Top 5 Ways to Advocate (While Not at Advocacy Day)

This is the first year, The ART of Infertility will not be at Advocacy Day (which is today)! However, despite our absence, it does not mean our advocacy efforts are mute. Here are 5 easy ways to advocate for infertility and family-building rights.

Maria and Elizabeth at Advocacy Day in 2016 at the Capital.

  1. Call Your Congressional Representatives about National Issues Impacting Family-Building. Here is a list that RESOLVE: The National Infertility Association will be tracking.  You can also utilize their easy 3-step instructional with a script to assist you.
  2. Get To Know Your Local/State Bills That Impact Family-Building. Here is a list for you to consult.
  3. Get to Know How Your Employer Supports Alternative Family-Building. You can request insurance coverage and improve access to care from your employer by downloading and filling out this letter. 
  4. Ask Your OB/GYN, Reproductive Endocrinologist, and Urologist to Get Involved on Issues 1-3. Share with your care provider more information on all the issues that impact family-build!
  5. Use Your Voice and Tell Your Story to Your Reps, Family, and Friends. Remember, you are not alone! 1 in 8 couples struggle with building their family around the U.S. If you are interested in sharing your story, you can do that with us here.

Join us in pledging to take these 5 actions throughout this coming year, until we meet again at Advocacy Day 2019!

Experiencing Infertility as a Woman of Color: An Asian American Perspective

When I started working with The ART of Infertility organization, I knew very little about infertility and even less about how it affected women of color. As a black woman I wanted to change this, confront my own ignorance and attempt to represent the voice of marginalized women within a marginalized topic. But I wasn’t exactly sure how. When I read stories from occasional anthologies or on my Facebook newsfeed (no doubt due to algorithms hard at work in my Google searches about infertility), I repeatedly found that the people described were white women or white couples who were pursuing medical treatment options.

ART of Infertility intern, Juliette.

While I strongly agree with Audre Lorde in her claim that “there is no hierarchy of oppression,” I firmly believe that representation will always matter. Infertility affects people of color and our storytelling should create a space to expose and discuss these stories. Where was the discussion and aid for people who looked like me? For people who couldn’t afford medical treatment options or had no community to fall back on for support? Where were the women of color in the narrative of infertility, and what were their stories?

My questions began to get answered the day I got a call from Elizabeth, who wanted to see if I would be interested in conducting an interview with the amazing Annie Kuo, an Asian American woman who resides in Seattle, Washington. I jumped at the opportunity.

Annie is a mother to a six-and-a-half-year-old daughter, an activist that trains RESOLVE advocates to rally for family-building legislation on Capitol Hill, and a great source of information on the different options for women dealing with infertility. She’s hosted a RESOLVE support group for three years and done research on third party reproduction, adoption, foster care, and egg freezing.  

The following is a brief excerpt from a conversation I had with Annie focusing on how race affected her journey in the world of infertility. – Juliette


Juliette: As a woman of color, have you been able to get the quality of care you deserve? Have you ever felt like you’ve been denied certain things because of your ethnic identity?

Annie:  I haven’t personally noticed any difference in the level of care. But I am American who is the child of immigrants. I speak fluent English and live in a very progressive major city on the West Coast. I do know, however, that cultural factors impact people of color in terms of infertility awareness and the right time to consult medical personnel. For example, Asian Americans are less likely to seek medical advice within two years [of not conceiving] which wastes precious time. Due to the denial of their situation or distrust of a medical professional, they often will consult a friend or family member instead. If my Asian American sisters who are suffering silently can feel a closer identification with me when I speak about infertility, that’s worth speaking up for. One reason I’ve been so willing to tell my story is because I feel like it helps remove some of this social shame around something that affects a lot of people.

Annie Kuo, an ambassador and family-building advocate with RESOLVE: The National Infertility Association.

I’ve heard women of color in support groups talk about fertility stereotypes that weigh upon them, the expectation they face if they don’t have their desired family size, the shame that they feel. There’s a cultural stereotype of Latino and African Americans that they’re very fertile people, so there’s an extra stigma (and lack of community understanding) within certain communities of color about infertility. A lot of what we’re doing is a movement; it’s a movement to remove some of that shame and stigma.  

When we’re out there on Advocacy Day to help Americans struggling to build their family, that’s fighting for everybody. For the people who have money to afford IVF, or at least take out loans to do it, but also for the people with infertility across the socioeconomic spectrum who pursue family-building options through means that cost less money—like foster care.

According to the National Institutes of Health, infertility affects 1 in 6 people. It’s an equal opportunity disease. It doesn’t care what race, color, or class someone is. It strikes people at random. The lower income folks, which let’s face it, do include people of color, struggle to build their families too. They can’t always afford IVF… a lot of times they can’t. These are the ones we fight for on family-building legislation around foster care, because often they will turn to foster care to expand their families. I want to get adoption tax credit refundability on Capitol Hill so people of color who are fostering to adopt have the option of adopting more than one child into their home, many of whom are siblings. There is a highly disproportionate number of foster children who have siblings.

Annie, with other Washington state advocates, at the 2016 Advocacy Day hosted by RESOLVE: The National Infertility Association.

In regards to third party reproduction, I definitely think there is an issue in finding the right match for you. It’s limited by who is in the donor pool. A couple years ago, our support group took a tour of the local sperm bank. There was an Indian American woman in our group and at the time, only one Indian sperm donor available. She wanted an Indian donor and that was her only choice at that bank.  In the Asian American community there are fewer women who are willing to donate their eggs, so there are fewer choices. Women even get recruited from Asian countries to donate their eggs because intended parents want to find the right match. When there are limited options, recruiting donors outside of North America expands the pool selection. Asian egg donors are paid higher in some places as well.

J: Do you think this lack of diversity within donor pool is because so many people don’t know the real scale of infertility in this country? Is it possibly a money factor?  Why aren’t there more in your opinion?

A: I think there’s a combination of factors, including lack of awareness about ways to help and that there is a need in general that struggles to be met. Part of it is stigma about giving up one’s own genetic material for pay. It’s almost looked down upon, like you sold out, gave up your gametes for money. It can be perceived as shameful to use it on the side of the patient and shameful to give it on the side of the donor. In India using a gamete donor is not mentioned. Often, donor recipients don’t even tell their relatives. Honestly, I think some of the gamete providers, I’m talking sperm and egg banks, they’re also not proactively going after donors of color. They’re not prioritizing this… I don’t know, maybe it’s some tall WASP’y guy making the decisions and they don’t have the frame of reference to get that this is an issue.

J: Do you think that art has a healing capability and a place in this conversation about infertility? Can it be used to represent a marginalized community and bring them into this conversation?

A: I think art is a wonderful way for expression and public consumption. A lot of people can see through creative forms like film, artifacts, and visual art what they are feeling inside. Art and emotion, I feel, are cosmically linked. There’s something spiritual about it. Something that can express what other forms don’t have the power to. I would encourage more people of color to get involved with having a creative outlet for what they are experiencing or suffering, whether that is journaling or creating a vision board or taking brush to canvas. Art, film, and writing are often healing ways to create when we may be limited in our creation of life, speaking reproductively. I think it’s a wonderful outlet to have and I think more people should consider pursuing art as an outlet. Not only to raise awareness and contribute to an exhibit, but to heal.  

Annie, with Maria and Elizabeth at The ART of Infertility Exhibit Opening in Seattle in April 2017.

To read more about Annie’s story, she shares her perspective on living with infertility as an Asian American in the following articles:


My conversation with Annie gave me a glimpse at a different side of infertility, one where the women not only battle their bodies but must also combat communal stigma, lack of donor options, and lack of representation. I think my biggest take away, one that I find myself coming to fairly often in my research on infertility, is that these things need to be talked about with more frequency. Annie’s insight, candor, and willingness to share her story to help other women of color dealing with IF so they don’t have to face what they’re going through alone is not only inspiring, it’s necessary. And it needs to happen more.   

 

Next week, we will feature Madge’s story and experience of navigating infertility as a black woman. Look for it soon!

I went to Capitol Hill (for Advocacy Day) and all I got was this lousy best friend

#BarrenBesties, Brooke and Kathy, share stories of their friendship in today’s blog post. Thank you Brooke and Kathy!

Kathy, left, and Brooke, right

B: Kathy and I met on the message boards of thebump.com. We really started chatting when she was undergoing radiation therapy for her thyroid cancer. We have similar diagnoses in our marriages (minus her cancer), so we bonded really easily. She’s also freaking hilarious.

K: One of my first memories of my friendship with Brooke was flipping through a catalog (like the old school paper kind) and seeing this print of a quote- it was colorful and bright and immediately made me think of her. “In the midst of winter, I found, within me, an invincible summer.”- Albert Camus. I ordered it and awkwardly packaged it up and shipped it off to Arizona because she neeeeeeded it. I remember my husband saying you’re sending this to someone you met on the internet?? Yes. Yes I am.

B: One of our funniest moments was Kathy’s birthday gift being spoiled. At our second Advocacy Day, RESOLVE invited us to be Ambassadors and it included a full day training. Because we’re hilarious, we started calling each other Ambaaaaaaaassador in fancy British voices and it evolved into Badassador. And so for her birthday, I ordered her a custom necklace with our made up word on it. The Etsy seller posted a photo of it on social media and Kathy sent me a screen shot like “OMG LOOK.” and I’m like… “uhhh, Happy Birthday!”

K: The best things about our friendship are everything. Literally everything. I can say anything without fear of judgement. I can vent. I can complain. She relates to me in a way that is so rare to find in a friend. And the jokes. SO MANY JOKES.

B: Two years ago, one of our fellow advocates (we’ll call her Becky to protect her privacy) couldn’t make it to Advocacy Day, so we had a giant photo made of her face so she could be there “with” us. And then she ended up being able to come. We posted a selfie with it and she was like, “is that my face?” And then we died laughing.

K: I picked Brooke up at the airport with our flat friend riding shotgun and one of the greatest moments that year was the Flat and Real versions of Becky meeting each other. Flat Becky even got a photo op with RESOLVE CEO Barb Collura.

B: We have a million inside jokes. We can make each other laugh with a single word. It’s amazing to have someone who knows me so well.

We see each other – ideally – twice a year. We do Advocacy Day and then try to do a long weekend later in the year. Being from Arizona, I like to go to DC and spend time in cold weather. Two years ago, Kathy came to Arizona for my 35th birthday. Thirty-five was the age that I kind of gave myself to be the limit for freaking out about choosing childfree and pursuing treatment, so it felt like a big birthday. I wanted her with me, and she came! It was amazing. We went on a Selfie Trail because obviously.

K: We tried so hard to meet up this year- planned this great trip to Memphis and two days before- I was diagnosed with the flu. So instead of going to Graceland, she sent me a life size cardboard Elvis who now lives in my dining room. He stares out the window to freak out the neighbors. We have Amazon Primed things to each other that we never knew we always needed. I love her so much that I’ll spend 4 hours in the observation tower of the Air and Space Museum while she tracks the planes that land with an app on her phone. She gets all giddy like the little elementary school kids. We go to terrible spas and eat way too much Mediterranean food. And every single time we’re in an airport together it’s just a big ugly cry mess.

B: I heard about Advocacy Day in 2013 and it was too late to get it together to go, but we started talking about going in 2014. At some point, she invited me to stay with her, so I did what any rational person would do and booked a trip to spend an entire week in the home of a complete stranger. I didn’t even ask if she intended to turn me into a skin suit until I’d landed at Dulles.

Brooke and Kathy at Advocacy Day, 2017

K: When Brooke told me she wanted to go to Advocacy Day that very first year- It never occurred to me that we might not get along and it would be awkward having her in my house. My son, Sam, was just a few months old when she came that year. I remember being worried about if she would be uncomfortable with SO much baby everywhere. But that was all gone when she sat holding him at dinner that night. Now she is a part of his life, which I love. She sends him such thoughtful gifts. Now my 4 year old Sam asks when she is coming back and if he can take her to the trampoline park. And he always requests to see pictures of her dogs. He thinks it’s hilarious that they eat carrots as treats.

B: I never even knew she was worried about me having sad feelings about Sam. Quite honestly, it can be difficult to have a relationship with someone who was successful with infertility treatments while we’ve chosen to be childfree after infertility. I remember so vividly all the emotions of Kathy’s three IVF cycles and was so elated when she found out that the third had been successful. I love Sam deeply and it’s just never been an issue. It’s been difficult with other friends, but never with Sam.

Advocating together has been amazing. We’re both passionate about advocating for family building and ensuring that others have the options to pursue the family they want. The Capitol has become Our Place and we give Capitol themed gifts sometimes.

K: That first year when we met- it was like meeting your person and just knowing that you were going to be together forever. We spent that week laughing until we cried and I was so happy that she came to stay with me. A big part of that was experiencing our first trip to Advocacy Day together. There’s nothing quite like that feeling of empowerment that comes from the first trip to Capitol Hill. It has become just another thing that bonds us together and something we both share a passion for.

B: Well said, Biff. Love you. Mean it.

 

 

Persistence in the Age of Resistance

Today, May 18, is Infertility Advocacy Day. This year, RESOLVE: The National Infertility Association, is teaming up with the American Society for Reproductive Medicine. Nearly 250 constituents have gathered from around the country to fight for improvements for those living with infertility. Long-time advocate, Risa Levine, is among them and shares this message with us as today’s guest blogger.

To my fellow advocates,

We are at a strange place in our history for women of our generation.  After the dormancy of the post Viet Nam war era, we are finally seeing a reawakening of political consciousness, a resurgence of social activism in an era when most public engagement has been reserved for Super Bowl ticker tape parades. We are seeing people take to the streets outside government offices, we are seeing hundreds of thousands of women marching all over the country. And we are seeing crumbs of response. Bill O’Reilly is history. That’s something.

Most of us don’t remember the sixties, a time of anti war protests, suspicion of government, overthrowing of a well established social order. A time when “burn your bra” was not just a symbol or catchphrase, but a revolutionary, engaged act of actual resistance to social norms that far eclipsed the message attempted to be sent by wearing knitted pink pussy caps.

But for the most part, the resistance agenda has been reactionary, one of anger, fiery Roman candles in the night. An affirmative legislative agenda has not quite yet been identified and the methodology has been murky. This era of #resistance was triggered by one man, and the mistreatment of one woman. But there are myriad inequities that have been brewing for a long time. Occupy Wall Street reflected those divisions but failed to achieve meaningful change beyond sloganeering. Similarly, the signs at all of the recent marches range from reproductive rights to immigration to LGBT rights to guns – while all require respect for people, the only proposed solution, dump trump, doesn’t address the underlying problems.   “Resistance” alone, is not solutions-based.

Risa wth Gloria Steinem, her first role model, getting out the vote in PA

Anger – when properly directed – is good. Anger can be motivating. Anger can spur people to turn off the TV and take to the streets. But that “fight or flight” adrenaline response to anger without proper outlets, a cogent agenda and a clear end goal, can become unhealthy. And unrequited. The problem with resistance, like the mantra of the 60s, “never trust anyone over the age of 30,” is that it will, by definition, fail, as the aging process is scientific fact.

While our efforts to address the fundamental unfairness that is experienced by infertility patients should be – and because of some of our advocates’ efforts sometimes is – an issue for #resistance, it is more an exercise in Persistence. A diagnosis of infertility IS a pre-existing condition that could bar one from obtaining health insurance if the House legislation were to pass the Senate, but even the most liberal outlets neglect to include infertility on their comprehensive list of diseases that would bar infertility patients from coverage: we have much work to do to educate even our natural allies. Let’s not forget that.

However, when we hit Capitol Hill, we aren’t coming only from a place of adrenaline-producing anger. Anger at the unfairness, sure. But we aren’t acting merely in opposition to the current zeitgeist. We aren’t seeking confrontation. And we aren’t simply fighting a misogynist agenda. We are promoting education, family values, long term protection and science.  We are seeking to right a wrong practiced by both parties for decades. We are in it for the long game.  We are fighting for families. For traditional values reinforced by modern scientific advances. Love and Science, hand in hand. We must be above partisanship. We are above the divisions in this country. We personify Persistence.

Risa with Hillary Clinton in New York City: Discussing Matters of State.

Whatever your personal feelings about where we are at this very, very historical juncture, on May 18, stay focused on the positive. We are advocating FOR something. For more rights for ourselves and for our families. For future families.  For our military. For the safety and integrity of our bodies. We come in peace – we simply need to know that our health concerns are being addressed. We do and we will exercise our voting rights if we aren’t heard, but we come as constituents with problems that Congress can address. Ask them for their support. But don’t leave without their understanding.

 

 

Love’s Conception – Third Party Reproduction

Tomiko Fraser Hines – Photo by Guy Viau

Learning you will need to turn to third party reproduction in order to have a chance at experiencing a pregnancy is a hard thing to wrap your head around. Tomiko Fraser Hines used the art of poetry to find healing.

We first learned of her poem, “Love’s Conception…For My Boys,”  during our National Infertility Awareness Week event in Los Angeles in 2015. Then, the next month, she recited it for us during an Advocacy Day mini interview in D.C. You can #listenup by playing the audio, or reading the poem below. Thank you, Tomiko, for sharing your story! We look forward to seeing you in Los Angeles when we are there for our Men’s Health Month event in June!

“I wrote this poem in November of 2012 when I was about seven months pregnant with the boys. I was in the midst of all of the concerns that come with the way they were conceived, which was via an anonymous egg donor. And, basically, that they would not have (to my knowledge, I’m not a scientist) but to my knowledge they wouldn’t have any of my genetics. So, I had a lot of concerns about that and I needed to find a way to come to peace with it. I write, and words just kind of come through me. I sat down and I wrote this poem for them, but also for me, and it’s called, Love’s conception… For My Boys and it goes a somethin’ like this…”

You won’t have my eyes, but you will benefit from my vision.
You won’t have my mouth, but I will teach you how to use your voice.
You won’t have my ears, but your listening will be finely tuned.
You won’t have my DNA, but my blood will forever nourish you.
You were not my conception, but I will birth greatness in you.
We won’t reflect each other on a physical level, yet we will mirror each other in wondrous ways.
I will guide you.
I will shape you.
I will encourage you.
I will free you.
I will love you.
Hello! My name is Tomiko, and I am your mother.

Gearing Up for Advocacy Day – Andrena’s Story

Thanks so much to all of you who applied for our The ART of Infertility Advocacy Day grant! We wish we had the funds to help everyone who applied. The staff at RESOLVE: The National Infertility Association, was kind to choose the recipient and chose Andrena King who will be representing the state of South Carolina! In today’s post, we hear a bit about Andrena’s infertility journey and what she’s been doing to advocate for change. Thanks, Andrena, for sharing your story!
-Elizabeth

My husband Chris and I were married October 2013 and we decided to try to conceive two years ago. After actively trying for a year we started the process of getting basic tests done to make sure everything was working fine. One of the initial tests showed that I had a blocked fallopian tube so I was immediately referred to a fertility doctor by my gynecologist. Everything was happening so fast that initially I felt numb. I held my tears in until I went back to work and had a major breakdown in my supervisor’s office. I was heartbroken and afraid. 

We had a terrible experience at our first consultation. It was like we were on an assembly line. We were rushed in and tossed to people we were meeting for the first time who seemed more concerned about signing us up for the next group of couples getting IVF. My husband and I were devastated and no one cared. So, we took matters into our own hands and started doing research. We started our search for other fertility specialists in the area and reached out to friends who had overcome infertility for guidance. I found the RESOLVE: The National Infertility Association website and was blown away by resources available there.

While reviewing our health plans, we realized that our benefits included the opportunity to receive a virtual second opinion online. We had our tests and charts reviewed by a fertility specialist. While he couldn’t confirm that my fallopian tube was actually blocked, he did rule out male factor infertility. We found another fertility doctor that was a great fit for us. Our new doctor was recommended by mutual friends. As we talked during our first appointment, we knew we were in the right hands by his compassion and his ability to explain options. He advised that the next step was to have a laparoscopy done to see what was actually going on.

During the surgery, it was discovered that one of my fallopian tubes was severely damaged and had to be removed. The damage was due to a previous surgery I had to have a cyst removed while I was in college. My left fallopian tube was blocked by a cyst so that was also removed.  We felt optimistic after gaining answers from the laparoscopy and decided to move forward by taking fertility medication and trying on our own for two months. The third month, we had our first IUI which wasn’t successful. Month four brought another unsuccessful IUI.

Based on what the doctors said, it was the perfect opportunity for us to conceive because everything was in place. We were very disappointed and decided that mentally, emotionally and physically we needed a break. We are currently taking a break from treatments and have become very involved in raising infertility awareness in our community.

While busy with treatments and doctor appointments, I recognize the limited access to resources and support in my city related to infertility. After seeing the guidelines needed to start a support group, my cousin and I decided to start a RESOLVE Peer Led Support Group in Columbia, SC. Our first meeting was held in August of 2016. The group is one of two in the entire state of South Carolina. When our journey started, Chris and I quickly realized that our insurance plans would not pay for any of our doctor bills or treatments. This set back and financial burden prompted us to advocate to change this injustice, not only for ourselves but for others in our state. After months of meeting with legislators, the S.10 Legislation was pre-filed in December of 2016. The bill requests that insurance companies cover the diagnosis and treatment of infertility procedures. The legislation has some exclusions but this is a big step in the right direction. The legislation is currently in subcommittee waiting to be discussed by the Senate and House. We have great support from our family, friends, co-workers and non-profit organization WREN (Women’s Rights Empowerment Network) advocating with us to get this legislation passed.

I applied for the Advocacy Day grant to bring awareness to the lack of insurance coverage, legislation and support in my state for families trying to conceive. This has to change. I’m looking forward to learning how to properly interact with legislators to advocate for others on their journey to parenthood as well as collaborating with others who as passionate as I am about making a difference in our states. I hope to gain new friendships, guidance and be empowered to continue to advocate for others.

Chris and I remain positive that we will one day become parents as we rely heavily on our faith in God, prayers and support from loved ones.

Apply for Grant to Join ART of Infertility at Advocacy Day

In May, we’re heading to Advocacy Day for our fourth year. We know that there are many in the infertility community who would also like to attend, but find it difficult when they are already paying out of pocket to try to build their families.

So, this year, we’re offering a grant to allow a first-time attendee from an under-represented state to make the trip to attend this event, hosted by RESOLVE: The National Infertility Association.

You can get all the details below. We hope that those of you eligible will apply, and that everyone will share the word with their online and in real life support groups, their clinics, families, and friends.

Details:

  • The grant will cover airfare and ground transportation, lodging, and a stipend for meals.
  • All eligible entries will be considered and staff from RESOLVE: The National Infertility Association will choose the awardee.
  • All information must be submitted by Tuesday, April 4th at 11:59pm EST and the grant recipient will be notified on, or before, April 12th.

Eligibility Requirements:

  • To be eligible, you must live in one of the following locations: Alabama, Arkansas, Georgia, Idaho, Indiana, Iowa, Kansas, Louisiana, Maine,  Mississippi, Montana, Nebraska, Nevada, New Hampshire, New Mexico, North Carolina, North Dakota, Oklahoma, Oregon, Rhode Island, South Carolina, South Dakota, Vermont, West Virginia, Wisconsin, Wyoming.
  • You must also be able to travel to Washington, D.C. on May 16th, 2017 and stay through the evening of May 18th, 2017.
  • Eligibility requires participation in all Advocacy Day activities, including physical assistance with a pop-up exhibit featuring Advocacy Day stories and artwork that will be curated by The ART of Infertility and on display during the welcome reception on Wednesday May 17th.

To Enter:

Please fill out the following form: http://bit.ly/ADGrant_2017

About The ART of Infertility:

In March 2014, the first exhibit “The ART of IF: Navigating the Journey of Infertility” debuted at the Ella Sharp Museum in Jackson, MI. Elizabeth Walker curated this exhibit which emerged from her own experiences with infertility. In an effort to make sense of her infertility diagnosis and surround herself with people who understood the difficulties of navigating infertility, she joined an infertility support group and realized the importance of sharing her journey with infertility. She also began creating artwork representing infertility and with others in her infertility support group collected artwork and stories for the Ella Sharp exhibit. Shortly after its exhibition, Maria Novotny met Elizabeth at Advocacy Day, an annual event hosted by RESOLVE: The National Infertility Association, which lobbies Congress on access to care and other issues important to the infertility community. Both being from the state of Michigan, Elizabeth and Maria spent the day lobbying MI congressional representatives.

Spending time together, we shared how infertility was shaping not just our personal lives but professional ones as well. Maria explained that she was studying “rhetorics of infertility” as part of her PhD at Michigan State University. Elizabeth described how she was trying to bring the exhibit to other cities and collect more stories and artwork from around the country. We both shared a desire to become more involved in the infertility community and less concerned with becoming pregnant ourselves. We shared how we were finding our own healing in creative outlets and connecting with other infertile women and men. After the advocacy event, Maria sent Elizabeth some short non-fiction vignettes detailing the everyday struggles of being young, recently married and diagnosed with infertility. In turn, Elizabeth shared mixed media art pieces representing the pain, frustration and isolation of experiencing failed fertility treatments. Through this sharing, we both noted how central creativity was to our healing and, so, we decided to collaborate. Through this collaboration, we developed “The ART of Infertility” the national art, oral history and portraiture traveling exhibit.

Why Advocacy Day:

Advocacy Day holds a special place for The ART of Infertility. It is where Elizabeth and Maria first met and where the project really began to grow. Advocacy Day serves as a reminder of why we travel the world curating exhibits and raising infertility awareness. As two infertile women, however, we understand that affording Advocacy Day can be a challenge. This grant is aimed to provide support for an infertile person who would like to attend but could otherwise not afford to come. It is our hope to inspire another infertile person by granting them the opportunity to join hundreds of passionate women and men fighting for infertility justice.

Click here to learn more about Advocacy Day.

Questions can be directed to: info@artofinfertilty.org

 

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 Truth Behind Combat Related Infertility

As we celebrate #MensHealthMonth, we share a story from Crystal who describes the day her family’s life changed forever. Her fiance, Tyler, was injured while serving with the US Army’s 173rd Airborne Brigade. She shares their inspiring story on how they have fought not just for better Veteran’s care but have fought for their own family.

We salute Tyler and Crystal who remind us that infertility does not discriminate. It can impact anyone – men, women, veteran or civilian.  

***

Tyler at National Mall

Tyler, pictured outside of the National Mall in Washington, D.C.

May 3, 2005 was a day that changed our lives forever. Tyler was serving with the US Army’s 173rd Airborne Brigade when his Company was called into the Arghandab River Valley to rescue their Battalion Scouts. After arriving in the valley, the Company’s Weapons Squad, where Tyler was serving as an Assistant Gunner, headed to a high point to provide support by fire. While on the hillside Tyler’s squad came under fire and within minutes Tyler was shot four times. The first bullet lodged in his spinal canal, which left him instantly paralyzed from the waist down and unable to move out of the line of fire. Tyler’s Squad Leader, SSG Matt Blaskowski and SPC Clover recognized the danger Tyler was in and despite continuous fire ran to Tyler’s aid to pull him to safety. Tyler was already paralyzed, but the second bullet was what threatened his life as it ripped through his left lung and lodged in his liver. Tyler was left fighting for his life, and without the intervention of others and a will to live he would not have survived.

Little did either of us know May 3, 2005 would set our paths to cross and ultimately lead to another big fight. Tyler and I met in 2013 when he decided it was time to move past his paralysis and return to the things he loved, sports and outdoor recreation. This is where I came in; I worked in adaptive sports for Veterans and together Tyler and I were able to rekindle his love for all that Colorado has to offer and ultimately fall in love with each other!

Shortly after Tyler and I started dating we began discussing a family and how that would be possible with his injury. This is where the biggest fight we have ever faced together began. Due to Tyler’s paralysis we quickly discovered that IVF was our only option to have a biological child of our own. Soon after, we discovered that due to a 1992 “ban” Congress put on the VA there was no coverage for this medical procedure. We were heart broken, devastated, disappointed, the list goes on, after discovering that Tyler’s wounds received in combat would present a $40,000 barrier to us fulfilling our dream of having a baby of our own and Tyler’s last step to fully reintegrating into civilian society.

Neither Tyler nor I were ready or willing to give up on this dream. He fought with everything he was to survive after May 3rd, despite all odds we found each other, were building a life together, and as a stronger team we would fight for this together. There have been so many “bad” days where anger and disappointment feel as they are taking us over in the journey to have a family, and at times complete disgust that our country, a country that you can’t walk down the street without seeing a yellow ribbon, “God Bless our Troops” sticker, or hearing “thank you for your service,” could let this man down so completely. To cope with the spinal cord injury is difficult enough, to fight for your life is enough to ask of Tyler and every other Service Member in his situation, to ask them to give up on the opportunity to pursue a family simply because politics gets in the way is absolutely unacceptable.

I have seen this man struggle through enough already; to get through life as a paraplegic is not an easy task, but he has NEVER ONCE complained about anything or regretted his service to our country until this. To ask him to give up on something he has wanted his whole life, to be called “Dad” simply because he answered the call to Duty, served honorably, and happened to be wounded in a way that prevents him from being able to pursue this dream without medical intervention is this country, this Congress, truly turning their backs on those men and women who have given so much of themselves already.

These reasons are why Tyler and I have chosen to not only find any way possible to pursue this medical treatment on our own, but to also stand against this gap in coverage and fight to both bring awareness to the issue and change policy to ensure this never happens again. The bad days are no longer consumed with anger and no where to place it, disgust and no way to overcome it, but instead we have taken this opportunity to advocate on behalf of Tyler and every other Veteran in his seat, to stand in front of Congress and give them a face to remember when they vote on the proposed legislation that would reverse this “ban.” It has become our mission to ensure Congress no longer vote on statistics related to this issue, but instead vote on faces, on families, on those men and women who they sent to war with a promise to provide health care to those who came back wounded, ill, or injured.

Tyler and Crystal training for the Ride the Rockies tour.

Tyler and Crystal training for the Ride the Rockies tour.

Tyler has done an amazing job at living life from a wheelchair, we have built an amazing life together full of support and a promising future, but this wheelchair, this bullet in his back, that should not be an excuse for Congress to deny him or anyone else in his position what Congress cherishes most themselves. When we were in DC at Advocacy Day 2016, there was a majority of Congressmen and Congresswomen that had family pictures strewn throughout their offices. This became our platform and will continue to be our motivation for change. We have a wall full of medals Tyler earned in combat, we have a wall full of pictures with us and our dogs, but what we are missing is what Congress already has, what war did not take away from them, we are missing Baby Wilson’s birthday.

If you would like to follow-along with our journey to Baby Wilson, IVF Advocacy for Veterans, please see our blog at http://www.pushmeeveryday.com

News Round Up: All About Veterans

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CSPAN announcing HR 2577 passed.

This week’s News Round Up is all about veterans because a historic vote just took place and passed! The Mil-Con Bill, now named HR 2577, passed yesterday in the full United States Senate by a vote of 89 to 8, with Senators Corker, Crapo, Flake, Lankford, Lee, Paul, Risch, and Sessions voting against it and Senators Boxer, Cruz, and Sanders not voting. Confirmed: it *included* the Amendment providing funding for IVF for Veterans. It will now move forward to a conference committee to reconcile the bill and then go back to both the House and Senate for a vote.

Kuddos to all of you who called Congress this past week encouraging your local Senators to support this bill. Citizen advocacy does work!

Today, we localize the importance of this bill by sharing a recent news story of Michelle Wager, a MI veteran who has been facing her own infertility journey.

michelle wager

Michelle Wager, a MI veteran facing infertility.

“A roadside bomb blew off one of Wager’s legs, badly damaged the other and broke her back. Doctors say she coded three times. Her recovery was long and painful. Military health benefits covered the cost to get Wager back on her feet, but there was another problem. Her menstrual cycles had completely stopped, doctors say her injuries threw her body into early menopause. She was just 31 years old and her chances of having a child were slim to none.”

You can read more of Michelle’s story here.

We invite you to learn more about the challenge veterans face when pursuing family-building options and to contact your federal representatives asking them to co-sponsor S 469, the Women Veterans and Family Health Services Act. Find your representatives here.