7 Things Infertility Has Taught Me

This summer marks a milestone for my husband and me. We will be celebrating our seventh wedding anniversary. For those reading this, you may say “seven years is a milestone, since when?” I get that. But for some reason, in the back of head, I have marked 7 years of marriage with the 1950s Marilyn Monroe film “The Seven Year Itch.” I’m not completely sure why, but for me, approaching seven years of marriage is significant because of this film. As I reflect on this some more, especially as July 24th – our wedding anniversary – approaches, it dawned on me that most of year seven’s significance can be attributed to infertility.

A photo of the two of us on our wedding day back in 2010.

I know that itch. That itch to walk out. Give up. Say ‘”forget this”, maybe I could have a different life — a different family with a different partner. Luckily, that didn’t happen. But I remember vivid nights where Kevin and I sat in bed asking ourselves “where do we go from here?” That lurk of infertility has certainly forced us to define and, even, fight for our relationship to go forward. Seven years and still no kid. Seven years and still that lurking question – is this our family? Or should we keep fighting for a child of our own.

To be frank, we haven’t been able to honestly answer that question yet. More time, more soul searching is needed. Will we live childfree? Can we live childfree and be happy? Perhaps. But still the question – “what would it be like to be a parent with you?” – lurks in our marriage.

Despite the uncertainty, I have come to the realization that I have actually learned a lot. Here are seven things infertility has taught me:

#7 Patience. I grew up with a timeline and goals in mind. For example, right before I turned 13, my parents asked me if I wanted a bike for my birthday. My immediate answer, without hesitation, was: “No, save the money. I’ll be 16 in 3 years and I want a car.” As entitled as that now sounds, that was me. I knew what I wanted and when. So, when Kevin and I got married – we both knew that we wanted a family. But when we started having trouble conceiving, and eventually learned we were infertile, it was complete and utter shock to the system. I didn’t know how to process it. I didn’t know how life couldn’t work on my schedule. Patience, I eventually had to learn. To this day, I am still learning that skill. Seven years – I’ve learned that life simply cannot be planned. Better to embrace its craziness than try to control what can’t be controlled.

#6 Pain. I don’t show pain well or much. Growing up as the oldest of a large family, I always felt some unknown pressure to be strong, to be tough, to not show sadness or grief. But when my aunt suddenly died when I was 20, I began to realize the need to grieve. Kevin and I were together at this point. After the funeral and all of the ceremonies, I vividly remember breaking down in his arms. We were alone, and I was finally safe to grieve. During that moment, I learned how safe I felt to have a partner to confide in. I learned how relieved I could feel to just cry. This lesson has carried with me as I have had to confront infertility. The feeling of safety, of being able to be vulnerable with Kevin, would come into play again and again. Pain shouldn’t be ignored. Sometimes it needs to be felt. With tears comes healing.

#5 Laughter. Despite all of the pain and sadness that comes with infertility, I have had to learn to not just laugh at some of the moments I encounter but also embrace laughter as a cheap form of therapy. There have been moments when I have shared in laughter with a support group friend’s experience at the fertility clinic. Laughing at moments only we – the IF community can understand. There have also been moments of laughter lately when I get my period. While in the past, I used to cry. I now have recently started laughing at the slightest appearance of blood. Of course, I think to myself, I’m not pregnant. My god- why would I be?! These moments of laughter aren’t well recognized by those who don’t experience the daily – yearly- grind of not being able to “just get knocked up” but finding friends who “get it” have become an invaluable part of this journey. Laughter has helped keep my sanity.

#4 Humility. While I live with infertility, I also study it. Infertility is not just my life, it is my job. Studying infertility rhetorically, reviewing the studies and articles that circulate in the academic and scholarly world, I’ve become appalled at how infertility as an experience is described as a “woman’s deep primal desire to get pregnant by any means” to fertility treatment and adoption practices described as “a lottery in which women will nearly cut each other’s throats just to become a mother”. These types of descriptions do not describe me nor the hundreds of other infertile women that I have met along my journey. This work, both as a profession and as a part of my life, has taught me that infertility is a real human experience. It is not well understood nor well represented. These past six years, getting my PhD on infertility rhetorics, has only reinforced the need to bring the humility back to infertility.

#3 Appreciation. While my infertility journey has undoubtedly left me in a limbo-esque state, I have learned to appreciate the little things. I have learned to appreciate when a friend of mine tries to tell me that she is pregnant or trying to get pregnant. While it may not come across in the best or most appropriate manner, I appreciate the effort they went through in at least trying to be sensitive to my needs. I appreciate the texts I get from my sister on Mother’s Day. While she is not a mother, she tells me that she is thinking of me on this day and knows it is hard. I appreciate the endless wagging tails and licks that my dogs give me every time that I open my front door. “Mom is home,” those manners demonstrate. Most of all, I appreciate the childlike sense of imagination I get to embrace on a daily basis. More of that in #2…

#2 Imagination. Okay, let’s be real. When you are first diagnosed with infertility, you do not think “oh this is the perfect time to reimagine my life.” NO. Most of us are crying, sobbing with our partners, cursing out the world, wondering what the hell we did to deserve this. But then time comes. And with time, comes lessons and learning. And with me, a sense to embrace imagination. I admit, my case is not the most typical. When I diagnosed at 24, I wasn’t like “Oh, let’s beat this. Let’s do anything it takes to get pregnant.” I needed time. Time to process what infertility meant, what infertility meant to me, what infertility meant to my partner, what infertility meant to us as a couple. And so, we took time. And are still taking time. But with time, we have allowed ourselves to play and reimagine what we want from life. We have considered if we want to adopt, if we want to use a donor embryo, or if we want to be a couple that lives childfree. And while we are still in the process of imaging different versions of our life, I have learned to embrace imagination. It has allowed me to connect to a childlike state that I may not get to know with my own child, but am reminded that I can still be personally connected to.

#1 Love your partner. Finally, and perhaps above all else, infertility these past seven years has taught me how to love my partner. And I mean love. Infertility has required me to ask “Is this relationship all worth it?” infertility has asked me to question what I am worth fighting for. Infertility has asked me to learn patience – not just for my own needs but how to be patient with what my partner may need. Infertility has taught me how to rekindle a sex life that, let’s be frank, gets screwed over (no pun intended) after being diagnosed with IF. Infertility has taught me that despite it all – kids or no kids – we walk this path together, we find laughter where we can, we cry when we want to cry, we appreciate that we have each other, we recognize that we are sometimes just human – not perfect, we imagine what type of life we now want to have and most of all – we love each other through it all

A photo of ourselves from a 2016 we both participated in. Weddings always make us think back to how far we have come because infertility. How about yourself?

That’s what 7 years of IF have taught me, what are some things you have learned in your journey?

 

Music Heals: Finding Happiness When a Marriage Struggles to Conceive

In this post, Maria and her husband, Kevin, reflect on the role music has had in their relationship, particularly in regards to their infertility. Discussing their recent following of country rock star, Eric Church, the two reveal how listening and connecting to music has allowed them to find happiness in their marriage after infertility. While The ART of Infertility encourages creative making, this post reminds us that surrounding oneself around creative processes – like attending concerts – can also help us heal after coping with infertility.

This Memorial Day Kevin and I didn’t go to the local parade. We didn’t attend any barbecue parties at a friend’s home. We saw music. Live, southern rock-inspired, Nashville music. And it was epic.

Maria and Kevin take a selfie while in Nashville over Memorial Day.

To understand the impact of this experience, to understand how this relates to our infertility, to our marriage, I need to go back some years.

When my husband and I first met, we were in high school. We were young, really young — like 15 and in love. Too young for our relationship to be taken seriously by our parents and friends, we frequently sought to escape the world and the limits that our youth put on our relationship. Often we did so by jumping in Kevin’s old Volvo, turning on the radio or popping in a mixed CD and just driving. We drove all over, for hours. Sometimes we would stop at a state park or forest to hike. Sometimes we stopped for ice cream. Sometimes we would stop, just to stop, and talk about us — what we wanted and who we wanted to become together.

At Maria’s high school graduation, 18-years-old and in love – eager to go to college, get married and start a family.

Memorial Day weekend was often a weekend when we would hop in the car and drive away for an escape. To this day, we both recall Memorial Day of 2004. We were both 18 and had just finished our junior year of high school. That weekend, Kevin picked me up for another drive. With the Wisconsin weather finally in the 60s, we decided to stop at a Kettle Moraine State Park to hike a bit. On that hour drive, we can both recall listening to a local radio’s classic rock countdown. We remember driving rolling glacier carved roads listening to Lynyrd Skynyrd, The Grateful Dead, The Allman Brothers, Bob Seger and our personal favorite – Led Zeppelin.

Kevin and I could listen for hours to Led Zeppelin. Their music threaded us together. We both felt passionately connected to the melodies and to the lyrics. Zeppelin was not only a band that we enjoyed, it was a band that connected us on a deeper, intimate level.

As we got older and our relationship evolved, time and the pressures of college and “the real world” got to us. We started dabbling in other music. But every time that Zeppelin came on the radio, Kev and I were sure to turn it up. Singing along and reminiscing about the memories we had listening to them in high school. Even at our wedding, it was joked that Zeppelin’s heavy, metal-esque “Immigrant Song” should have been our wedding song. And, if we could have figured out a way to dance to that, it probably would have.

But it was not until early this year that Kevin and I began to realize how the music, once so integrate and vital to our relationship, had suddenly stopped. Listening to music. Going to live shows. Connecting to melodies and lyrics suddenly disappeared as we struggled to conceive. Our world, our relationship, went silent.

For about the first five years, when we were trying to grasp, cope and then figure out our infertility – neither Kevin nor myself can remember what (if anything) we listened to. During this time, our marriage also struggled. We didn’t know if we wanted to do fertility treatments. We didn’t know if we should start to adopt. We didn’t know – if we were happy – even if we should still stay together. Our world as a couple was dark and silent.

Despite these feelings and concerns about our happiness, we determined one late night in bed that we should stick it out. We determined that we still loved each other. That even without the prospective of having a kid, we could still be happy in our marriage. We could still find happiness – even if we couldn’t find it at this moment.

Life pressed on, and our relationship slowly began to get better with the understanding that we were both committed to figuring it out and making it work. We moved states, Kevin changed careers, I finally finished grad school and we started to feel happier again. Through all of these changes, we also found new music that resonated with us just like Zeppelin did back when we were teens.

Neither Kevin nor myself would classify ourselves as country song lovers. But one day as we were driving we heard a song by Eric Church on the radio. The two of us looked at each other and you could feel that same spark we had back when we were listening to “Going to California” by Zeppelin. It just hit us at our souls.

Last August, after listening to every song and learning nearly every lyric, we decided to finally see Eric perform in person. We flew out to Colorado and saw his now legendary performance at Red Rocks. Not having seen a concert together in nearly 10 years, Kev and I were admittedly a bit suspicious. We didn’t know if the $300 tickets we bought were really worth it nor the plane tickets and Airbnb rental. But when the sun went down over the rocks and the single spotlight hit Eric – a new musical melody fused Kevin and me together once more. We were hooked, like a drug.

At Red Rocks Amphitheater to see Eric Church perform, August 2016.

The morning after the concert, we looked at each other and talked about how the happiness we were feeling in our marriage. How we actually did this. How we went through hell and back – still with no kid – but had our marriage, had our vibe, had our connection once more. Suddenly, it hit us – music heals. It heals for those who write and compose lyrics and melodies. It also heals those who listen and who are engaged in the performance of its spectacle.

As we returned back to the Midwest that august, Kevin and I determined to make 2017 our year for music. We vowed that we wouldn’t worry or talk about the next steps with our IF. Instead, we would take steps to renew our marriage. So, in January of 2017 as Eric went on tour, we did our own mini tour. Seeing him perform in Green Bay, Portland, Milwaukee, and two Nashville encore sets.

Eric’s tour is now over. And, in many ways, so is the one Kevin and I have been on. Throughout his tour, which has broken attendance records and has allowed him to play 40+ songs at every venue, Eric has repeatedly made it clear that this tour is because of the fans. It is because of the fans that he is able to go on stage without an opening act and perform to sell out crowds for 4+ hours. Kevin and I want to make it clear though, that while Eric may be thankful to the fans that have given him this opportunity of a lifetime, Eric’s influence on his fans should not be forgotten.

A photo Maria took of Eric performing in Nashville at the closing of his tour.

With the tour now concluded, Kevin and I wanted to take a moment to thank thank him for reminding us of the importance of music in marriage, relationships and life. Music heals.

 

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 Holiday Blues

 

This short reflection is a few years old. I wrote it after being recently diagnosed. The holiday season was fast approaching at this time, creating a lot of anxiety.  Re-reading this reflection, I am quickly transported to a place of deep pain. The reflection seems like a distant memory, yet, also hauntingly familiar. Many of the feelings and thoughts are still there. The only difference is that they appear less frequently and not in the same velocity as they did when I first wrote this reflection. Today, I wonder, when did I stop fighting my infertility and begin to embrace it? And why did I choose surviving infertility over fighting for a family? – Maria

The Holiday Blues

The holidays have always been special to my husband and I. This is when we first met. When we first started dating. When we got engaged. When we told our families we were getting married. When we bought our first house. When we got our first puppy.

An image of our first puppy, Stella. We picked her up from the shelter the on New Year's Eve. She was symbolic of a new year, new life.

An image of our first puppy, Stella. We picked her up from the shelter on New Year’s Eve in 2010. She was symbolic of a new year, new life.

Lately though, we’ve been needing to rely on those memories in order to escape feeling the holiday blues. Now, as we find ourselves in this new place, this new understanding of what it means to be a married childless couple, we have needed to question what this means.

This year we decided to volunteer for Thanksgiving. To visit with the elderly. We thought this to be a great idea as it avoids feeling the constant reminder of this childless lack. And by volunteering we felt a great bond with Bob, Mary, and Ethel. All three did not have a family to visit them. They were very much on their own. Feeling many of the same emotions we felt. Not sadness, not loneliness. Just acceptance of this is how life was to be. Finding meaning and special joy in little things. Little things like having the café at the nursing home open and simply visiting with those who silently felt the same acceptance towards life.

But Christmas and Thanksgiving are two very different holidays. Thanksgiving is reflective and about the food and blessings that you have. Christmas is projective. It is very much about “another year.” And more often than not it is about children. Baby Jesus and manger scenes. Promoting a redemptive and celebratory message about the power of the baby.

It is also about kids and the “magical joy” of Christmas. Kids waking up Christmas morning and running to the tree. Screaming at the excitement at finding an Xbox or Easy Bake Oven – but more often simply screaming because Santa arrived and provided.

This has become clear to us over the years that we’ve been married. Each year, it seems harder for us to embrace the spirit of the holidays. We know this and often comment on it. “What are we going to do to make the holiday’s special for us?” we ask each other.

We come up with different ideas to make it special. Often times it is simply going for a drive to see the lights and reliving the memories of us doing this when we were younger, before we were married – when we looked to the future of family with hope and excitement.

Now though, it is more common than not to experience the holiday blues.

christmasphoto_2016

While we still find it difficult to celebrate the holidays, we make sure to send out a holiday card each year. This card is from this year. We make a point to stress that while we may not have children, we are a family.

In fact, the puppy that we got around the holidays is no longer with us. Five years have past since I last wrote this reflection. Her passing reminds us of how we could have our own 5-year-old at this point in our life. Our own child eagerly waiting to find presents under the tree. Instead though we are still trying to make sense of it all. Still trying to find joy in the little, non-traditional family we made.

When I hear “Blue Christmas” by Elvis on the radio, I am transported to the moment I wrote this reflection. Sometimes it is nice to be reminded that while the holidays can be a time of joy, they can also heighten personal pains.

Embarking on the Holidays: A Thanksgiving Reflection from Maria

This week marks the beginning of the 2016 holiday season. For many of us, this means time spent with family. Memories are often made over the sharing of a meal and laughter at the table. But this time is also a reminder of how another year has passed without a family of your own. Here, at The ART of Infertility, we wanted to take this week and reflect on the joys and pains that Thanksgiving brings. Today, we share some thoughts from Maria. Tomorrow, Elizabeth will offer her insights. And on Thursday, we offer some tips on how to survive the holidays while dealing with infertility and grieving loss. We hope that in sharing our stories you feel less alone this holiday season. 

Cooking Thanksgiving dinner a few years ago.

Cooking Thanksgiving dinner a few years ago.

Infertility and the holidays are simply the worst. I wish that I had another phrase or expression to really represent the anxiety, frustration and sadness that comes with the holiday season when you are infertile. But, I don’t. All I can say is that infertility and the holidays are the worst.  On a daily basis you are reminded – consciously and subconsciously that you are infertile. From the family Christmas cards arriving in your mail, to nativity scenes displayed around town celebrating immaculate conception, to even the holiday weight gain in which you may look like you are early in your pregnancy but really had a bit too many cookies and holiday punch. Infertility and the holidays are the worst.

And so, when the week of Thanksgiving begins, so do the daily reminders of infertility. On top of that, with Thanksgiving, there is extra pressure to give thanks.

Give thanks?!?! For what?! My body that refuses to become pregnant? The thousands of personal and professional decisions I have had to make because of my infertility? The baby that I still do not have? The reality that I may never be a mother, that my husband may never be a dad?

The list of questions could go on. But you all know – when you sit around the table and are going on year 2, 3, 4 even 6 or 7 of your infertility – it becomes harder and harder to find something you are genuinely thankful for.

Kevin and I got our dog, Gia, over Thanksgiving one year.

Kevin and I got our dog, Gia, over Thanksgiving one year.

Talking to Elizabeth recently about the reality that giving thanks is hard when you are infertile, I came to the realization that I do have a few things that I am thankful for. I am thankful that I am still married to my husband. Infertility has been hard on us as a couple. It has forced us to talk about a lot of things couples/partners who are fertile do not need to talk nor even think about.

And I am thankful that despite all of the challenges we have faced, that we decided we still wanted to be together. I am also thankful that I no longer feel that deep despair that I felt when initially diagnosed. You know, that feeling like you will always be crying, always be angry, never be able to smile at a young baby. I felt that way for a long, long time. And today, I am thankful that I allowed myself to feel those feelings and slowly get used to figuring out what it means to be infertile. Today, while it is still not easy to see a mom with her newborn or get a baby shower invitation in the mail, I am no longer angry or upset to the point where I feel like I can’t go on. I can. I have all of you – my fellow infertile warriors. And for that, I am thankful to know that I am not alone.

-Maria

We Are Strong Women

No matter who you voted for, waking up last Wednesday morning morning it was clear: the world has been changed. For Elizabeth and me, this took on particular meaning as we finalized our presentation for Merck KGaA’s As One For employee education day, an event devoted to Merck staff understanding the perspectives of patients using their products.

We made the trip to Switzerland with six suitcases and two backpacks full of art and supplies.

We made the trip to Switzerland with six suitcases and two backpacks full of art and supplies.

Sitting in our Coinsins, Switzerland L’Auberge Salon (aka – our small but quaint hotel room) – we decided to devote this presentation to all the infertile women who have had to struggle to fight for their dreams, fight for their passions, fight for a child. In honor of all of you who have graciously shared either your time, resources or both to The ART of Infertility – we dedicate this to you – the infertile but ever strong woman.

Here is a bit about our own personal stories and how we have found strength in our infertility.

-Maria

Elizabeth’s Story.

My husband Scott and I met on New Year’s Eve 1999, married in May of 2004, and five years later, decided to add to our family by having a baby.

I went off the birth control pill in March of 2009 and started charting my cycles. My chart was a mess. Definitely not what you want your chart to look like while trying to conceive. By fall, my chart was looking better but I was finding that the time between ovulating and starting my period wasn’t long enough to be optimal for implantation and to sustain a pregnancy.

My first chart off birth control.

My first chart off birth control.

Right around that time, Scott’s sister, Shelley, got sick. She was the recently divorced mom of three little girls. The girls began spending Shelley’s custody days with us. Suddenly we were thrown in to sleepovers, play dates, homework, and bath time. We were the ones to tuck them in at night, soothe them when they woke up from nightmares, and nurse them back to health when they were sick. The circumstances were terrible, but having them living with us was one of the very best experiences of my life. Sadly, Shelley died in January of 2010.

That March, their dad moved them to Minnesota. With the girls nearly 600 miles away, we were devastated. This was made even worse by the fact that it had been over a year since we started trying to conceive and we were officially dealing with infertility. I wondered if the time that the girls lived with us would be the only time we’d ever parent. We needed to see a doctor to get started with testing and treatment but took some time to heal first. Well meaning friends and family, not knowing we were trying to conceive and unsuccessful, suggested that having a child of our own might help us heal. While we wanted a baby, it was no replacement for the precious nieces that we were longing for.

By the end of the year, we were ready. At Thanksgiving, I was headed to testing and my sister she announced she was pregnant her second month of trying to conceive. We spent Christmas of 2010 with the girls in a hotel in Minneapolis. The entire trip, I was receiving test results and scheduling more appointments.

Between the end of 2010 and the end of 2012, I was diagnosed with Luteal Phase Defect, Endometriosis, and Diminished Ovarian Reserve. We endured five rounds of oral meds with timed intercourse, four intra-uterine inseminations with oral and injectable drugs, I had a diagnostic laparoscopy, and I joined a RESOLVE: The National Infertility Association support group and then became the group’s host.

What I personally found hardest about infertility was being stuck in limbo as my friends and family had children, all the decisions that infertility forces you to make, and the fact that it’s an invisible disease. In order to make my infertility visible, I started creating artwork.

roses

The first piece of artwork I made during my IF journey.

The first piece created out of my infertility journey, made while on medical leave after an exploratory laparoscopy to remove polyps and endometriosis.

I learned that others were also using artwork to deal with infertility and in fall of 2012, pitched an “infertility art exhibit” to the Ella Sharp Museum in Jackson, Michigan, where I live. The exhibit would provide educational info on infertility, display the environmental portraits, artwork and stories of those living with infertility, and offer an art workshop.  They said yes.

Early 2013 brought our one and only IVF cycle. My retrieval led to complications (internal bleeding and ovarian torsion) for which I needed emergency surgery. After I recovered, we transferred two of our three resulting grade 5AA blastocysts. I got pregnant, but miscarried twins early on. This all happened between the middle of February and June 1st and I needed a break after all we’d been through.

I spent the rest of the year working on the exhibit, compiling facts, making artwork, and photographing exhibit participants. I wanted to show them participating in activities other than infertility that defined them.

What I personally found hardest about infertility was being stuck in limbo as my friends and family had children, all the decisions that infertility forces you to make, and the fact that it’s an invisible disease. In order to make my infertility visible, I started creating artwork.

In February of 2014, we transferred our last embryo and I didn’t get pregnant. My husband and I had reached the end of our journey in attempting to have children that are genetically ours. We needed time to grieve and regroup with the idea that we may eventually move on to living child free or adopting from foster care. Two and a half years later, we’re still working on healing from all we dealt with. We need a bit more time to come to terms with what we’ve been through, and rebuild our relationship. However, I am starting to feel the pressure of time and the need to make a decision about how we will resolve our infertility. We are still considering living child free, especially since we have such a close relationship with the nieces we parented for a time. We are also considering using donor embryo, an option that I started considering after hearing the story of Noah and Maya, who I interviewed for the project.

In March of 2014, The ART of IF: Navigating the Journey of Infertility opened at the Ella Sharp Museum. Along with raising awareness about infertility through the art exhibit, I began lobbying for infertility legislation on Capitol Hill with my first trip to Advocacy Day in D.C. that May, where I met Maria Novotny.

Maria’s Story.

This is where my infertility story begins – at yes, believe it or not, the age of 15. I met Kevin, my now husband, at this age. Throughout high school and college, Kevin and I dated on and off. Ultimately, upon graduation we decided to get married. Both of us came from big families. In fact, my family was so large that my parents actually had my brother when I was 18. So the idea of being infertile NEVER crossed my mind. In fact, I was often warned that I would be “too” fertile. This was a joke at the time, but now is all too ironic.

Kevin and Maria with family on their wedding day.

Kevin and Maria with family on their wedding day.

After marrying at the age of 23, we moved to MI for Kevin’s job and bought a house. Soon we began nesting, adopting dogs and shortly after decided to “try”….

Months passed and nothing. No success. A year passed. And we knew something was wrong. I booked an appointment with my OB/GYN. Tests came back and it was suggested we go to our local fertility center.

We attended a consultation and left feeling completely overwhelmed. We were 24 and grappling not only with the numerous options available as well as financial cost – but also with the fact that we were trying to understand our new infertile identity. We felt paralyzed. We were living in a new state. We had no family near us. And we had few close friends. So, we decided to look for support…

But couldn’t find anything. Desperate just to meet someone else who was infertile, we turned to the internet and “came out” with our infertility. We shared our story on our local city’s newspaper and asked others if they too needed support. Slowly but surely, we began to connect with others looking for a safe space to deal with issues in a city that was rated by Forbes Magazine as “the #1 place to raise a family.”

infertility-support-grand-rapids

At this time, I found myself needing to document my infertility journey. I felt a deep desire to capture the complex and confusing feelings that I was experiencing. So I began to write. Doing so, I wrote several pieces. One of which is titled The House, a piece now in The ART of Infertility which reflects on the house my husband and I bought prior to learning about our infertility.

As I began to do more creative writing pieces, I felt an increasing connection to return to school. As a college student, I majored in English. Learning how writing could help with emotional and physical healing, I started a Master’s program focused on writing and the teaching of writing. Graduate school became a place where I could escape the pressures of not conceiving, of not becoming a mom.

We attended a consultation and left feeling completely overwhelmed. We were 24 and grappling not only with the numerous options available as well as financial cost – but also with the fact that we were trying to understand our new infertile identity. We felt paralyzed. We were living in a new state. We had no family near us. And we had little to few close friends. So, we decided to look for support…

Today, I am in the last year of my schooling – finishing my PhD in an area that I call “rhetorics of infertility” which explores how writing and art are composition practices communicating the challenges women and men face when diagnosed with infertility.

And so, while I currently am not in treatment, nor am I pregnant – I still am very much in limbo. Very much in a place of not knowing what my next move should be. I am 30 now. I have lived the past 6 years knowing that I am infertile. But the need to make a decision about what to do next is so overwhelming that I am secretly hoping it will work itself out, that my husband and I won’t have to make a decision. This hope is what we call “limbo” – the not knowing of infertility and the sheer exhaustion that comes with its disease.

***

While we both have decisions to make about further growing our families, through ART of IF, Elizabeth and I have found more happiness, and peace than either of us has had in years. The connections that we have made with other infertile individuals and families, the work that we do in helping them along their journeys, and the awareness about the patient experience that we are able to raise, has given us fulfillment. For both of us, this project turned organization has become the baby that neither one of us could have.

We shared these stories with Merck employees, followed by a Q & A. Upon doing so, our co-presenter, a fertility specialist in the UK, concluded the session. She reminded all of us that while infertility can be difficult to learn about – both in terms of its sadness and depressing nature – we need to remember that infertility can make those dealing with it stronger. She spoke to the fact that The ART of Infertility is a testament to this. That when women face adversity, they can create beautiful things. We – the infertile – are strong (and powerful) women. We were very touched by her words and the important reminder that is especially relevant in this post-election time that we are now living. Let us not forget that our challenges have the potential to make us stronger and, through the lives we live and the work we do, we have the ability to make a positive impact on our own lives and the lives of those around us.

How have you found strength in your infertility journey? We would love for you to share it with us.

After traveling all night, we arrive at Merck to drop off the exhibit supplies.

After traveling all night, we arrive at Merck to drop off the exhibit supplies.

 

 

 

The ART of Infertility as a Research Project

by Maria Novotny

As Elizabeth mentioned in last week’s blog post, we have been a bit quiet this summer. And as you may have learned from reading her post, while we were quiet, we certainly were busy both personally and professionally.

This summer I spent the majority of my time working on my dissertation titled, The ART of Infertility: Conceiving a Participatory Health Intervention Community. As some of you may know, I am fourth year PhD student in Rhetoric & Writing at Michigan State University. My research then looks at how women navigate an infertility diagnosis and use art as method of personal reflection and activism (read more at my website).

This coming May I will graduate and hopefully take a job as an assistant professor of writing and rhetoric at a university somewhere in the United States. My responsibilities in this role would include teaching writing courses ranging from health and medical writing to rhetorical research methods and multimodal composition. But – to first receive a job offer – I need to have a completed dissertation. Hence, a summer of writing all about infertility.

Waking each morning knowing that I would once again be thinking and theorizing about infertility allowed me to really take time to process my own journey. I actually went back to graduate school when my husband and I were first having trouble getting pregnant. As an English major in college, I had always wanted to go and receive my master’s degree so that I could teach at the collegiate level. With no pregnancy on the horizon, and having just moved to a new state for Kevin’s job, I applied and was accepted into Michigan State’s Critical Studies in Literacy and Pedagogy Master’s program.

In this program, I spent two years taking graduate level composition and education courses as well as teaching sections first-year writing. All the while, I quietly continued to try and get pregnant naturally. Graduate school was simply another distraction, until I enrolled in a course titled “Queer Rhetorics.”

Reading Hennessy’s article made me think how much infertility is tied to the production of materiality – literally being capable of producing a child. What happens though when our bodies can’t make a baby?

This course shifted my entire professional identity. As I read books and articles for this class, I started to see my own struggle with feeling often – abnormal. Especially in the case of sex. Few, if anyone I knew, could understand how messed up my sex life was because of infertility. But in reading queer theory, I could begin to find traces of myself in the other stories shared with me.

I began to eventually write reflections on the connections I was making to infertility and began to feel energized in sharing my own struggles and finding a space for infertility in my studies. In fact, part of my final project of this course resulted in several pieces of creative writing. For example, “The House” is a short vignette that is part of The ART of Infertility’s exhibit. My engagement in this course led me to apply for a PhD in Rhetoric & Writing – and long story short — ended up once again at MSU.

For the past fours years now, I have been writing, researching and presenting on what I call “rhetorics of infertility” which examines the meaning-making process of navigating an infertility diagnosis. Partnering with The ART of Infertility allowed me to explore this topic further by looking at how multimodal composition, such as creating art, opens spaces for personal validation as well surfaces a desire to use art as a method of activism.

Facilitating a micro workshop in Houston with the Coalition of Feminist Scholars in the History of Rhetoric and Composition

Facilitating a micro workshop in Houston with the Coalition of Feminist Scholars in the History of Rhetoric and Composition

As I begin my last year in graduate school, I still am not pregnant nor am I in treatment. But I am part of a wonderful organization – The ART of Infertility. And look forward to continuing this research as a co-director with Elizabeth. Through this partnership, we look forward to building a digital archive to provide greater access to narratives and artwork we have collected for the infertility community as a resource for support groups.

As a project that uses art exhibitions as a method to translate embodied, and often invisible or unrecognized challenges of an infertility diagnosis, we hope to continue bringing the exhibit to a variety of audiences. This summer, we were fortunate enough to travel to The Turek Clinic and share this work with physicians, fertility specialists and therapists. And this fall, we are thrilled to announce that we will be traveling internationally to present the exhibition for Merck’s Patient Day in Switzerland on November 9th. The purpose of Patient Day is to help educate staff members about the experience of infertility, and the other diseases and conditions, treated by the pharmaceuticals made by Merck.

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We’ll be flying into Geneva and look forward to collecting infertility stories in the surrounding areas while in Europe.

We haven’t finalized our exact travel dates yet, but for those who follow us in Europe, we will be on your continent for the second week in November, give or take.  Please contact us at info@artofinfertilty.org if you would like to be interviewed for the project.

And thank you to all who have supported this project throughout its journey. Elizabeth and I are truly amazed at your continued enthusiasm for this organization.

Myth: Advocacy Day is Over and The Work Is Done

This past Wednesday Elizabeth, myself and several hundreds of other infertility professionals and infertile individuals met with our representatives asking them to support The Veterans Amendment to the Senate Appropriations Mil-Con Bill. This bill would provide funding for the VA to offer IVF to wounded veterans. Currently, the VA does not provide IVF coverage to our Veterans. You can learn more about this injustice hereWe just learned that the Senate will be voting on this issue this week! And so, our #IFAdvocacy work is not over — it is just beginning! Please take time this week to contact your Senators and urge them to support this very important bill! 

Below, we are busting the myth that Advocacy Day is just a one-day event. We provide reflections on Advocacy Day and some strategies to help you encourage those in your infertility support network to continue this important advocacy work all year long.

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Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

tapper

Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

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Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Let’s Remember Advocacy Day Is Just the Beginning

Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

tapper

Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

13230315_10154236330306742_2925500788373099402_n

Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

 

 

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Myth: You’re Alone in Your Infertility Journey

When I was first diagnosed with infertility, I felt like I was living on my own deserted island. It wasn’t that I didn’t want to tell people about how overwhelmed, sad, and lost that I was feeling. It was that I didn’t know who I could tell that would understand. I remember telling one of my good friends to which they responded, “Oh, don’t worry Maria. It will happen, you guys are young. You just have to give it time.”

I remember thinking, “No, you don’t understand. You don’t know how difficult it is for me to even get out of bed in the morning. You don’t know how upset I get when I see a pregnant woman pushing a cart in the grocery store. You don’t know how angry I get when I see a family taking a walk around my block. You just don’t know how deeply these little, everyday activities can trigger feelings of intense sadness.”

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Maria, with her husband Kevin, who have now lived most of their 5-year marriage with infertility.

For a while I didn’t think I would meet anyone who would understand how I was feeling. And so I started to isolate myself – from my family, friends, even partially from my husband. I felt that I didn’t have anything to worthy to contribute to conversations or events, so I just removed myself from them.

My feelings of wanting isolation, however, began to change when I made the decision to attend RESOLVE’s Advocacy Day in 2014. Tired of living on this so called “infertile desert island,” I convinced my husband to make the drive from Grand Rapids, MI to Washington, D.C. to maybe start doing something about my frustration and isolation rather than just complain about how I was feeling.

How one decision can change your life. Seriously.

While at Advocacy Day I began to feel like I was taking action to not just change my life but the life of thousands of other infertile men and women silently suffering with the disease, the most impactful takeaway were the friendships that I formed. Particularly, my friendship with Elizabeth Walker.

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Maria and Elizabeth in San Francisco, CA in July 2015 for the ART of Infertility.

For Elizabeth and me May 2014 was our first Advocacy Day. Both of us were representing the state of MI and so we spent most of the day together walking the halls of Congress handing out letters and asking our representatives to sponsor infertility related bills. Perhaps it was the experience of doing something totally out of your everyday that helped form such a strong bond. Or perhaps it was simply a friendship that was suppose to be. But whatever it was – Elizabeth and I both knew that we found another person who we could confide in and who simply got one another.

Since Advocacy Day in 2014, Elizabeth and I have worked together on the ART of Infertility. Traveling to numerous states, hosting art and writing workshops, dropping in at prominent fertility clinics to talk about the project, talking about infertility at academic conferences, and even mentoring young college interns about infertility. We are busy but being busy has also saved me – made me feel like I am being productive, no longer wallowing away on my infertility island.

I often think what my life would be like if I never met Elizabeth. Thinking about this, I get lost and overwhelmed. Our friendship has been integral to my healing, to my strength and to my commitment to always advocate on the behalf of those who are infertile. She has become not just my infertile sister, she’s simply Liz – my big sis.

And so while there are a million different reasons to consider attending Advocacy Day this year on May 11th, one of the most powerful reasons to attend is because it could quite literally change your life through the friendships you may form. If I never met Elizabeth that May 2014 during Advocacy Day, my life would not be what it is today. So, I encourage you all – if you are feeling alone, in despair, frustrated and ready to make a change – come to Advocacy Day where you will be greeted by hundreds of other infertile women and men who understand exactly how you are feeling. You will be amazed.

Advocacy Day isn’t just about coming together to advocate for infertility rights, it is also about coming together as a group that has been told their stories shouldn’t be told, their stories don’t count enough to be considered for legislative action. It is a coming together as a force of women and men who have become friends from across the U.S. to change how we think, talk, and support issues of infertility. Advocacy Day is powerful as it is a pure embodied display of how the coming together of friendships can make change.

Join us!

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Maria and Elizabeth outside the Capital Building during Advocacy Day 2015.