Myth: You’re Alone in Your Infertility Journey

Posted on April 18, 2016 by admin

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.”

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.

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!

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

Advocacy Day Reflections from Jennifer

Posted on April 5, 2016 by admin

A few weeks ago I decide to take a last minute trip to Columbus, OH. While there, I was able to interview Jennifer. Jennifer was diagnosed with PCOS and Endometriosis and dealt with years of infertility before a successful IUI and the birth of her daughter, Kathryn. For the past few years, Jennifer and her husband have been trying IUIs again. Below, Jennifer reflects on Advocacy Day and why she makes the trip to Washington, D.C. each year. Thanks, Jennifer, for sharing your story.

Elizabeth

“At first I went because three of my friends were going. I was like, oh, it’s going to be a fun girls trip. I think sometimes I’m a fairly cynical person so I don’t necessarily always think that our voice is heard and that the senator really cares, but going in there and telling them what we need, what we want, and that there is a need for infertility coverage and the adoption credit, I felt so empowered. In control almost. Like I could take back control and I didn’t expect to feel that. It was a lot more emotional than I thought it would be. I think I probably did cry at some point on that day and I didn’t expect that at all. I really didn’t. I’m always sort of using humor as my natural defense and sort of hide stuff so I was really shocked by how emotional I was that first Advocacy Day.”

“One of the things that I came away with the first time I went to Advocacy Day that never even entered my mind was that if, in twenty years, my daughter is infertile for whatever reason, whether it’s her, or her spouse, or whatever, that I could do this for her. It hit me like a ton of bricks. I could fight for her so that she never has to know this pain. So that’s why I keep doing it. More than for myself or for anything.”

“I thought I was going to make a difference for myself. That I was doing it because of my journey and what I went through. I just started thinking about Kathryn and if anything I do on that day can make it easier for her, if she HAS to walk this path, then I’ll go every year, every day, forever.”

Going the Distance for Infertility Coverage – Reflections on Advocacy Day from Brooke

Posted on March 3, 2016 by admin

Today, Brooke Kingston shares why she travels 2000 miles from home to Washington, D.C. for Advocacy Day each year. Thanks, Brooke, for sharing your story!

Elizabeth

Brooke after sharing a portion of her story with ART of Infertility during our mini interview sessions before Advocacy Day, 2015.

Two years ago this May, I boarded a plane in Phoenix, Arizona destined for Dulles International Airport in Virginia, a place I’d never been. I picked up my rental car and drove to a home in Sterling, where I would be staying for the next week. I was about to meet someone I’d been online friends with for 3 years, but had never met face to face. Our plans were to get pedicures, eat good food, and spend a day in Washington, D.C. talking to members of Congress.

You’re thinking I’m crazy, right? Maybe a little.

When I think back to the leap of faith I took flying across the country, meeting (and planning to stay with) someone I’d never met and committing to walk the halls of the Capitol, I’m still a bit surprised with myself. I’m a homebody. I hate public speaking. Why would I do something like this? To explain that, I need to back up a little more.

Five years ago this summer, my husband and I were diagnosed with joint fertility issues. We were given a 2% chance of ever conceiving on our own. Having agreed ahead of time that we wouldn’t do IVF, we spent the next year coming to the decision that we would choose a childfree lifestyle as our resolution to infertility. It was the hardest choice we’ll ever make as a married couple, but we made it together and committed ourselves to each other and began to heal.

Part of my healing process is creating. I took up new crafts and converted what would have been the nursery into an office and craft room. I learned to knit and returned to painting, something I’d enjoyed in high school. I baked and decorated cookies and cakes. I dabbled in photography and sewing. My Pinterest boards grew exponentially. When our first nephew was born in the summer of 2014, I learned to quilt and made 7 quilts in as many months, gifting them with love to friends and family. I poured myself in creating to fill the void.

The fifth quilt Brooke created.

The other part of my healing process is taking action. Infertility left me feeling helpless, and then angry at that feeling of powerlessness. To face that anger, as well as to find community and support, I became involved with RESOLVE: The National Infertility Association. I started as a support group attendee shortly after our diagnosis and eventually became a group leader. I became involved in fundraising through the Arizona Walk of Hope, and eventually became the chair of the event. Later, I would become an Ambassador and assume the responsibility of being a positive face of RESOLVE in the community.

Brooke with fellow Advocacy Day attendees at the welcome reception in 2015.

In the midst of this volunteer work, I heard about Advocacy Day. In 2013, I remember posting on Facebook that I would be there in 2014. I didn’t know what all was involved, but that was my goal, and I would not fail. Those were my words: “I will not fail.” I spent the next year saving for airfare. A friend who I’d met through infertility message boards and become close with – thanks to our spectacularly matched wit and diagnoses – offered her home as my place to stay and agreed to join me at the Capitol. I was beyond excited and nervous, but on May 7^th, 2014, the day of my first Advocacy Day, I achieved the goal I’d made over a year earlier.

Brooke at Senator McCain’s office during Advocacy Day 2014.

It’s hard to describe the exact feeling of being at Advocacy Day. It’s awe-inspiring: from meeting the staff of RESOLVE, to hearing the empowering speeches of the event chairs at the morning training, to being in the Capitol building amidst the hustle and bustle of staffers and trams and security points. It’s intimidating sitting in front of a congressional staffer (most of whom were younger than me – you kind of want to ask if their parents know where they are), telling them you’re there because you’re infertile and you want their boss to support legislation that will make life better for people like you. It can be difficult to remember all the statements you carefully rehearsed and the facts about the bills you memorized when you’re nervous and your mouth feels dry and your palms are sweaty. Their political philosophy may be wildly different and you may feel like you’re talking to a wall.

But your voice is HEARD.

Whether my congressperson agrees with me or not, my voice was heard, and it was heard on behalf of 7.3 million Americans who weren’t there in that room that day. That’s an incredible sense of accomplishment. Even if they don’t agree to co-sponsor a bill, when we tell them that we’re there with a group of over 150 people from all over the country, that makes an impact. That tells them that we are a force, and that we matter. That’s the incredible feeling that drives me to attend Advocacy Day, to set aside my fear of public speaking for the greater good of my community. This May will be my third consecutive year attending, and I have no plans to quit.

Brooke and her online turned in-real-life friend getting pedicures before Advocacy Day 2015.

As for the friend I stayed with that first year, I’m doing that again, too. We’ve become the best of friends, and this is something we’re committed to doing together, along with the growing number of advocates we meet each year. Advocacy isn’t only about the message we deliver directly to congress. It’s about our community and how we foster it and make the environment better for those who can’t speak out. It’s about being with other people who understand the emotional complexity of the disease and using those emotions to drive action.

It’s about taking a leap of faith and believing that you can create a difference, start a conversation, and make things better for others.

Please consider joining Brooke at Advocacy Day in Washington, D.C. on May 11 this year. You can learn about how to get involved at resolve.org.

Myth – One round of IVF is all it takes to “beat” infertility.

Posted on February 29, 2016 by admin

I was very reluctant to try IVF. Three and a half years into trying to conceive I had endured 5 rounds of Clomid and timed intercourse, 4 IUI hybrid cycles, a diagnostic laparoscopy, and six months of weekly therapy appointments to sort out how I felt about the prospect of using IVF to try to build my family. I had spent months doing research about the procedure, along with even more extensive research about adoption. After much consideration, my husband and I figured that IVF would be the cheapest, fastest, easiest path to parenthood, even though it isn’t any of those things. Assuming it worked.

One in eight couples in America have received a diagnosis of the disease of infertility. Like most Americans needing IVF, our health insurance wouldn’t cover the treatment. We’d have to pay out of pocket. Not only that, the emotional investment can be extremely expensive. We decided that, for us, the best plan would be to try one round of IVF, transfer any resulting embryos, and move on to other options.

I remember when I told my mother-in-law we had decided to give it a try. I was in the dollar aisle of a grocery store talking to her on my cell phone. “That’s good,” she replied. “We know IVF works.” However, while I appreciated her confidence and hoped that it WOULD work for us, I’d done the research and had insight that she didn’t have. Although IVF would give us the best odds we’d ever had of achieving a pregnancy, they were still against us. IVF working was definitely not a sure thing.

Crib with Medication Boxes by Elizabeth Walker. Mixed media with custom crib by Morgan Shores Woodworking.

As described in this December article from The New York Times, a study out of the University of Bristol and the University of Glasgow in the United Kingdom found that “nearly two-thirds of women undergoing I.V.F. will have a child by the sixth attempt, suggesting that persistence can pay off.” The out of pocket costs for those cycles? As explained in this article about the same study, published by the Los Angeles Times, “a rough calculation (assuming two attempts at embryo transfer per cycle) would cost up to $132,000”.

These are the remnants of approximately $10,000 worth of medications, needles and syringes I used while undergoing one IVF and two subsequent Frozen Embryo Transfers. What could have resulted in my child, or children, instead resulted in a pile of boxes, bottles and sharps containers that I find hard to discard because they help represent my treatment journey.

THIS is why it’s so important that we advocate for legislation that will help those with infertility build their families. Maria and I will be at Advocacy Day in Washington, D.C. on May 11th, fighting for this cause and we invite you to join us! It’s an amazing, empowering experience, and a place where incredible friendships are made. In fact, Maria and I met at Advocacy Day in 2014.

If you want to learn more, check out this link from RESOLVE: The National Infertility Association. Or feel free to contact us to chat about it at info@artofinfertility.org. If you can’t make the trip, check out this link to learn more about the federal legislation and for easy ways to contact your Senators and Members of Congress to show your support. Another easy way to make a difference is sharing messages about Advocacy Day on social media. You could share this video, for example. Together, we can raise awareness, busting the myth that one IVF treatment is all it takes, and working to improve the treatment coverage that will help those with infertility build their families.

Elizabeth

#IFadvocacy

Risa Levine – An Advocacy Success Story

Posted on February 23, 2016 by admin

This week, we’re sharing the story of infertility advocate, Risa Levine. Risa’s story is a great example of the work that can be done and the progress that can be made, when you’re willing to stand up and fight for a cause. We hope that it will inspire you, as it has us, and that you might decide to join us at Advocacy Day on May 11th in Washington, D.C.

Elizabeth

Risa’s Levine’s husband proposed to her with the words, “I want you as my wife, I want you as the mother of my children.” They married shortly after and, with Risa living in New York City and her husband in Washington, D.C., they had a commuter marriage for the first year. They both wanted children but Risa stayed on the pill, knowing that trying to conceive wouldn’t bode well for what was already a challenging relationship.

Eventually, Risa’s husband joined her in New York City and a few months into trying to conceive, she made an appointment with a reproductive endocrinologist. Her doctor was confident that a few IUIs was all she would need. Unfortunately, that wasn’t the case. IVF cycle after IVF cycle ensued. “I did my injections at the U.S. Open in the bathroom, I did them in the middle of a Springsteen concert concert, I did my trigger shot with a client in the car. I just pulled down my pants and just popped it in my butt. You name it, I did it everywhere,” Risa recalls.

On the first morning of the 2004 Democratic National Convention, Risa, who was involved in John Kerry’s campaign for presidency, had her blood drawn for the beta results of her first IUI before driving to Boston for the convention. “I got the phone call just as I crossed the Massachusetts border. I heard the magic words, ‘Congratulations, you’re pregnant!’”

Elated, Risa threw back the top of her convertible and blasted Bruce Springsteen for the rest of the trip. Sadly, her repeat beta two days later revealed her numbers were going down instead of up. She was losing the pregnancy. Just wanting to be at home, she left the convention before Kerry and Edwards gave their speeches.

Early on in treatment, Risa started advocating for infertility rights on her own. “I had a lifetime max on my insurance of $10,000. I can’t speak for the rest of the country, but in New York that lasted about 15 minutes. I mean, a hysterosalpingogram and then three consults and you’re dead,” she explains.

Risa went to Washington, D.C. prepared with homemade folders and information packets on infertility. She’d set up a meeting with Anthony Weiner, who had previously introduced the Family Building Act, legislation to mandate infertility coverage on a federal basis. It hadn’t gotten very far and Weiner wasn’t planning on introducing it again. “I said you’ve got to introduce it again. I was aggressive and pretty vocal,” Risa recalls. With her urging, Weiner reintroduced the legislation six months later. “As far as I’m concerned, Risa states, “Anthony Weiner is an infertility hero and I will maintain that to this day.”

Weiner’s office alerted RESOLVE: The National Infertility Association, that Risa was on Capitol Hill lobbying for their issues. RESOLVE’s president, Barb Collura, called Risa and asked her to join their advocacy efforts. So, Risa chaired her first Advocacy Day and continued working with RESOLVE while doing everything in her power to try to get pregnant. She tried acupuncture, Mayan abdominal massages, went to a physical therapist to manipulate her uterus. She traveled to Israel with her family and visited every rabbinic tomb in northern Israel, traveling by armored bus to Bethlehem and, wearing a red bracelet, prayed at the tomb of Rachel, who had also suffered from infertility. She even drank crushed red rubies because there’s a connection between rubies and fertility in the Talmud. She had more pregnancies but none of them lasted. It was a difficult time, made even more challenging with Risa’s husband struggling with depression and alcoholism. “My husband continued with the alcohol binges in and out of my cycles so I was either dealing with him in the hospital or me losing a pregnancy or both. It was just an up and down nightmare of both happening at the same time.”

Back in the U.S., Risa worked with then Senator Hillary Clinton’s office on infertility. “We went through every issue and they were extremely patient, very inquisitive, and they wanted to understand absolutely everything,” she recalls. While Clinton’s office didn’t think it was the right time to introduce the Family Building Act in the Senate, they promised to help. “I didn’t know what form that was going to take but I also know how Clinton operated and her methodology is that if she couldn’t do it legislatively, she always found another way.”

A few months later, RESOLVE received a phone call from the Centers for Disease Control (CDC) after Clinton had called them asking what they were doing about infertility. As a result, the CDC drafted a white paper, establishing a need to study infertility. That paper became the National Public Health Action Plan for the Detection, Prevention, and Management of Infertility. “When the CDC declares something a disease that requires study, it becomes a public health issue and that’s an enormous platform for our advocacy,” explains Risa.

In November of 2007, Risa was mid way through what would turn out to be her last frozen embryo cycle when her husband came home saying he thought there was going to be trouble at work and that she had to either cancel the cycle or he was divorcing her. “It was out of the blue and that was really super traumatic,” she recalls. “He canceled the cycle, then left shortly thereafter for in-patient rehab. I had a friend’s wedding and I couldn’t face it and I went to Iowa instead for Hillary because that’s what I do. That’s how I deal with things. I campaigned. It became about getting Hillary elected” Risa says, fighting back tears.

A couple of weeks passed and things at home seemed like they would be okay until her husband told her he had rented an apartment and would be moving out the following week. Risa expected that their divorce would be amicable but that wasn’t the case. Instead, it took the next two years. The main thing they fought about was the four embryos they still had in storage at Cornell. “My then father in law was adamant that I was not going to have those and he told his lawyer, who told my lawyer, that there was no amount of money that he wasn’t willing to spend to make sure that I didn’t have them.”

Knowing that she couldn’t afford to fight her father in law, Risa made the decision to donate the embryos to Cornell for research, believing that was the only way to make sense of losing them. She hoped that Cornell would be able to use the embryos for something meaningful, whether it was stem cell research, infertility research, or whatever else they chose to use them for. Risa recalls that she had to force herself to sign the consent to dispose of the embryos and that that’s when she broke down. “I’ll never see my children. I lost my kids. The hopes and dreams I had; celebrating their bar mitzvahs and college graduations and first days of school and all of that. There is no getting over that. There’s living with it but there’s no getting over it.”

Risa spent her life’s savings and then some on her treatment, “I don’t have a baby and I’m divorced. So, outcome wise. It’s not an effective use of funds, time, body, money, life in any way. By the time my divorce was final in 2010 I was 48 years old and I was broke and broken.”

Risa continues as an infertility advocate because she hopes that she can make sense of what happened to her by helping other people. She’s frustrated when she sees those in the infertility community build their families and then not turn around and try to help those who are still fighting to build theirs by writing a $10 check to RESOLVE once a year, writing a letter to their legislators, or showing up on Capitol Hill during Advocacy Day.

Risa hopes that through her advocacy work, eventually, nobody will have to go through what she went through. Her next fight will be at the first New York Advocacy Day, Tuesday April 12^th in Albany for coverage of IVF and legalized compensated surrogacy and she will be in D.C. again on May 11^th, lobbying for family building legislation. “I fight so that people can have success,” she says. “I want them to have success.”

2015 Year in Review

Posted on January 26, 2016 by admin

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

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

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

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

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

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

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

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

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

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

Infertility Objects by Lauree Schloss.

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

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

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

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

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

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

-Elizabeth

Water, the President, and Infertility

Posted on January 21, 2016 by admin

You’ve probably heard of the water crisis in Flint, MI. In case you haven’t, here’s the gist of it. While the city of Flint was under emergency management by order of Governor Rick Snyder in 2014, a decision was made to discontinue sourcing the city’s water from the city of Detroit.

As a cost saving measure, Flint’s water supply would instead come from the Flint River. The river water was so corrosive that it broke down the city’s lead pipes, leaching toxic levels into the Flint residents’ water. Lead poisoning in children can cause developmental delays, vomiting, hearing loss, and more. In adults, it can cause memory loss, high blood pressure, reduced sperm count, miscarriage, the list goes on. In addition to lead poisoning, an outbreak of Legionnaire’s Disease, which is possibly the result of the contaminated water supply, has killed 10 people. This is all completely horrific.

In October, Flint’s water supply was switched back and is once again sourced from Detroit. However, the damage to the pipes has been done and the water is still unsafe. It wasn’t until January 5th though, that Governor Snyder declared a State of Emergency and on January 16th, President Obama declared the situation in Flint a federal state of emergency. Obama was visiting Detroit yesterday and spoke about this disaster.

Nearly seven years into my experience with infertility, it’s rare that I have those moments that anyone with an infertility diagnosis knows well. They come out of nowhere. The hit by a truck, breath knocked out of you, heart breaking into a hundred pieces moments when someone asks you if you have children, you see a young child reach for his father’s hand, or a pregnant woman lovingly rubs her belly. I’ve come a long way in dealing with the emotions that come along with this disease. However, listening to coverage of President Obama’s speech on my local NPR station, Michigan Radio, while sitting in traffic during my commute last night, I nearly burst into tears. The reporter quoted the president and then followed up with audio from his speech, reflecting on the crisis in Flint.

“I’m very proud of what I’ve done as president, but the only job that’s more important to me is the job of father. And, I know that if I was a parent up there, I would be beside myself that my kids’ health could be at risk. That’s why over the weekend, I declared a federal emergency in Flint to send more resources on top of the assistance that we’ve already put on the ground.”

Obama went on to say that he’s designated a federal coordinator to make sure the people in Flint get what they need from their country, that he’s met with Flint’s Mayor, Karen Weaver, and told her that he’s going to have her back, and all of the people of Flint’s back, as they work their way through this terrible tragedy.

My heart broke when I heard those words. My heart is racing now, after listening to Obama’s speech again to transcribe his sentiments. The President says he’s proudest of his role as a parent, a role that millions of Americans long for, yet are unable to achieve, because they have the disease of infertility. The federal government has the city of Flint’s back, as it absolutely should, yet there is no federal mandate for health coverage for the diagnosis or treatment of infertility.

Most Americans don’t have infertility coverage and many have to pay completely out of pocket for their health expenses due to this disease, a disease that is recognized by the Centers for Disease Control and Prevention (CDC) as a public health concern. The federal government doesn’t even have the backs of veterans who are infertile as a direct result of injuries sustained in the line of duty. There is currently a Veterans Administration ban on coverage for in vitro fertilization, a procedure that could bring the dream of parenthood to thousands of veterans of war who can’t become mothers and fathers without it. Parenthood. The role which their commander in chief values above all.

The people of Flint are worried about their health, scared of what their futures might hold, or might not hold, as a result of the public health crisis of contaminated drinking water. People are outraged so they’re raising their voices and they’re being heard.

This is why I raise awareness through infertility art exhibits, art and writing workshops, and conference presentations with ART of Infertility. This is why I lobby on Capitol Hill each year on Advocacy Day for legislation that, if put into effect, will help those with the disease of infertility build their families through treatment or adoption.

Maria and me on Advocacy Day 2015.

My infertility diagnosis affects my health and well being and alters the possibilities for my future. It makes me outraged that my loved ones and I don’t have access to the care we need to treat our disease. So, I write my members of congress, meet with them on Capitol Hill, align myself with members of the infertility community so we can support each other. I shed light on the trials of infertility through portraits and interviews of those dealing with the disease and curate exhibits of artwork created by them so the public, our insurers, and legislators can better understand why it’s important that we gain the health coverage we need.

Like the president, I’m proud of the work I have done. However, my job won’t be finished until every person who wants to be a mother, or wants to be a father, has access to the resources they need to achieve their dream.

-Elizabeth

Advocacy Day is on May 11 this year. Please join me in Washington, D.C! Click here for more info.

My Infertility Wardrobe – Reflections from Elizabeth

Posted on September 10, 2015 by admin

My mother once told me that she was so excited when she was pregnant with me, in part, because it meant she got to buy new clothes. Her budget for clothing was tight but a changing body meant she’d have no choice but to expand her wardrobe. My relationship with clothing and fertility has been a little more complicated.

I knew, long before I started trying to conceive, or received my diagnosis of Luteal Phase Defect, Endometriosis, and Diminished Ovarian Reserve, that when I got pregnant, I was going to show off my growing belly. No flowing tops with empire-waists for me! I was going to wear form fitting dresses, showing off every curve.

Once I went off birth control, I was reluctant to buy new clothes. It was only a matter of time before I wouldn’t be able to fit into them, right? I needed to save my money for trips to Motherhood Maternity and shopping A Pea in the Pod, and the maternity line of stores like GAP online.

Months turned to years and my clothes were getting tattered and faded. It was a stand off of sorts. I refused to give in and buy something new. Eventually, just after beginning a treatment course of inter-uterine inseminations with a hybrid of oral and injectable hormones, I needed a new winter coat.

My mother-in-law, Beverly, and I took a trip to TJ Maxx on a Saturday afternoon. I picked out two. One was Calvin Klein. Long, black, full of down, with faux fur framing my face on the detachable hood. The other, an Anne Klein of bright red wool. Beverly, an excellent shopping partner because of her excitability over a fantastic find, gushed about how cute it was and asked, “Oh! Don’t you hope you don’t get pregnant right away so you can wear it a little while?”

I didn’t care. The coat would fit after my pregnancy, or it wouldn’t, but at least I’d have a baby in my arms.

In the red coat, surrounded by children on a hay ride on our friends’ family farm.

Around that time, I decided to readjust my perspective and started using clothes as my consolation prize for not being pregnant each month. With the arrival of each new cycle, the sure sign that treatment had once again been unsuccessful and the prospect of having to buy maternity clothes was delayed for another month, I would head off to the Limited, or scour the racks at Marshall’s after appointments with the reproductive endocrinologist. I bought sweaters, camisoles, tops, but never bottoms, still holding on to the possibility that it wouldn’t be long before I was pregnant and I would have difficulty zipping and buttoning them.

My dresser drawers started overflowing and I had no choice but to start moving clothes into the dresser in the guest room that was supposed to become a nursery.

At Advocacy Day in 2014 wearing clothes purchased specifically for the occasion.

In March of 2013, we moved on to IVF. I had originally hoped to do it in February, just before 35^th birthday. I liked the idea of using 34 year-old eggs to create my embryos. Everyone knows things go downhill after 35, right? Unfortunately, since I now live in the world of infertility, I know that things can go downhill at any age.

Our IVF cycle resulted in three, grade 5AA blastocysts. They were high quality, hatched, and ready to implant and become my children. They were beautiful. We transferred two in May and waited to find out if they’d implanted meaning that I was finally, after four years of dealing with infertility, pregnant.

On the night before my beta, after we’d had dinner and I’d taken the dog for a walk, I tested. I seriously wasn’t expecting anything. The words, “It’s negative” were already coming out of my mouth when I realize it wasn’t. Positive. The line wasn’t very dark but it was there. My husband and I were all smiles and I made some comment about being his pregnant wife. Still, we were cautiously optimistic. We knew the blood test the next day would give us a better indication of what to expect.

The next morning, I saw a rainbow on my way to have my blood drawn. That had to be a good sign. The nurse called with my numbers a bit later. At 30, they weren’t where I wanted to be but I was indeed pregnant. Suddenly, I didn’t hate the pregnant women I passed in the hall at work. I was one of them. It was exciting but also a complete identity crisis. I was fully immersed in the infertility world at that point and the thought of switching gears and becoming a parent were daunting. Still, I smiled when I thought of raising my child alongside my best friend’s daughter who would be just a bit older. Summers at the lake, sleepovers. After years of being left behind by friends as they moved into parenthood, I’d finally be moving forward and joining them.

On the day of beta number two, my mom and I were shopping in Metro Detroit. I needed some summer clothes and took care to choose items that, as my mother-in-law had said about the red coat, I’d be able to wear a little while. At Nordstrom, I fell in love with a light-weight tweed skirt that, unfortunately for me, a newly pregnant woman, fit perfectly. There was no give, meaning it wouldn’t fit long enough to make it to the “yes” hook in my fitting room.

I paid for my items, we had some lunch, and made our way to an antique store. It was in the parking lot there that I got the news. My beta had gone down. The pregnancy was not viable. I emailed my husband the message, “No more shots.”

I thought I could hold it together but I couldn’t, we hit the highway to head back to the hotel. All I could think was, “I should have bought the skirt”, like doing so would have guaranteed that my pregnancy would have continued. For a moment I panicked and my mom and I considered turning around and going back to Nordstrom. We didn’t.

With my husband on our “IVF didn’t work so we’re taking a vacation” trip. I bought the hat at the resort gift shop after forgetting mine at home.

After my early miscarriage, that skirt haunted me. I looked for it on repeat trips to the mall and it wasn’t there. Months passed and my husband, Beverly, and I were visiting my nieces in Minnesota for their birthdays. We’d been at the Mall of America for hours with a trip to the aquarium, amusement park, the movie theater, and more. The girls were anxious to get back to the hotel to play with their new birthday toys but I wanted to try to take advantage of Minnesota’s tax-free clothing. I said good bye and I’ll see you soon as the rest of my family boarded the elevator to find the shuttle back to our room. I didn’t have much time, but I headed into Nordstrom Rack.

There it was. The skirt. I needed some closure. I took it to the fitting room, this skirt that I hadn’t been able to get out of my mind since the day of my miscarriage. The skirt that I passed up because I was pregnant, then wasn’t. My heart was racing as I put it on and zipped it up. I looked at myself in the mirror and was surprised to see that it wasn’t as fantastic as I had remembered. Relief rushed over me.

Since then, we unsuccessfully transferred our last embryo. We’ve moved on to trying to regroup. To find ourselves after more than half a decade of the turmoil that comes along with an infertility diagnosis. In addition to regular therapy, I’ve indulged in a little too much retail therapy. My recent splurge (a great deal at Nordstrom Rack, yet still not cheap), a Burberry dress. Not because it’s Burberry but because the fabric feels amazing and it’s in a style that I’ve always wanted, but I’ve never before been able to find in proportions that fit me right. It’s hanging in my closet, with the tags still on. I go back and forth between thinking I should return it and imagining myself wearing it to present about the ART of Infertility at an upcoming medical humanities conference.

The Burberry dress. It’s nowhere near that short on me!

Click here to vote on whether I should return or keep the dress.

I’m not yet sure if my journey will take me to a life living child free or to parenthood. I imagine both scenarios and there’s a wardrobe that goes along with each. In one, there’s shopping without the worry of my newly purchased pants suddenly not fitting, neatly folding clothes and then doing my best to cram them into already over-filled suitcases for more travel with ART of IF, carefully chosen outfits for business meetings, a variety of shoes, belts, and jewelry for accessorizing.

In the other, there are also the shoulders of my sweaters soaked with baby drool, the hem of my skirt being tugged by the tiny hand of a son or daughter, urging my attention to his or her level. There’s me in the stands at a ball game in the rain, wearing a wind resistant parka and, eventually, a trip to a boutique to purchase a mother-of-the-bride, or groom, dress.

I don’t imagine that one wardrobe is better than the other. I believe I can be happy wearing either one. But will one make me happier? Feel more fulfilled? More at peace? I’m not sure yet. So, I’ll take this time to work on re-weaving the fabric of my life that’s been worn thin over the past six and a half years, hoping that I’ll eventually know how to cut it up and stitch it back together into something beautiful and new.

I’m NOT an Artist: A Video Blog from Maria

Posted on September 1, 2015 by admin

Maria and I attended the Examined Life Conference at the University of Iowa Carver College of Medicine in April of this year and were invited to have some work from ART of IF on display there. It was an inspiring few days and, on the drive home to Michigan, we had the idea to put together some art packs that we could hand out at Advocacy Day. We figured if people had all the supplies they needed to create a piece around their experience with infertility, it would make it easy for them. We loaded envelopes with a mini canvas, paint, mod lodge, feathers, beads, anatomical drawings and more.

However, while everyone was very excited to receive their packs, it’s been a few months and we haven’t seen too many creations in our mailbox. We understand the process of creating art can be daunting, even when you have supplies on hand. It’s something that Maria has been struggling with and wanted to share her thoughts about here. Hopefully her words will resonate with those of you who still have art packs sitting around and explain how, even if you’re not feeling very artsy, the process of creating can still be beneficial in your journey. Click on the link below the picture to view the video that Maria has created.

Elizabeth

I’m NOT an Artist

s/m/othering

Posted on August 19, 2015 by admin

We’re featuring artwork from the project’s permanent collection in this week’s blog post. Marissa McClure has created this piece, s/m/othering, in which she has removed the babies, children, and reproductive organs from well known pieces of art. She then invites others to choose an image that speaks to them and share their reaction to the image by pasting it, along with their narrative, in a book.

We’ve been traveling with the book and it’s been in Iowa City, Los Angeles, Washington, D.C., and Northern California with us so far. We’re sharing some images and stories from the piece this post and you can look for us, and the book, at our upcoming events in New Jersey, Michigan, California, Illinois, and Arizona where we’ll invite you to share your own story through Marissa’s piece, mini interviews and photo sessions, and some other fun interactive projects we have planned.

You can read Marissa’s complete paper on s/m/othering at this link. Thank you, Marissa, for sharing your art with us!

ART of IF

The official blog of the traveling art exhibit and oral history project, ART of Infertility.

Tag Archives: Advocacy Day

Myth: You’re Alone in Your Infertility Journey

Advocacy Day Reflections from Jennifer

Going the Distance for Infertility Coverage – Reflections on Advocacy Day from Brooke

Myth – One round of IVF is all it takes to “beat” infertility.

Risa Levine – An Advocacy Success Story

2015 Year in Review

Water, the President, and Infertility

My Infertility Wardrobe – Reflections from Elizabeth

I’m NOT an Artist: A Video Blog from Maria

s/m/othering