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.

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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.

5 Reasons Why Being Young and Infertile is Hard

by Maria Novotny

I met my husband when I was 15 at a “Thanksgiving Day” themed dance. We dated on and off in high school, but I always knew that I would end up marrying him. We would spend hours on the phone in high school, talking about what we wanted from life and how crazy it was that we wanted a lot of the same things. One of those things was a family.

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Maria and Kevin on their wedding day. Photo by Sarah Stephens Photography.

After a few more years of dating, he finally moved to the state where I was going to college. We soon got engaged, both graduated, and shortly after got married. Both of us were 23 and ready to start a family. We couldn’t wait. We both came from large families – he was the oldest of 4 and I was the oldest of 6. We moved states, bought a house and started making plans to nest.

But we soon realized these plans were all but a dream. After a year of trying to conceive (TTC), we finally received our infertility diagnosis. I was crushed. He was crushed. How could this be? We were both only 24!

The rest of our twenties were spent going to doctor appointments, researching adoption options, starting an infertility support group, beginning a research on “rhetoric of infertility,” partnering up with the ART of Infertility, and basically deciding that it is okay to wait on building that dream we talked about and hoped for at 23.

On the front stoop of their first home.

On the front stoop of their first home.

Today, as we both embark on entering our thirties, I can’t help but think through the struggle of being under 30 and infertile. Being so young, many people struggle to really comprehend the fact that you can be young, healthy and yet still have trouble conceiving.

Here are the 5 Reasons I think Being Young & Infertile Is Hard (in no particular order):

1. Doctors (& our culture at large) always said that TTC when you are young would only help your chances. Growing up, we are told that we need to protect our fertility. That we need to be careful not to “accidentally” get pregnant. So when you receive an infertility diagnosis, rage –  at the stories we’ve been told to “always use protection”  – can fill your body. “How could I have trouble getting pregnant? I thought I was doing the right thing by trying early?” This confusion, pain and frustration at the perceived “myth of fertility” frequently entered my consciousness when I was diagnosed at 24.

2. I was told that you could (& probably should) plan your pregnancies. I grew up with a bunch of sisters – all of whom are close in age to me. We are each other’s best friends. And so, when I decided to start a family, I wanted to have not just one child but many. I thought by starting young that I could replicate the same type of childhood experiences I shared with my sisters. I could have my first baby at 24 then have the next one at 26 and then the next at 28. A two year gap seemed to make sense to me. But once I realized that I would have trouble even having just one child, I had to completely rethink this plan. I was devastated that I would not have the same type of family unit that I had grown up in.

3. A lot of my girlfriends – were not married – let alone TTC. When we first were TTC, many of my girlfriends were not even in relationships. They were all trying to meet a guy while I was trying to have my ovaries meet some sperm. I felt completely distant and detached from these friends who a few years ago had stood up in my wedding. No one seemed to understand why I was emotional when I saw a mom walking her baby down the street. And they really didn’t understand why I was peeing on ovulation strips every morning. I felt like I wasn’t just losing my hopes for a family, but losing a lot of my close friends.

4. Being Newly Married & Infertile Sucks. When you are recently married, having trouble conceiving puts a lot of pressure on your marriage. Being newlyweds can be hard enough. Put infertility in the mix and it can rock the strong foundation you thought the two of you had. For one, infertility messes up your sex life! Instead of “having fun” with your man, you are creating “sex calendars” and synching your biological schedule to your work schedule. Sex sucks and that never helps any marriage – especially one that is just starting out.

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 5. “A baby will come, you just need to relax. You’re not even 30 yet.” Everyone tells you that you have time, to take a vacation, to just enjoy life. Here is the deal – when you want a baby, when you made a commitment in front of hundreds of people that you and your partner are going to have a family, you want that to happen when you want it to happen. You don’t want to wait. You don’t want to let “time” be in control. When you know that you want a family, you want a family – nothing is going to stop you. And so when you realize things beyond your control are impeding your dream, you feel mad, angry and just pissed-off at the world and everyone else who seems to just “magically” get pregnant. You feel like life isn’t fair, and eventually you come to realize that it actually just isn’t fair. Plain and simple – being young and infertile sucks.

Healing through Reading – Eight of our Favorite (In)fertility Books

Recently, Maria and I were reflecting on some of the books that have helped us at various stages in our journeys. We thought we’d share just a handful of them with you today.

Elizabeth

Maria’s Picks

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Empty Cradle: Infertility in America From Colonial Times to the Present by Margaret Marsh and Wanda Ronner

Infertility around the Globe: New Thinking on Childlessness, Gender, and Reproductive Technologies edited by Marcia C. Inhorn and Frank Van Balen infertility around the globe

These were the first “academic” books that I found when I first became interested in studying infertility for graduate school I remember feeling excited that I could take all of the pain I was feeling by TTC and try to make arguments for changing the stigma that surrounds infertility. Today, as I write my dissertation on the rhetorics of infertility, I continue to rely on these authors and their arguments about the silence, shame and stigma surrounding infertility.

 

Taking Charge of your fertility

Taking Charge of Your Fertility, 10th Anniversary Edition: The Definitive Guide to Natural Birth Control, Pregnancy Achievement, and Reproductive Health

This book immediately takes me back to when I was first TTC. I had finally shared my struggle to get pregnant with my family. On a trip back to WI, my parents hosted a family dinner. At the dinner, my grandmother pulled me aside and gave me this book. She told me that a few of my relatives had also struggled to get pregnant and that this was a book that they highly recommended. I remembered feeling loved by my grandmother because of her thoughtfulness and I was reminded that it wasn’t just me that wanted to have a baby – my whole family did.

 

what he can expect

What He Can Expect When She’s Not Expecting: How to Support Your Wife, Save Your Marriage, and Conquer Infertility!

I first purchased this book about a year and a half into TTC. I was depressed, angry, and unhappy. I loved my husband but being in a marriage seemed like a constant reminder of something that we were missing out on – a baby, a family. I knew that my attitude and sadness had taken a toll on me and, importantly, my husband. I bought this book and gave it to him as an apology. He was trying to love me the best that he could, even though I didn’t know what I wanted or needed. Seeing this book today reminds me of all the trials and obstacles we faced throughout our 5 years of marriage. Today, I know that the deep love I have for my husband is due very much to ability to face infertility.

 

Elizabeth’s Picks

About What Was Lost

About What Was Lost: 20 Writers on Miscarriage, Healing, and Hope Edited by Jessica Berger Gross

Although only one of the stories in this book deals specifically with infertility, reading it was essential to me beginning to process the grief around my own miscarriage. I had put off dealing with my emotions about losing my pregnancy because I was still dealing with the trauma from the emergency surgery that was required after complications from my egg retrieval caused ovarian torsion and internal bleeding. As I read the stories of other women through the essays in this book, I thought of my own story and how I could interpret my experience and make sense of what had happened to me.

 

The Baby Book

The Baby Book by Robin Silbergleid    

There’s something just so incredibly powerful about the experience of infertility expressed through the format of poetry. For me, sitting down with this book creates a quiet space to reflect on my own journey, and it has helped me come to terms with my diagnosis and how it’s made me who I am today.

 

 

 

 

Infertility and the Creative Spirit

Infertility and the Creative Spirit by Roxane Head Dinkin and Robert J. Dinkin

One of the themes that I’ve been interested in exploring through ART of Infertility is the many ways that we can contribute to our communities and leave legacies without having children.  I love this book because it explores the ways that seven prominent women in history found creative outlets for their journeys, impacting the world we live in today.

 

 

 

Silent Sorority

Silent Sorority: A (Barren) Woman Gets Busy, Angry, Lost and Found by Pamela Mahoney Tsigdinos

While those of us with an infertility diagnosis all have our own unique stories, we experience the same kinds of emotions. I read this book quite early in my journey and felt I had truly found someone who understood me. Pamela was speaking my language! I wanted to make it required reading for all of my friends and family so they would understand what I was going through.

Why Share Your Infertility Story?

When do you make the decision “to come out” with your infertility?

This is a difficult and risky decision that is never made lightly.

Reflecting back on my own grappling with this question, it has dawned on me that while I feel rather “out” with my infertile identity — I am still forced to think about this question on a daily basis.

Maria Novotny sharing her story at the Examined Life Conference in Iowa City.

Maria Novotny sharing her story at the Examined Life Conference in Iowa City.

In fact, I continually find myself in new situations where I need to quickly assess if, how, and when I share with others my infertile identity.

Common examples include:
• A student of mine notices that I’m married and asks, “Ms. NJ, do you have any kids of your own?”
OR
• When a new neighbor moves in down the street and comments, “We love the idea of raising a family in this neighborhood. Do you guys have any kids?”

Over the years, I have tried to be more honest when asked such questions and invite a conversation with others about the realities, struggles, and even funny moments one experiences with infertility. But it is still hard to wear my infertility on my sleeve.

This brings me to why I love #NIAW. This is a week where not only am I reminded that I am not alone in these experiences but that there is power in sharing your story. When we share our stories of infertility, we disrupt commonly held beliefs that it is easy to get pregnant, that women can always control their fertility, and that infertility impacts many, many lives.

When we share our infertility stories with others, we increase general awareness and better inform the greater population about the realities of (in)fertility. In coming together as a community and telling our stories, we break the bubble on many commonly held assumptions. We ask others to no longer:

• Assume that our degree of femininity can be measured by our fertility;
• Assume that infertility can always be fixed through medical treatments and/or adoption;
• Assume that infertility only effects women ages 35+;
• Assume that infertility is only a white, middle-class issue;
• And (most importantly) assume that the decision to share your story is not a ploy to elicit pity but a decision made because infertility is an identity you deeply live everyday.

Moreover, while telling our stories can be difficult, it can bring healing and even laughter. And we can tell our stories in many different forms – through poetry, artwork, even a conversation at the grocery store. That is the wonderful fact about stories, they are accessible and can be communicated and represented in many different forms.

Take the image generated below.

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This is one of the many ways that I tell my infertility story. Playing with the genre of the pregnancy announcement, I disrupt commonly held expectations about my body and my marriage. The image is intended to trigger feelings of disorientation to those who do not live with infertility on a daily-basis. And what I love most about this image, is that not only does it generate a message but it elicits an emotional response. It stops people. It makes people rethink the impact a pregnancy or baby announcement may have on an infertile woman. In many ways, it invites those who aren’t infertile to experience the disorientation, silence, and sadness often accompanied with infertility.

And so, as #NIAW comes to a close, I invite you to ponder how your infertility story can contribute to spreading awareness to others about the realities of infertility. And even if you do not feel comfortable or able to share your story with others, I invite you to take a moment this week and try to create a piece of art, a line of poetry, or a even a short story that documents your own infertility journey. Infertility can often be described as hopeless, isolating, and frustrating – but in crafting your story you can also find moments of laughter and moments of personal growth. By representing and reflecting on your infertility story, I hope you may find a path to healing and most of all a path to laughter.