My Four-Year Break from Infertility Treatments

by Elizabeth Walker

Four years ago today, I put the final pieces of artwork on the wall and opened what became the first exhibit of The ART of Infertility.  There’s no way I could have imagined then, what this organization and the people I’ve met through it would become to me.

The remnants of my IVF retrieval and frozen embryo transfers, included in the piece, Crib with Medication Boxes.

I’d just completed my final treatment cycle, a frozen embryo transfer, which was unsuccessful. I didn’t know where I’d go next, but I knew I needed time and space to figure things out. The ART of Infertility has been that for me over these years. Even better, it has allowed me to give others their own time and space so that they may also use art as a source of healing.

In the past four years, my dear friend and co-director, Maria and I, along with a team of dedicated and passionate interns and volunteers, have traveled to 14 states and the District of Columbia (plus Switzerland) and held 22 exhibits and 23 workshops, and given 12 presentations. We’ve collected and shared hundreds of infertility stories through art.

I’m forever grateful to those of you who have supported this organization. To you who have spread the word, attended our events, allowed us to come into your homes to interview you, and have parted with your artwork so we can travel with it and share diverse stories of infertility, we thank you. To our exhibit hosts, partners, and sponsors, thank you for helping us amplify the voices and experiences of those with infertility. To our families; Scott, Kevin, and our pups­­, who miss us both when we’re home and when we’re gone, thank you for understanding what this work means to us.

We have exciting exhibits and programming this year. We just wrapped an amazing month in Salt Lake City, Utah and in Oshkosh, Wisconsin. In a matter of weeks, we’ll be in Madison, WI and we will spend the month of June in Los Angeles and the month of October in Chicago. We feel lucky every day that we get to do this work, even luckier when we’re jet-lagged and our muscles are sore from hauling suitcases, because it means we’re reaching further than we ever imagined.

I set out to be a parent, and co-parenting this organization with Maria has made every bit of my infertility journey worth it.

Check out our upcoming schedule, current calls for art, and find out how you can get involved at artofinfertility.org.

Infertile Enough?

Today I am dedicating the blog to National Infertility Awareness Week and to the launch of Justine Brooks Froelker’s latest book The Mother of Second Chances, based on her blog Ever Upward releasing on April 17th. For five weeks 25 amazing women will share their stories of infertility and loss as part of this incredible blog tour, because together we can shatter the stigma. 

Yesterday Jody shared her story and tomorrow we will hear from Heather at Beat Infertility. We would love for you to participate by sharing these posts far and wide. We’d especially love to see your own broken silence by sharing your own infertility story using the hastags: #NIAW, #infertility and #EverUpward. 

When I first started trying to conceive, I was convinced I would get pregnant immediately. When I didn’t, I wasn’t too concerned. I’d been on hormonal birth control for over a decade and it can take some time for cycles to return to normal. However, as time passed, I was feeling more and more anxious and isolated.

Having turned to a support group after my sister-in-law died, I felt like I needed one for infertility. However, I didn’t feel like I had suffered enough. I hadn’t even started taking Clomid yet. Surely the support group would include members who had been through far more than I had. Would they feel like I was making a big deal out of nothing? Did I belong there?

After a year or so, I took the plunge and attended my first group. What I learned was, that, even though there were individuals in my group who had been dealing with infertility for much longer than I had, came from different backgrounds, and were at various stages of treatment, the emotions that we had were the same. They understood me in a way that others could not.

Still, in our pain, it was easy for us to judge each other and for us to compare stories. I was in the two-week-wait of my first intrauterine insemination (IUI) when I went to that first meeting. I had insurance coverage for IUI, so my husband and I decided that we would do 3 or 4 before considering moving on to IVF.  It didn’t take long and it was time to make that decision.

I didn’t want to do IVF. I mean, no one WANTS to but I was really struggling with it. It was a tough decision. One that took me seven months in therapy to make. I was resentful of all the decisions infertility was forcing me to make. The average person decides they want to have a baby, throws birth control out the window, and before they have a chance to second guess things, is pregnant. Infertility requires us to make decisions at every turn and gives us time to doubt each decision we make.

My husband and I decided that doing one cycle of IVF was the right choice for us. Here are the meds from the retrieval and two resulting frozen embryo transfers. On display at the A/NT Gallery in Seattle, April 1 – 30, 2017.

One of the things I was struggling with the most was how others might perceive my desire to be a parent if I wasn’t willing to go to any length to become one. If I never tried IVF, and moved on to adoption or living child free after my four unsuccessful IUIs, would that make me a less infertile infertile? It was something that I joked about with my fellow support group attendees to try to ease the tension but it really wasn’t that funny.

Through therapy, I was able to come to a point where I was comfortable making the decision that I felt was best for me and for my family, even if others may judge it. Dealing with infertility taught me that no one can truly know what they will do in a situation until they are faced with it. And, the right decision for one person, will be completely the opposite for the next, and that’s okay. Just because a person wasn’t willing to exhaust every financial, physical, and emotional resource, doesn’t mean that they didn’t want to be a parent badly enough. There’s no giving up. Just choosing a new goal, based on the hand that we’ve been dealt.

Eight years after I first started trying to conceive, I haven’t completely resolved my infertility. I’m not sure if my story will end as a parent, or as someone living child free. However, I’ve found peace, and my own infertility success story, through my work with The ART of Infertility.

I no longer judge myself based on what others would think of me and that’s part of why it’s so important to me to collect and distribute diverse stories of infertility through the ART of IF oral history project. I had a choice to pursue IVF or not. However, so many people deal with financial infertility and IVF is not even an option. We don’t hear those stories and they are important.

We often hear the stories that end with a baby. However, not every infertility story ends that way and the stories that don’t are important.

Infertility doesn’t discriminate. It affects people from all races. However, as one African American woman we interviewed said, “Infertility doesn’t look like me, and that can be lonely.” The infertility stories of men and women of color are important.

Your story, no matter where you are in your journey, is important. So, please, if you are debating whether you are “infertile enough” to attend an infertility support group, you are. If you are wondering whether you’re a less infertile infertile because you are choosing adoption over IVF or drawing the line at third party reproduction, you’re not. Don’t let what others may think keep you from finding support. We all have to make our own decisions and do better to respect the decisions that others make. We are all in this together.

Redefining Infertility Success Stories

Infertility art work

Infertility success stories. We’ve all heard them. We all want to be one.

No one would argue that a journey that includes a baby and parenting is a success story. However, we at The ART of Infertility (ART of IF) believe that it’s not the only definition of infertility success.  Sometimes we find success in unexpected and beautiful ways.

In an effort to challenge perceptions of successful infertility outcomes, we’re publishing the first of what we hope will be a long line of non-traditional infertility success stories.

Reflections on Infertility Success from The ART of IF’s Elizabeth and Maria

“A successful outcome of my own experience with infertility has been the ways in which it has advanced my career. At one time, I worried about how my morning monitoring appointments might negatively affect my work. The frequency of doctor visits and the on-demand scheduling made me feel completely flaky and unreliable.”

“However, coping with my infertility by using art and writing, I started The ART of Infertility project. Working on ART of IF, I’ve had the opportunity to gather and share stories internationally. I also gained the experience in communications that allowed me to be promoted from Biomedical Photographer to Communications Specialist at The University of Michigan Medical School. I love my teams at ART of IF and at U of M and the work that I do. I wouldn’t be where I am today professionally without infertility” – Elizabeth

“When I first enrolled in college, I wanted desperately to become a physician’s assistant. In fact during high school, I spent my summer’s working at my grandfather’s urology clinic – often times accepting semen donations – an ironic memory that continues to make me laugh. Yet, as my first semester in college progressed, I found myself anxious and stressed. My science classes, while interesting, were difficult. During this time, I was also enrolled in an English writing class. Writing seemed to come naturally to me and I found happiness (and thus) success with writing.

Today, as I finish the last semester of my PhD in Rhetoric & Writing, I find myself feeling as if my higher education journey has come full circle. Studying what I call “rhetorics of infertility” and situating The ART of Infertility as a research site, I find my initial interest in health and medicine come to fruition. Here, with as a Co-Director of this project, I use our research to make arguments for more patient-centered practices of care. This work is personal and meaningful. I believe this is my new definition of success, doing work that matters and everyday has deep personal meaning. I’m pretty sure that while my infertility led me to this point, I still lucked out.” – Maria

An Infertility Success Story from Our Archive

Leanne Schuetz was diagnosed with Polycystic Ovarian Syndrome as a teenager. Even though she and her husband were in their early twenties when they began to try to conceive, it took five years, experiencing multiple miscarriages, and undergoing a series of intrauterine inseminations, before their daughter Olivia was born. While Leanne and her husband dreamed of having a lot of little ones, Olivia will be an only child.

Just over three years ago, Leanne first began creating artwork. Mixed media pieces of women who she calls “my girls”. Through this, she’s found a community outside of infertility and has truly become an artist. She’s found out first-hand how art heals. Listen to Leanne’s story, or read it, below and browse a mini gallery of her pieces to see how she’s progressed as an artist over time.

“It all started because I was really depressed because we weren’t going to do treatment again for infertility. Olivia’s going to be an only child, and I know that sounds really selfish. That we have her, you know. Like I should be so thankful that we finally had her and here I am depressed that we can’t have more kids. But I always imagined my life with lots of little ones for a really long time.”

“So, Olivia was in school full time and I still couldn’t go back to work because I wouldn’t make enough to cover the day care, even when she WAS in school. So I had all this time on my hands about what am I going to do with myself. And so, I just started doing the CitraSolv papers, which led to art journaling, which led to my girls.”

Leeanne Schuetz has used art to find out who she is outside of infertility.

“Their proportions aren’t always exactly right but that’s okay. It’s about celebrating their imperfections, and lately I’ve been thinking about, you know. I like the idea of courageous hearts – of facing where they’re at, who they are. I’m talking about them like they’re real but they’re real to me. And being okay with who they are and everything that makes them different, and special, and unique, and… Some of my girls are sad and some of them are happy. It just kind of depends on how I’m feeling that day and how they come out.”

“It’s not all about infertility. You know, some pieces definitely are because I certainly still have bad days where a pregnancy announcement will knock the wind out of me. Or the days that I remember my miscarriages and for me, I’m using art as a way to move on past infertility. It’s trying to really have a life beyond the fact that I’m infertile.”

“For so many years, I mean, years before Olivia was born, the years after Olivia was born, my whole life was revolved around infertility. So really, for me, I’m using art as a way to try to find out who I am apart from that and to discover what I like and what I don’t like.”

“I like doing mixed media, I love collage, I love acrylic paint, I love water color. I really love doing collage and I love layering. All my pieces have a lot of layers to them.”

“For the most part I never know what I’m going to make before I start. I know it’s probably going to be a girl of some sort but I don’t know who she is or what she looks like, So, just whatever I’m feeling, you know. Happier days tend to be brighter, more fun colors. I went through this phase with a lot of browns. You know, I was in a funk and I was really drawn to the browns. I love purple. Purple always ends up in my colors, I’m not really sure why.”

“I was inspired by some other artists who I met online who were really encouraging and they’ve really just been amazing. The artists online that I’m friends with, you know, because for a long time, ‘I’m not an artist, I’m not an artist,’ you know, ‘I can’t, I’m not creative, I’m not really an artist, it’s just a hobby.’”

“They’re the ones who just encouraged me saying, ‘No, you ARE an artist. This is a part of who you are and it’s okay to call yourself an artist. Even if no one ever sees your art, it’s okay to call yourself that and it’s okay to want to grow as an artist and to learn new techniques.’”

“I mean, I’m definitely a baby artist. I still have a lot to learn, but yes!”

“I’d love to be able to do some sort of workshop, teaching other women who think they can’t draw and have no skill. I’d love to be able to do something like that I’d love to, I don’t know. I have a little Etsy shop. I sell art once in a while but I know eventually I’d love to teach it to anyone who would want to learn. You know, especially I think I have a special place in my heart for people who think that they’re not artistic, for people who think they can’t do art. Because I always said I’m not artistic. My step-mom had to kind of drag me along in starting doing it and I’m really thankful for her for that because I would have never attempted it because, ‘I’m not creative’.”

“Everyone is creative. They just have to find what that is and what makes you happy, and what you like to create. And even if your art isn’t considered “good art” by anyone else, if you enjoy making it, then just keep making it.”

View more of Leanne’s work on Facebook. We’d love to hear the success, outside of becoming a parent, that has come from your own infertility journey. Share it with us and you could be featured in a future post. Help us bring inspiration and hope to others on their infertility journeys.

The Aftermath of a Male Factor Infertility Diagnosis

While we have more men sharing their stories with us through artwork and interviews these days, they’re still underrepresented in our project and in the media as a whole. By participating in Men’s Health Month, we’re hoping to shed light on how infertility affects men and encourage more men to use art as a tool in coping with their disease.

In this post from the blog archives, originally posted in July of last year, we hear from ART of IF interview participant and artist, Chas. We’re sharing his artwork at our pop-up exhibit at The Turek Clinic in San Francisco next week, and I just confirmed that he and his wife, Audrey, will be attending as well! Please plan to join us to check out the show, create something of your own at our art making stations, and enjoy food, wine, and the company of others in the infertility community, like Chas. You can get your free tickets here.
– Elizabeth

 “We would have cute kids!”

That was the line I said to my wife while we were in college. Forward? Sure. Did I mean it? Yes. Did I know it would take 3 years and 7 IUI’s to finally have a child? Definitely not.

My wife and I wanted to do the things that we felt we had to do before we had kids. You know: get married, careers, buy a house, travel, etc. It wasn’t until my college roommates had their first child in May of 2012 that we sat down and said, “We want a child. We want to experience that kind of love.”

Flash forward 3-4 months of trying, we both felt something was wrong but due to our medical coverage we had to wait a full calendar year of trying to conceive before diagnostic tests could be run. In June of 2013 we were finally referred to our reproductive endocrinologist and the tests began. All of my wife’s tests came back with nothing wrong with her, but I was a different story.

DSC_5682s

Low motility and low sperm count. That is what my semen analysis (SA) read. I was angry. How could this happen? I have never done illegal drugs, I can count on one hand the times I had smoked a cigar, I workout, eat well, take care of my body, What the hell? Did I do my fair share of the college bar scene? Sure, but it’s not like I drank a fifth of Jack Daniels a night. This had to be wrong. Then the next SA three weeks later had the same results. I couldn’t wrap my head around it. Why me?

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I was diagnosed with unexplained male factor infertility.  When I was diagnosed with male factor infertility I truly did go though the 5 stages of grief. At first I wanted more SA’s because I was a red-blooded American male and nothing could be wrong with me. Denial. Then when all 5 those SA’s came back the same I was angry at myself, and my body for failing me, with my anger directed towards anyone who crossed my path. I would snap at the littlest things and pick fights just to fight. The anger really stayed for a long time. After that came the bargaining: if I take these infertility vitamins and change my diet that should do the trick. It worked for other people it had to work for me. When the vitamins and diet change didn’t work the depression set in. This is when things got pretty bad. I was truly numb to the world. I disconnected from my wife. She would ask me a question about my day and I would give one-word answers. I couldn’t find the joy in the things I use to love doing. I didn’t want to be around anyone, I just wanted to stay home in the dark. After our 6th IUI failed during National Infertility Awareness Week 2014the acceptance finally started. My wife had posted something on a social media site that she didn’t know other people could see, outed if you will, our struggle to have a child to our friends and family. The cat was out of the bag so to speak.  After that only love and support followed from our friends and family. With that love and support we did a picture for NIAW and we also made a team for the Northern California Walk of Hope.

Chas_NIAW Having to watch my wife take pills and get injections probably was one of the worst parts of the whole IUI process.  The pills gave her hot flashes and I handled that pretty well I think. I always had something to cool her down. The injections were hard to watch. I know IVF injections are more extensive but watching her give herself Menopur injections sucked. Watching her do the pain dance, as we called it, always got to me, but the bruises afterwards would bring tears to my eyes. I had to helplessly stand by and watch as my wife had to go through this for something my body was failing to do.

The infertility community as a whole has been so amazing. My wife and I have met so many amazing people going through the challenges of infertility. I don’t think I have ever met that many people that truly pull for you to succeed in that capacity. There is such a kinship in the community that you really do have to experience it and cannot be qualified into words.

If putting my story out there can change one man’s mind for the better about Male Factor Infertility I would feel I accomplished my goal for this blog. Unfortunately, there really isn’t research and support out there for MFI. Why is it on rise? Chemical age? Maybe, but there is no concrete proof. This is especially true for unexplained MFI. There is no need to feel ashamed and disconnected from your partner no matter the diagnosis you are in this together.

Chas_Preg

Last Call for Interviews in D.C. Next Week

A week from now, Advocacy Day will be over. However, your story can be shared to promote #IFadvocacy throughout the year and beyond, by recording an interview for our oral history project. Maria and I are scheduling mini interviews on Tuesday May 10 and Wednesday May 11 and would love to hear about your infertility journey.

ART-of-Infertility-ArtifactThe interviews will be short, about 30 minutes in length including a quick photo session, and we invite you to bring along an object that helps you tell your story. Maybe it’s a photo of the embryo that became your child, the journal you kept, a necklace you bought to remember a baby you lost, or a bill from your clinic. You can read a bit about our sessions at Advocacy Day last year at this link.

If you’d like to share your story with us, please fill out the Google Form found here. After today, we’ll be looking at all of the responses we receive and will contact you with your interview time slots. Due to the tight schedule, it’s likely we won’t be able to talk to everyone while we’re in D.C., but will work with you to record your story at a later time if we can’t meet up next week.  We hope to hear from you and look forward to seeing you in D.C.!

Elizabeth

2015 Year in Review

In January of 2014, I was gearing up for my final frozen embryo transfer and curating ART of Infertility’s first exhibit at Ella Sharp Museum in my hometown of Jackson, MI. A month later, my reproductive endocrinologist transferred a gorgeous, grade 5AA blastocyst into my uterus. Unfortunately, it didn’t implant and our final attempt at a pregnancy, at least one using our own biology, was unsuccessful.

At a time when I wanted to curl up on my couch and ignore the world outside my front door, I was forced to finish interviews, write exhibit labels, and coordinate artists dropping off artwork. I was both resentful and relieved to have something to do and had no idea then that it was just the start of a project that would bring so many amazing people into my life and save me time and again.

2015 was an amazing year for ART of Infertility. We wrapped up a large scale exhibit in Michigan in January and did 8 pop-up art exhibits across the country. We held 7 art and 3 writing workshops and presented at 3 national academic conferences. Events were held in Michigan, Iowa, New Jersey, California, Arizona, Illinois, and the District of Columbia.

Creating art at our event at Busboys and Poets in Washington, D.C. in May.

Creating art at our event at Busboys and Poets in Washington, D.C. in May.

The ART of Infertility blog was launched during National Infertility Awareness Week and Maria and I have used it to share our own reflections on infertility along with stories and artwork from the project. We also welcomed 16 guest bloggers.

We conducted 39 interviews of 45 people, lobbied for infertility legislation during Advocacy Day on Capitol Hill, collaborated with Professional Writing students at Michigan State University, and hired our first intern!

Our team of Michigan delegates at Advocacy Day 2015. Left to right, Elizabeth's mother, Judy, Elizabeth, Maria, and Maria's husband, Kevin.

Our team of Michigan delegates at Advocacy Day 2015. Left to right, Elizabeth’s mother, Judy, Elizabeth, Maria, and Maria’s husband, Kevin.

35 new artists participated in the project, contributing 94 pieces of artwork, and we now have 122 pieces of art in our permanent collection.

The Smallest Things by Leanne Schuetz. First displayed at our pop-up in Arizona, this piece is now part of our permanent collection.

The Smallest Things by Leanne Schuetz. First displayed at our pop-up in Arizona, this piece is now part of our permanent collection.

We are incredibly grateful for those of you who have shared your stories through interviews and artwork and to our many volunteers and sponsors. The project would be impossible without you.

Infertility Objects by Lauree Schloss.

Infertility Objects by Lauree Schloss.

This year is already shaping up to be every bit as fulfilling and exciting. We have many possible projects and collaborations in the works but here are some of the items that are definitely on our calendar for 2016.

We’re working this month to digitize the art in our collection, making it more accessible to the public. We’re also getting our paperwork around and officially filing for our 501©(3) non-profit status. Next month, we’re teaming up with the University of Michigan Center for Reproductive Medicine, Author Robin Silbergleid, and the Ann Arbor District Library by holding a book reading and art and writing workshop.

We’ll be in Houston in early April to present an art workshop at an academic conference and collecting oral histories for the project while there. Of course, we will have something special planned for National Infertility Awareness Week. We are working on our schedule and hope to have an exciting line-up to share soon.

Our event in Calabasas, CA during National Infertility Awareness Week 2015.

Our event in Calabasas, CA during National Infertility Awareness Week 2015. Photo by Chrystal Starr Photography.

On May 11, we’ll once again be on Capitol Hill for Advocacy Day with RESOLVE: The National Infertility Association and, in October, we’ll travel to Salt Lake City for the American Society for Reproductive Medicine’s Annual Conference and events with the Utah Infertility Resource Center.

Maria and I are excited to see what the third full year of the project brings and hope you’ll join us for the journey. We’d love to share your story through the project via your artwork or an interview. If you are interested in sharing your story, or in hosting an ART of IF exhibit or workshop in your community, please contact us. We’d love to work with you!

-Elizabeth

Calling all Photographers!

Calling all Photographers!

A couple of weeks ago, Maria and I were working around my dining room table when I announced that I’m now comfortable enough to start doing some ART of IF interviews via telephone and having local photographers do the accompanying portraits. “Wow! Look who’s giving up some control,” Maria responded. “Good for you!”

It’s true that I’ve been very protective of the interview and portrait process. Maria and I have discovered that the interview and photo session are a part of the therapy and opportunity for healing that ART of IF offers. It’s an opportunity to set aside a time and space to reflect on the experience of life with infertility. Not only for our ART of IF participants, but for us as well.

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Elizabeth and ART of IF participant, Kati, on location at a shoot in Chicagoland.

The photography also helps us tell a particular story and it’s nice to do the interviews and portraits during the same session. Although I’ve dabbled in a variety of art forms in order to tell the story of my infertility, I am first and foremost a photographer. It’s been important to me to be the one to capture the project’s images. Maria and I will still be the ones conducting interviews and photos shoots when possible. However, in order for our oral history archive to grow and for us to further fulfill our mission of capturing the diverse voices and perspectives of infertility, it’s important that we let go of some control. We can’t be everywhere at once, after all.

Kati and her husband are living childfree after infertility and are very involved in planning their community's Founders Day Festival. Here's Kati on parade day.

Kati and her husband are living childfree after infertility and are very involved in planning their community’s Founders Day Festival. Here’s Kati on parade day.

So, we are reaching out to you, our community, to see if there are any of you who would be interested in volunteering and helping us with our mission, and maybe experiencing some healing around your own experience with infertility in the process. We’d like to have a database of photographers around the country, and world, who we can call on to do portraits for the project as needed. Additionally, we’d like to have a list of those who are skilled at photographing artwork and documenting events.

Sound appealing? If so, we’d love to receive some information about you, your work, and why you’d like to be a volunteer photographer with ART of Infertility. You can download the application here.

We look forward to working with you!

Elizabeth