pregnancy requiring me to deliver via planned cesarean, I couldn’t allow myself to believe that I was finally a mom. Not until I heard my daughter’s first cries. Not until I held her. Not until she was furiously suckling did it dawn on me that I was out of the trenches.

But am I really a regular parent now? Parenting after infertility is a strange place to be. As I like to describe it, “I’m no longer in the trenches, but I’m covered in mud.”

The grief of infertility is hard to remember. Like the face of someone you loved a long time ago, it’s hard to recollect its features in detail. That is, until a whiff of their perfume, or a pregnancy announcement, or an innocent remark from someone who has no idea why the question “When are you having another baby?” causes your heart to quietly crack a little.

“I’m no longer in the trenches, but I’m covered in mud.”

For many parents like me, we’ve left Infertility Island but we’re moored offshore somewhere else. Play dates with other parents — so many blissfully unaware of everything that can go wrong before, during, and after conception — can have moments that are hard to navigate. How do you relate to another parent who casually announces she plans to get pregnant in March so the baby is born before Christmas? What do you say when someone asks when you’re having another baby? How do you casually explain egg donation when asked where your daughter’s red hair comes from? In time, the answers come.

Don’t misunderstand; none of this is as hard as trying to have a baby. But when you’re a graduating member of a club you never wanted to join, you’re caught between two worlds: the one you had to leave once your child arrived; and the other everyone else assumes you’re in.

I have my “rainbow unicorn” (if a “rainbow” is a baby born after loss, I surmised one born after infertility would be a “unicorn”) and she fills my days with more joy than I thought possible. But joy and pain aren’t mutually exclusive. What a lot of people don’t realize is that having a baby resolves childlessness — not infertility.

You’re caught between two worlds: the one you had to leave once your child arrived; and the other everyone else assumes you’re in.

Even though we’re parents, we’re still infertile. Unless we fall into a small lucky statistic of spontaneously conceiving after infertility, if we want a second or third child we will have to submit to the invasive, sometimes painful, and always expensive tests and protocols we endured a few years before — this is equally true whether you do infertility treatment or adopt.

If we want a second child, we’re lucky to have eight chromosomally normal frozen embryos to choose from. All we have to do is pick a date for transfer. Most of my infertile comrades don’t have leftover embryos, either because they didn’t do IVF or, if they did, they didn’t have any embryos left over. It struck me the other week that some of my friends are going to have to go through the whole TTC thing all over again. They have my full support and admiration.

For me, parenting after infertility has given me some unexpected blessings. First and foremost, I have this amazing little girl in my life. She’s affectionate, smart, talkative, mischievous, and healthy. We might not share DNA, but we share a sense of humor, a love of Marmite, a dislike of tomatoes, and we’re both pretty tall with big feet. Most importantly, she’s here, and she couldn’t have been created any other way. My journey to motherhood was filled with more pain than I thought I could bear, but I’d do it all over again to have this sweet child that I get to call my daughter.

Eighteen months into this parenting gig, I am more or less at peace with a whole lot of stuff that I never thought I’d be able to accept.

I have a chromosome disorder which means genetic children aren’t possible, so I chose egg donation to build my family. I can say that openly and joyfully now that I’m a parent. I can be open about the way my daughter was conceived because the irrational shame of not being able to reproduce has dissipated.

Breastfeeding has been tremendously healing in this respect. I wasn’t expecting much, so I was surprised that it came to me so easily. Being able to feed my daughter they way I hoped has restored faith in my otherwise broken body. My body can’t make a baby that will live, but it’s pretty damn good at growing and feeding them!

Over the last year and a half, I’ve spent days looking into my nursing daughter’s beautiful eyes fixed on my face — the same eyes I admired in our donor. Not recognizing any of my family of origin’s features in my daughter was, at first, strange. Sometimes she looks like her dad, sometimes she looks like our donor. To my surprise, I like seeing our donor’s influence. It’s reassuring to see something of the special woman I chose to replace my DNA reflected in my daughter.

Eighteen months into this parenting gig, I am more or less at peace with a whole lot of stuff that I never thought I’d be able to accept.

You might say I had a crash course in comfort levels, though. My daughter’s hair is a deep red, and every time we’re out three people, on average, stop us to admiringly ask if red hair runs in my family. At first the question made me wince. I didn’t know how to answer the question without also sharing the circumstances of my kid’s conception. I’ve got good at saying, “Nope! But isn’t it beautiful?” When pressed, I explain, “Red hair is a recessive gene, which means both genetic parties have to carry it.” In this way, I’m able to acknowledge my daughter’s genetic origins while not divulging too much to a stranger if I don’t feel like it.

I guess that’s what parenthood is about: constantly being surprised and having to readjust expectations, all the while practicing patience, kindness, and even finding the funny side when something’s gone wrong.

And in that sense, my infertility journey prepared me well.

Lauren is a mother via egg donation, after miscarriage, infertility, and a massive postpartum hemorrhage. She writes about her journey to motherhood and what it means to be a non-genetic parent at OnFecundThought.com. A London-born, Southern Spain-raised writer and artist, Lauren lives in San Diego with her husband and their toddler. Follow her on Twitter at @DEIVFmama and Instagram at @onfecundthought.

Picture Your Fertility: An Interactive Art Event for #MensHealth

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Chas’ story was featured in the exhibit on Thursday night at The Turek Clinic in San Francisco. Photo by Rebecca Wilkowski.

If you logged onto Facebook this past Sunday, you could not help but be reminded of two cultural events. One, the Warriors vs. Cavilers game. Two, the fact that it was Father’s Day. Both events though shared images and remembrances of healthy, strong men.

Yet, the reality is that in the American men are dying at epic numbers because of their reluctance to see the doctor and be screened for preventable disease (see Men’s Health Network). The suicide rate of men is nearly four times that of women (see AFSP). And, yet,  the United States still does not have a National Office for Men’s Health (see Men’s Health Magazine).

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Attendees at Picture Your Fertility transform specimen cups using duct tape and alphabet stickers. Photo by Rebecca Wilkowski.

Last Thursday, the ART of Infertility took a moment to draw attention to this gap in American men’s attitudes towards health and medicine. “Picture Your Fertility: An Interactive Art Event for #MensHealth” featured stories and artwork created around issues of infertility and men’s health. Below you will find some of the pieces of art created at the event, as well as some of the stories that were featured at this unique event celebrating Men’s Health Month.

A special thanks to The Turek Clinic for hosting, our media partner, Men’s Health Network Reproductive Science Center for their sponsorship, Janet Reilly for wine, Rob Clyde for his Q&A of If I Could Tell You, and all those who donated to The ART of Infertility before, during, and after the event. We’ll be sharing more photographs from the event soon. See the photos below for a little sneak peek from Rebecca Wilkowski Photography.
Dr. Paul Turek welcomes guest to the clinic.

Dr. Paul Turek welcomes guest to the clinic. Photo by Rebecca Wilkowski.

Guests could create their own comic strip. Photo by Maria Novotny.

Guests could create their own comic strip. Photo by Maria Novotny.

Rob Clyde talks about his film, If I Could Tell You.

Rob Clyde talks about his film, If I Could Tell You.

Photo by Rebecca Wilkowski.

Photo by Rebecca Wilkowski.

Artist Jamie Turri with her piece, What It Takes. Photo by Rebecca Wilkowski.

Artist Jamie Turri with her piece, What It Takes. Photo by Rebecca Wilkowski.

Living Childfree on Father’s Day – Reflections from Angela and George

Today’s blog post is a reflection on living without children after infertility. It comes to us from Angela and George. Angela attended Advocacy Day in Washington, D.C. in May and participated in one of our mini-interviews for the project. Thank you George and Angela for sharing your story.

Angela – When I first read the email about doing a guest blog I got really excited. A chance to finally tell our story as a couple. I’d long planned to do a blog from the time we started our infertility journey. I was looking forward to sharing our good news after our long struggle to get pregnant. I’d picked out a name, written a couple of entries and even shared them with some close friends. Sharing our pregnancy progression with our friends and family was a dream of mine. Unfortunately, we never had any good news to share. After a couple of IUIs, an unsuccessful IVF and countless tears and prayers, there just wasn’t anything positive to say. I had no interest in writing a blog about our “failures.”

Fast forward two years and we now have a new normal. While we haven’t talked about this officially, I imagine that we’ll be child free. We haven’t discussed our 8 frozen embryos, our dwindling infertility insurance coverage (which ends when I turn 44 in 4 days) or any plans to adopt or foster to build our family. We no longer have the funds to put toward those options. My husband has also been concerned that yet another BFN will devastate me emotionally and put me back in that dark place that I’ve fought so hard to come out of. To be honest, we really don’t talk about this at all. That in itself is somewhat painful to me, but it may be more about self and marriage preservation than anything else.

image3What is there to say about living child free on Father’s Day? I guess we could write about our current life and all the child free fun we’re going to have in the future. Traveling, burning through our kids college money and just living a life of leisure. It also meant that we’d have to actually sit down to discuss this topic that is always in the back of my mind, but very difficult to bring up.

George – I had never thought about having a Father’s Day that was childless until we were offered this opportunity to be on this blog. To me it’s not easy seeing my wife go thru the struggles of being infertile. It hasn’t been an easy road for either of us. With Father’s Day approaching, my silver lining is the fact that I’m lucky to have my own father around still and I get to celebrate it with him in person this year. There’s always that thought of, “what if I had a kid of my own,” but to me the fact that there is still something to celebrate makes things a little easier. I embrace the fact that we are infertile as though it’s what God has planned for us. We can go out and tell our story to let others know they’re not alone in this battle, and we can all come together on tough days such as Father’s Day and celebrate life, with or without kids. The bottom line is that we will always have something to celebrate even if we end up celebrating child free. We will always have each other and family to lean on during the tough times, and we can also be that shoulder to lean on for others who are just starting the struggles of infertility.image4

Angela – I’m smiling as I read his piece. I’ve often wondered what our future will look like. For so long, we talked about our babies, our plans for them and our life as a family of three or four. This is such a difficult topic to have. Wanting something so terribly and trying to accept that you may never get there. I’m delighted to know that George sees a future for us as a family of two. This journey has definitely put a strain on our marriage. I often felt like I was alone to deal with this. Reading my husband’s words prove that I’m not alone and never will be.

As George mentioned, we will continue to share our story. We want to remind people that there is life after years of dealing with infertility. Time hasn’t necessarily healed old wounds. While I’m not sure this is something you ever “get over,” I agree with my husband when he says we will continue to be a source of support for others. The two of us can be an example of what a happy, healthy, child free family can look like.

While my husband may never hear these words from our own child, we will take today to celebrate our fathers, brothers, uncles, cousins and all the dads in our lives. Happy Father’s Day to each and every one of you.

The Truth Behind Combat Related Infertility

As we celebrate #MensHealthMonth, we share a story from Crystal who describes the day her family’s life changed forever. Her fiance, Tyler, was injured while serving with the US Army’s 173rd Airborne Brigade. She shares their inspiring story on how they have fought not just for better Veteran’s care but have fought for their own family.

We salute Tyler and Crystal who remind us that infertility does not discriminate. It can impact anyone – men, women, veteran or civilian.  

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Tyler at National Mall

Tyler, pictured outside of the National Mall in Washington, D.C.

May 3, 2005 was a day that changed our lives forever. Tyler was serving with the US Army’s 173rd Airborne Brigade when his Company was called into the Arghandab River Valley to rescue their Battalion Scouts. After arriving in the valley, the Company’s Weapons Squad, where Tyler was serving as an Assistant Gunner, headed to a high point to provide support by fire. While on the hillside Tyler’s squad came under fire and within minutes Tyler was shot four times. The first bullet lodged in his spinal canal, which left him instantly paralyzed from the waist down and unable to move out of the line of fire. Tyler’s Squad Leader, SSG Matt Blaskowski and SPC Clover recognized the danger Tyler was in and despite continuous fire ran to Tyler’s aid to pull him to safety. Tyler was already paralyzed, but the second bullet was what threatened his life as it ripped through his left lung and lodged in his liver. Tyler was left fighting for his life, and without the intervention of others and a will to live he would not have survived.

Little did either of us know May 3, 2005 would set our paths to cross and ultimately lead to another big fight. Tyler and I met in 2013 when he decided it was time to move past his paralysis and return to the things he loved, sports and outdoor recreation. This is where I came in; I worked in adaptive sports for Veterans and together Tyler and I were able to rekindle his love for all that Colorado has to offer and ultimately fall in love with each other!

Shortly after Tyler and I started dating we began discussing a family and how that would be possible with his injury. This is where the biggest fight we have ever faced together began. Due to Tyler’s paralysis we quickly discovered that IVF was our only option to have a biological child of our own. Soon after, we discovered that due to a 1992 “ban” Congress put on the VA there was no coverage for this medical procedure. We were heart broken, devastated, disappointed, the list goes on, after discovering that Tyler’s wounds received in combat would present a $40,000 barrier to us fulfilling our dream of having a baby of our own and Tyler’s last step to fully reintegrating into civilian society.

Neither Tyler nor I were ready or willing to give up on this dream. He fought with everything he was to survive after May 3rd, despite all odds we found each other, were building a life together, and as a stronger team we would fight for this together. There have been so many “bad” days where anger and disappointment feel as they are taking us over in the journey to have a family, and at times complete disgust that our country, a country that you can’t walk down the street without seeing a yellow ribbon, “God Bless our Troops” sticker, or hearing “thank you for your service,” could let this man down so completely. To cope with the spinal cord injury is difficult enough, to fight for your life is enough to ask of Tyler and every other Service Member in his situation, to ask them to give up on the opportunity to pursue a family simply because politics gets in the way is absolutely unacceptable.

I have seen this man struggle through enough already; to get through life as a paraplegic is not an easy task, but he has NEVER ONCE complained about anything or regretted his service to our country until this. To ask him to give up on something he has wanted his whole life, to be called “Dad” simply because he answered the call to Duty, served honorably, and happened to be wounded in a way that prevents him from being able to pursue this dream without medical intervention is this country, this Congress, truly turning their backs on those men and women who have given so much of themselves already.

These reasons are why Tyler and I have chosen to not only find any way possible to pursue this medical treatment on our own, but to also stand against this gap in coverage and fight to both bring awareness to the issue and change policy to ensure this never happens again. The bad days are no longer consumed with anger and no where to place it, disgust and no way to overcome it, but instead we have taken this opportunity to advocate on behalf of Tyler and every other Veteran in his seat, to stand in front of Congress and give them a face to remember when they vote on the proposed legislation that would reverse this “ban.” It has become our mission to ensure Congress no longer vote on statistics related to this issue, but instead vote on faces, on families, on those men and women who they sent to war with a promise to provide health care to those who came back wounded, ill, or injured.

Tyler and Crystal training for the Ride the Rockies tour.

Tyler and Crystal training for the Ride the Rockies tour.

Tyler has done an amazing job at living life from a wheelchair, we have built an amazing life together full of support and a promising future, but this wheelchair, this bullet in his back, that should not be an excuse for Congress to deny him or anyone else in his position what Congress cherishes most themselves. When we were in DC at Advocacy Day 2016, there was a majority of Congressmen and Congresswomen that had family pictures strewn throughout their offices. This became our platform and will continue to be our motivation for change. We have a wall full of medals Tyler earned in combat, we have a wall full of pictures with us and our dogs, but what we are missing is what Congress already has, what war did not take away from them, we are missing Baby Wilson’s birthday.

If you would like to follow-along with our journey to Baby Wilson, IVF Advocacy for Veterans, please see our blog at http://www.pushmeeveryday.com