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.

 

 

IVF and A New Beginning

Today’s guest post is from Paula Campos who we met at #asrm2016 in Utah last week. Paula’s own infertility journey led to creating the app, Naula. Thank you, Paula for sharing your story! 

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Paula Campos

When I was a kid I was certain that I was going to be a doctor. My Dad always told us
he wanted to go to medical school and he was always very meticulous. He cleaned our knee scabs, cuts and everything else that required a wound dressing change with perfection. His frustration became a momentary dream for me. When asked what I wanted to be when I grew up, I was quick to say that I wanted to be a doctor.

Last week I almost felt like one when I attended the American Society for Reproductive Medicine (ASRM) Scientific Congress & Expo in Salt Lake City, I spent three fantastic days learning about infertility, checking the latest and greatest technology on embryo transfers and attended some insightful panels on infertility advocacy and legislation changes, research and the emotional rollercoaster that patients experience while going through fertility treatments such as In Vitro Fertilization (IVF). I am not pursuing a new career in medicine, I was there because infertility is part of my story.

I am married to the man that I met when I was 10 years old. We were best friends before becoming life partners. We always talked about having kids, two maybe three! So we started working on that a few years after getting married. A year passed, then another year, then another year. I was having trouble figuring out when I was ovulating so I went to see my physician, she told me it was a good idea to check in with an specialist so that is what I did.

I went to a couple of different Reproductive Endocrinologists for a consultation and they all told me the same thing, I had low ovarian reserves. Their recommendation was to start IVF immediately. I was in denial for a while but time (and eggs) was running out. Picking a doctor was no easy task. I ultimately went with the one that gave me hope and comfort: Dr. Vicken Sahakian. On my second consultation I left the clinic with a print out calendar with my protocol, a lot of paperwork with instructions, and tons of questions in my head.

I went online and looked for videos to watch, specifically how-to videos and egg retrieval procedures. How to inject Follistim, Lupron, Menopur, Gonal-f! What is the egg retrieval like? How long does it take? I was stressed, overwhelmed and on a mission to find a mobile app to help me track all of my medication and appointments on a timely manner. To my surprise, I couldn’t find anything that was close to what I needed so that’s when the idea of creating something came to mind.

I could use my expertise and creativity to give women a useful tool and help make their journey less stressful. Experiencing the struggles first hand was the inspiration to create Naula. While going through the treatments I also cofounded The Glue, a full-service marketing agency specializing in creating meaningful and beautiful experiences. With Neille’s (my business partner’s) full support, encouragement, wisdom and endless patience, we designed, developed and launched Naula, the best fertility treatment mobile app in the market.

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Campos created Naula, an app for managing fertility treatment cycles.

Naula was created to help women just like me, going through Assisted Reproductive
Technology (ART) treatments, manage medications and appointments. Keeping
everything in one place was key. It includes the most common treatments IVF, IUI, Egg Freezing, Egg Donation and Surrogacy. We compiled the best instructional videos and added step-by-step instructions with custom illustrations one tap away from your fingerprints. Users get reminders and alerts on their phone no matter where they are.

The ability to instantly add medications and appointments to an easy to use calendar, provide a bird’s eye view of the entire protocol and privately share with loved ones was very important.

fertility-treatment-appHaving gone through IVF three times, we added a feature that allows users to duplicate a treatment which saves a lot of time. Most importantly, security and privacy was top priority, all of the data transfer and personal information is encrypted and protected.

Infertility is a heavy topic. Emotional support and empathy is not as available as anyone might expect. And, I think for most women and men not being in control is what makes this so hard. It took me about three years to be able to openly speak and write about this. I never imagined that I would be going to a reproductive conference, let alone make a product like Naula. It gave me a new perspective about getting pregnant,making a baby, having a family, adopting and also none of the above. My IVF treatments ended but my journey is not over yet. Creating Naula gave me a new beginning and I will get another chance to write how my story ends.

How I Spent My Summer Vacation

How I Spent My Summer Vacation
A post by Elizabeth

You haven’t heard much from us this summer. We’ve taken a bit of a break from our regular social media posts to work behind the scenes. It’s been very busy.

After working as a photographer for the University of Michigan’s Department of Pathology for just over 16 years, I accepted the new position of Communications Specialist early this summer. I’ll be spending less time on imaging and more time managing the content for the department’s website as well as Inside Pathology magazine, and our annual report.

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Dressed for the morgue.

Within minutes of accepting my new roll, my partner unexpectedly announced his retirement. They don’t plan to back fill my old position and haven’t yet filled his, so I’ve been trying to manage it all since June 24th. This has meant that I’m on call for autopsy service every morning and get little else done!

A job to cover autopsy photography has finally been posted and closes on Friday. I’m hopeful that we can get someone in to relieve me soon and I can spend more time on the new job that I’m excited to dive into.

I worked with a delightful high school student this summer to get our artwork and supplies organized at our storage unit. It took us some time but everything is so much easier to find now. It looks like it might not be much longer before we need a bigger space. We’re all paid up through March but this will be one of our upcoming needs for sponsorship.

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Artwork and supplies in an orderly fashion.

We’re hard at work on our 501(c)(3) paperwork. Our articles of incorporation have been filed and it won’t be long until we’re a full-fledged non-profit. We’ve started assembling our board and are excited about what our non-profit status will mean for the sustainability of the project.

My sisters, my mom, and I went to see Dolly Parton in concert in August. Seeing Dolly was on my mom’s bucket list and attending the show induced tears of happiness. Dolly is an amazing performer and I view her as a great child free role model. It was great to spend an evening with Dolly and some of the nearest and dearest ladies in my life.

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Waiting for Dolly to take the stage.

My nieces came to Michigan for their annual summer visit. This year they stayed with us for 3 weeks. It’s never long enough. There were play dates, night time glow parties at my parents’ pool, and we tried our hand at our first batches of French macarons.

Our first attempt at macarons. Not too bad!

Our first attempt at macarons. Not too bad!

I have to admit that the macarons totally intimidated me. I only agreed because my middle niece really wanted to try making them. It ended up being a great project that we all enjoyed doing together and I learned that I shouldn’t be afraid to try things that scare me. Well, at least recipes that scare me ;).

I took a trip to the REACH Art Studio in Lansing where we’ll be showing some work from the permanent collection during the Cultural Rhetorics Conference at Michigan State University at the end of this month. Maria, Robin Silbergleid, and I will also be presenting at the conference. I hope you’ll come see the exhibit on Friday September 30th from 6 – 8 pm. 

We’re teaming up with the University of Michigan Center for Reproductive Medicine for a cigar box art workshop on October 10. We’ve also been prepping for a wind chime art workshop with the Utah Infertility Resource Center and the talk we’ll be presenting at the American Society for Reproductive Medicine’s Scientific Congress in Salt Lake City on October 18. We have another exciting trip and exhibit coming up in November and we’ll be announcing the location once we have our travel finalized.

We'll have a variety of materials available to create wind chimes for pregnancy and infant loss remembrance day.

We’ll have a variety of materials available to create wind chimes for pregnancy and infant loss remembrance day.

This summer has brought some challenges for me in navigating my infertility. Mainly, how it’s affecting socializing with my fertile friends. I’m finding it hard to spend time with the families who have kids around the same age my twins would be had they survived. It’s made for some cancelled plans and afternoons in tears. Fortunately, my friends are willing to stick by while I try to figure out how to handle these situations.

Between this and the crazy work schedule, I’ve been utilizing all of my tools for self-care. Many days, on the way home from work in my vanpool, I color. I love the images in the Coloring Conception adult coloring book. Don’t forget that we’re going to be doing an online exhibit of images from the book this fall and you’re invited to participate. You can download the pages from a link in creator, Buffy Trupps’, blog post. Just scroll down past the video and enter your name and email address and the files will be mailed to you. Those who participate have the chance to win a Mindful Fertility Journal.

I recently finished coloring this page of Coloring Conceptions.

I recently finished coloring this page of Coloring Conceptions.

Finally, over the weekend, I took the first non-work vacation in, well, I can’t actually remember the last non-work trip I took. I met up with my friend Jo in Chicago. Our friendship is one of the many I have infertility to thank for. We spent time exploring the city, eating great food and getting inspired by exhibits at the Art Institute of Chicago.

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With Jo in the Windy City.

Maria and I are in the process of hiring social media interns so we can get back to bringing you some great content every day of the week.

We’re always looking for those interested in sharing their stories through our blog as guest posters, those who would like to do an oral history interview, and those who would like to share their artwork through our exhibits. We invite you to learn more at our website. Feel free to contact me via email at elizabeth@artofinfertility.org or tweet us @artofif.

Elizabeth

 

 

 

2015 Year in Review

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.

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.

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.

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.

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.

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