Undeniable Proof of Infertility – Memorializing a Journey

Traveling with this project, Elizabeth and I have had the privilege to listen and learn about all of you and your infertility stories. More recently, a few of you have been kind enough to share your stories and art with me for my dissertation “The ART of Infertility: A Community Project Rhetorically Conceiving Failed Fertility.” This dissertation emerged out of my collaborative partnership with Elizabeth and The ART of Infertility.

Being moved by meeting all of you, I sought to write a dissertation that did not scandalize infertility. Rather, I wanted to write a dissertation that honored the difficult journey we all need to endure because of infertility.  Simply, I wanted to share your stories and remind others that infertility matters. It may not be well-understood, but art can be a method to make visible the stories our infertile bodies carry.

As I finished writing my dissertation a few weeks ago, my body began to feel drained. Writing your stories, reflecting on my own infertility, the dissertation itself felt as if I had just given birth. Even my husband was exhausted! It has been an act of mental, emotional and financial labor — something many of us in the infertility world can understand. To memorialize this sense of fatigue, I created “72 Red Tears: Undeniable Proof.” It sums up the 72 periods that have come and gone in the process of writing this dissertation. I share the piece below as an homage to my infertility journey, as well as a thank you to all of you who have influenced not only this piece of scholarship but who have shaped who I am today: A Strong, Infertile, Woman — now with a PhD — because of all of you.

72 Red Tears: Undeniable Proof
Maria Novotny
acrylic on canvas

72 Tears: Undeniable Proof

I was young, 24 years-old, when I first encountered difficulties conceiving. Not ready to face the facts that I may need to undergo fertility treatments if I ever wanted to carry a child on my own, I decided to go to graduate school. It was my escape where I quietly hoped and prayed that by some magic power I would naturally become pregnant. Yet, as time passed on, I had to slowly face the fact that magic nor graduate school would make me become pregnant.

“72 Red Tears: Undeniable Proof” is a data-visualization of the six years, twelve months and 72 periods that serve as undeniable proof of my infertility. During the first few years, when I began my period tears would trickle down my face. I mourned the sadness that yet another month had passed without conception. However, as time passed and to hear the stories of others who have had to live with infertility, my own strength increased. No longer did every period begin with tears running down my face.

I made this piece shortly after I turned in my dissertation to my committee. It serves as an homage to the journey I have taken both professionally and personally as I work to make experiences of infertility better understood.

The Poetry of Two Women in their Own Voices

It’s National Infertility Awareness Week (#niaw) and this year’s theme is #listenup. We’re kicking off the week with two poems from our archive. You can listen to the poetry below to hear perspectives from Tamsin and Michelle. Do you have a poem you’ve written about your experience? We’d love for you to record it and send it to us! #artspeaks #artheals

Tamsin Prasad
My Nightmare

Tamsin with her pup at their home in Northern California

“We don’t have insurance coverage for infertility. It’s added stress and guilt that my body is costing us so much money. We moved here with my husband’s work and I’m trying to get licensure as a marriage and family therapist so I’m doing unpaid hours at the moment. It just seems like my fault because my husband is working and his body is working as it should be. I feel like I take a lot of it on myself really.”

“I got my website up and running and did some photography and some poetry and just kind of surprised myself with all of the creativity that was coming out. My therapist kind of likened it to birthing my artistic self. It’s been quite a big thing. It’s been really helpful, I think. Even more so with the poetry. I’ve been writing not just about the infertility but stuff that’s happened in my life and my childhood and friends and I think it’s just brought up so much emotion that’s been cleared out that I didn’t even realize was there to be cleansed so that was really good.”

Michelle Baranowski
The Middle Place

Michelle, right, with her wife Mandy on their wedding day.

While other kids were saying they wanted to be an astronaut or a princess, Michelle always wanted to be a mom. She could have never guessed at that age that she would not be able to accomplish her lifelong dream of conceiving a child. As she grew up, her childhood innocence was shattered and she realized that it was never going to be as easy as she thought it would be.

When Michelle was a young adult she came out as a lesbian so she knew that there was going to be a less “organic” way for her to conceive. She just knew she was going to have to go about becoming a mother in a different way. Still, she believed that it would happen and couldn’t foresee the struggles that she was going to face in the future to accomplish her lifelong dream.

She is now 30 years old and, after years of trying, she has still not had the ability to get pregnant. It has been a long journey of pain and sorrow, as well as constantly getting her hopes up only to have them smashed by each negative result. She feels as if she is just coexisting in the middle place between pure joy and devastating pain, which is something that many people dealing with infertility can relate too. She decided to share her poem with others so that they can catch a glimpse of what she is feeling as she continues on this journey to having a child.

#startasking How creating art can bring healing on your infertility journey.

For the last day of #NIAW, we wanted to reflect on why we find creating art helpful in our journeys.

Elizabeth

I’ve had a complicated relationship with my house over the past couple of years. My husband, Scott, and I bought it shortly after we married nearly 12 years ago and made the move across town from the house I purchased as a single woman, to this one where we imagined we might raise a child one day. We chose it because of the school district and because the walk out basement was reminiscent of Scott’s childhood home, and the archways and poured plaster walls reminiscent of mine. We walked in and immediately felt we belonged there.

Several years later, when it became apparent that having a child wasn’t going to come easily, I had a dream of recurrent house flooding. Water seeped in through the roughly textured walls and pooled on the hardwood floors. I was in the upstairs hall and trying to keep the water at bay when I heard a chorus of whispers. A chorus I soon realized was the voices of my house itself, resentful of us and acting out because we weren’t filling the house with children.

Even though I still love my home for many reasons, I started resenting it and the fact that it wasn’t fulfilling the purpose we thought it would when we first moved in 11 years ago.

Maria and I recently had a conversation about how our homes have taken on a different purpose and meaning due to our infertility and living in them as families of two. It got us thinking about nesting, which inspired me to create some artwork around that theme. I made this piece, my “Inhospitable Nest” around the memory of that dream years ago. Choosing the materials for this piece and setting aside time to create it was very calming. Weaving the wire in and out was a meditative process and, while I don’t always end up with a product that looks like it did in my head, this one did. Better even. It made me want to create more nests. I’ve since created two more that I will share with you in the coming weeks.

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Inhospitable Nest. Elizabeth Walker. Mixed media – copper wire, crystals.

Creating artwork around my infertility experience has allowed me to have tangible proof of my diagnosis. My disease is so invisible to those around me and making artwork that represents it has made it real to me and to those who see it. That’s been invaluable to me in coming to terms with my diagnosis and to explaining it to others, and why I’m so grateful we get to help others create pieces around their own infertility experiences during our ART of IF workshops. So, I encourage you to #startasking how making art might help you in your journey and would love to see what you create.

Maria

This September my husband and I will both turn 30. We actually were born exactly 2 weeks apart – Kevin on the 15th and me on the 1st. Since I was little, I remember the story of my birth. I was the first granddaughter to be born on both sides of my family, so my birth was rather exciting. My uncle always told me how it was a hot day in September and how ironic it was that I was actually born on Labor Day. For years, I grew up assuming Labor Day was about women giving birth — never considering how it was actually about the US labor force. I just assumed that I was special because of being born on this day.

As I have come to accept my infertility, though, I have come to think less and less that it was special that I was born on Labor Day. I actually think it is some kind of bad joke. This year, my actual birth day won’t happen on Labor Day. But as I turn 30, I have been thinking about how I now longer fit in with so many of my friends and family members who are now entering their 30s and having their own families. Kevin and I both talk about this, trying to develop strategies to cope with the increasing feeling we are loosing our closest friends.

I wanted to use the last day of #NIAW to share some pieces of art that reflect these feelings of loss. Many of our friends and family members post pictures of their family outings and announcements. In the height of my infertility, this would have enraged me. Now, with some years past, I am no longer angry but instead just deeply sad — knowing this will most likely not be our story, knowing that we are growing more and more distant with these friends and family members, knowing that there are days that its hard for me to recognize that deep desire I had to have a child. Below are some images I am using to create shadow boxes. I am trying to “play” on the other types of family photos that often fill my Facebook and Instagram feeds. The captions articulate the sentiment I feel in each of these images.

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This photo was taken right when Kevin and I started realizing we were having trouble conceiving. We had been living in Cleveland and decided to make a trip back to Wisconsin to visit family. Here, I am pictured actually with my little brother. We are 18 years apart and when I would babysit him and take him to restaurants or run errands — people often assumed he was my child not my mothers. I think back to the times when I would carry him in his baby seat and think that is quite often the closest I will come to feeling like a mom.

 

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I love this picture. While it looks like Kevin is holding a baby who just finished a bath, it is actually a cut out of him holding our new puppy — Mason. We had just picked up Mason from a farm in Southwest Michigan. He was smelly , dirty and had proceeded to throw up all over the car on the drive back to our house. We was so timid and tiny. Today, he is our 65 pound black lab. But he remains so gentle and eager to please. His presence in our life has made our whole navigation of infertility so much more bearable.

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This picture was taken in September 2013. I had just started my PhD program. Meanwhile, a friend of mine from my MA program had just had a baby. Kevin and I went over to their house to meet the newborn. I remember holding that baby and posing for that picture feeling so incredibly sad that we would never take our own family picture.

#startasking: How Infertility Prepared Me to Be a Mom – Camille’s Perspective

Camille Hawkins, MSW, LCSW is the Executive Director of Utah Infertility Resource Center. She reflects on her experience with infertility and shares 5 ways her infertility struggle taught her to be a great mom to her daughters. This post does contain images of babies and parenting. Thank you for sharing your insights, Camille!

I was recently part of a discussion in a “Pregnancy & Parenting after Infertility” Support group. The question was posed: Would you change the fact that you struggled with infertility?

How would life be different if I didn’t struggle with infertility? Even though this was the most difficult experience of my entire life, would I change it? It brought more heart ache, more tears, took more energy, and also more money than any other trial I’ve faced.

The consensus as each group member deeply reflected on this question was a resounding no. If you would have asked each of them in the heat of the struggle, the answer would have been different. But the common theme was that they had gained so much from their infertility journey, and there were still some very difficult parts about it, but they wouldn’t trade it.

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Camille pictured with her infant daughter.

My husband and I met at Utah State University in 2007. Once married, we waited a year to start trying to have a baby. We quickly learned it wouldn’t come easy. After 5 years of tracking monthly cycles, timed intercourse, surgery, fertility medications, injections, intra-uterine inseminations, in vitro fertilizations, a miscarriage, and being completely broken down emotionally, we became parents to two beautiful girls through the miracle of adoption. Becoming a mom was the best day of my entire life. I will never forget that feeling.

Even though my life is now consumed of changing diapers, making bottles, and rocking crying babies during the night, my infertility will always be a part of me. My diagnosis makes it so I will always be infertile. The wound of infertility may be healed in my heart, but the scar will always be there as a reminder of all I went through to get my girls. This journey has shaped my life more than anything else has. It helped me be the best mom I could be.

Here are 5 ways my infertility struggles taught me to be a great mom to my daughters.

  1. Peace – coming to accept my situation was difficult and took a lot of time and energy. I had to grieve every time I had a failed cycle, a failed treatment, grieve the death of my embryos, and the loss of my only pregnancy. I had to grieve having a biological child –the one I always dreamed of looking just like my darling husband. As a woman, I had to grieve not being able to experience pregnancy, child birth, breast feeding, and the things I was raised to most closely associate with womanhood. Through this process, frustration and resentment for my imperfect body eventually turned to peace and acceptance. I learned that things aren’t going to be perfect in life, but I can still be okay. I will teach my daughters their bodies are unique and special, and don’t have to be perfect in order to be beautiful. I will help them find peace and acceptance with the situations they find themselves in so they can look for the happiness and joy that surrounds them.
  1. Balance – I grew up in a culture that taught my most important and divine role would be that of a mother. Everything should revolve around that role, even my education, my career choices, everything. When I realized I was unable to conform to that norm, I was forced to either sit around and do nothing while the time passed, or do something productive with my time. I decided to get a master’s degree in social work and begin a career in counseling. I worked at a nonprofit community mental health center helping children heal from trauma. I volunteered with an organization running kids grief groups. I fell in love with my husband over and over again, traveled the world, and I became a dog mom, enjoying the beautiful outdoors hiking with my two retrievers. Infertility tends to consume you completely, like a black hole. The lows were the lowest I could ever imagine. Learning to keep balance in my life was crucial to surviving the black hole of infertility, and I’m learning that balance as a mom is crucial to being the best mom I can be to my daughters. I would like my daughters to have balance in their lives too, and to know it’s okay to be lots of things, do to lots of things, and most importantly to take care of themselves.
  1. Patience – Infertility makes you wait…….and wait……..and wait some more. It makes you cry night after night, feeling hopeless and that all is lost. False hope is sometimes the only thing you have left. I learned that things don’t work out necessarily in the way I expect, but it’s possible for them to work out in some way. My mom told me I was a very impatient child. I wanted things NOW! Patience is something I was forced into learning through my infertility journey. Now as a mother, patience is my saving grace. Motherhood is not easy; I never said it was going to be. Having patience shoved down my throat during infertility has allowed me to see things in motherhood through a different lens. I can make it through my baby’s crying spell. I can make it through my daughter refusing to sleep throughout the night. I can make it through two babies crying at once……Infertility helped me learn the patience for these moments.
  1. Appreciation – When you yearn for a child, you yearn for the good and the bad. Being a mother isn’t easy, but I realize I appreciate all the moments so much more than I would have because I worked so hard to get there. My girls will grow up knowing how much they were wanted, how much they were sought for, and how special they are. I know I am so lucky, so blessed, and so fortunate to be “Mamma” to my sweet baby girls. I have so much gratitude for their birth families for entrusting us to raise these little girls.

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    Camille with her two girls and husband.

  1. Determination –I have met many women who struggle with infertility and I have found that these are some of the strongest women in the world. My husband and I experienced failure month after month, year after year, and still we pressed on. We did this because family is so important to us and we would not stop until we became parents. I learned I can do hard things, and my daughters will learn they can do hard things too. When I face failure and frustrations in motherhood, I remind myself of the obstacles I have overcome and rely on that strength to get me through hard times.

The journey of infertility is treacherous. No one deserves the pain that comes from an inability to get or remain pregnant when that is their deepest desire. The wound of infertility often runs deep. But there is hope. There is a lot we can learn. And we can have tremendous growth which can prepare us to be great parents when that glorious day finally comes.

 

 

 

#startasking How does infertility impact loved ones?

Infertility doesn’t just impact the patient but their entire family and social circle as well. Family relationships can be particularly difficult to navigate after an infertility diagnosis. I asked my mother, Judy Horn, to write a blog post reflecting on how it feels to have a loved one with infertility. She shares her thoughts below. Thanks, Mom, for sharing your story.

– Elizabeth

In the late 1980s, when my daughters were small, I watched a movie on television. The story line was of a family with four daughters. As the story unfolded three of the daughters were either pregnant or had children and it was apparent that the other daughter was struggling with infertility. It was a Lifetime movie, full of drama and at the conclusion had a typical happy ending. I can remember thinking of my girls and hoping that I never had to deal with that situation. For some reason, perhaps a vague premonition of events to come, I never forgot that movie. And so today, nearly thirty years later, I am sitting at my computer trying to find the adequate words to describe what it is like to have a loved one with infertility.

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A Polaroid of Judy with Elizabeth at her kindergarten registration in the early 1980s.

When my daughter Elizabeth finally told me about her struggle with infertility she was a couple of years into it. I can remember immediately thinking that this would be an easy fix. She was working with a doctor and I was pretty confident that they would find a solution and before I knew it she would be pregnant. At the time I had no idea how complicated it would become and how low the success rate is. I can remember waiting for months for information. Because of the nature of this disease and because Elizabeth was like most women dealing with infertility, we didn’t talk much about the process, so, I began searching the internet for any information I could on the subject of infertility.  When I would see or talk to her I would look for any indication that she was or was not pregnant and as the months passed the assurance I had felt before about the “easy fix” began to evaporate. I became frustrated and just wanted to do something, anything that would help, but there was nothing I could really do. At one point I began to feel guilty and wonder if in some way this was my fault, that I had done something during my pregnancy that resulted in Elizabeth’s infertility.

I often worry about saying the wrong thing, about saying something unintentionally that will be hurtful or inappropriate. There is a list of words and phrases not to say to someone dealing with infertility, but sometimes it’s difficult to remember and I know I’ve said things without thinking. When that happens, I feel so bad and I get angry with myself for not getting it right. Once the words are out, there is nothing that can take them back and never the right words to express my regret for speaking them.

I began to feel guilty and wonder if in some way this was my fault.

Eventually, three years ago Elizabeth did become pregnant. We were going away together on a weekend trip and when I stopped by to pick her up, for some reason I had a good feeling she was pregnant. She said nothing about it, but when I had to give her an injection that evening, I was even surer that I was right. The next day we went shopping and I sat while she tried on clothing and enjoyed the fashion show. The good feeling grew as I noted the number of shorts and skirts that had elastic or drawstring waists. Sadly, the good feeling would not last more than a few more hours. Elizabeth had gone for blood work that morning and received a call as we were shopping that her numbers were down and the two little ones that had implanted after IVF were no longer living. We drove back to the hotel in silence, Liz crying quietly and me struggling to concentrate on my driving as the tears blurred my vision. I spent that afternoon watching her sleep, feeling helpless and useless, knowing there was nothing to do but just be there and that seemed incredibly insignificant.

Elizabeth and Judy at Antiques Roadshow in Detroit, the day after learning of Elizabeth's miscarriage.

Elizabeth and Judy at Antiques Roadshow in Detroit, the day after learning of Elizabeth’s miscarriage.

Several months later Elizabeth had her last embryo transfer. It was unsuccessful. I have five living grandchildren that give so much happiness. I am thankful for them every day. However, I will forever be reminded of Elizabeth’s children and mourn their loss. There is a list that will never end of things that I will miss with them. I will never give them a bath or have the joy of watching them grow, run my fingers through their soft hair, tell them how much I love them or hear their sweet voices. I will always long to know what they would have looked like and I will never forget them.

There are many words I could use to describe the past five years. Just of few of them are disappointment, guilt, worry, regret, loss, love and balance. Balance because I have to balance my feelings about all of this and remember to appreciate the good things and not dwell too much on the sadness. I have much to be thankful for.

Last and most importantly, I love her so much and I am proud. I am so proud of Elizabeth and how she has taken a personal tragedy and made it into something that will help others cope with their own heartaches. In just two years ART of Infertility, an exhibit she created, has helped others tell their stories and deal with their own infertility journeys. It has grown into an organization that educates, raises awareness and provides a creative outlet and a community of support for those experiencing the effects of their own infertility disease. I will never know how many people she has touched with her work or the effect that it will have on them and the lives of others, but I am confident that this legacy she is creating will be long-lasting and a catalyst for positive change for many years to come.

#StartAsking: What is #NIAW?

Over the course of this year, we, at the ART of Infertility have been busy generating new content to connect you with stories and artwork representative of infant loss, miscarriage and infertility advocacy. We have been grateful for how many of you have shared these stories on your social media pages and have engaged through commentary with this content.

This week, though, it may seem that we are a bit quieter than usual. And this is for a reason — we will be prepping stories for National Infertility Awareness Week (#NIAW).

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Beginning April 24 – April 30 (#NIAW week), we will be featuring a host of stories asking the general public to #startasking about issues and topics related to infertility — a topic that often isn’t thought of until you find yourself going through it. Given how so many fail to really realize what infertility is until they are confronted with it in their own lives, our mission during this week be to reach out to those who often have very little contact with the topic of infertility.

While many of us in the infertility community frequently share our stories and try to make infertility more visible to the general public, we believe that #NIAW offers a unique moment to connect with those who often are not infertile and ask them to join us in becoming an infertility ally.

To provide a little preview we are sharing with you all a little more information about what #NIAW is and how to begin #startasking. We ask that you, too, share this across your networks and invite future allys to engage in the conversation!

Danielle, our social media college intern, provides some #NIAW info on how others (like herself who are not infertile) can join the conversation:

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Why #NIAW?  This week is all about spreading awareness of infertility issues to people who may not be sure of what it exactly it means. Not only is it a time for people to bond over their stories and situations, it is also a time to create a conversation that can educate people on all different aspects of infertility. Many people go through issues when trying to conceive and this is the week to spread the word. You can learn more about how support the infertility community here.

What does #NIAW talk about? One message that is important to spread to others during this week is that many people go through struggles when trying to create a family and that it is okay to talk about it. When I first joined this project, I was an outsider who did not realize how many people are affected with these issues. The amount shocked me and I wondered why I didn’t know it before. It seems that many people do not feel comfortable sharing their stories because they don’t want to admit to people that they are going through fertility treatments because it would make them feel judged or “less than”. This is completely understandable because when people don’t know anything about a topic they usually resort to myths and stereotypes that are not true. This is the week to challenge those stereotypes and to give people a better understanding of the reality of infertility.

How can I become an #NIAW ally?  Ultimately, this week is all about community. It is a time where many people connect with others and create lifelong bonds and friendships that they might be lacking in other aspects of their life. Going through infertility is something that many people can’t possibly understand or relate to because they have not gone through it themselves or are uneducated on the topic. This week allows people the opportunity to meet others who understand exactly what they are going through and can talk about their situations free of judgment. It is also creating a new community with family and friends who may not be aware of the anger, frustration, and many other emotions linked to fertility problems. By starting the conversation with them, they will have the ability to learn about the emotional rollercoaster and the medical terms and conditions that surround infertility. You can check out RESOLVE: The National Infertility Association’s website for a list of tips and resources for individuals to become better educated on the topic of infertility.

How Can We Keep the #NIAW Conversation Going? Once this week is done, it is important to not let the conversation about infertility die off until this time next year. By continuing to talk and raise awareness for the issue, many people are going to feel better about discussing their own issues, allowing the infertility community to grow and expand which will give people the courage and support that they might need. Taking the opportunity to talk about infertility in your daily life will help relieve the stigmas and bring attention to the important matter. And, remember, you can always #startasking!

We look forward to launching #NIAW with you on April 24th and invite you to always #startasking!