Infertility Symposium Features Perspectives of Reproductive Loss

A little over six months ago, we were asked by fertility acupuncturist, Steven Mavros, if we’d be interested in doing an exhibit in Philadelphia. Now, we’re under two weeks away from opening night. We’re thrilled with how the infertility community in Philadelphia has come together to make the exhibit, “Cradling Creativity”, and its accompanying programming possible. Today, we share our press release for the event. We hope you’ll join us as we make infertility visible in Philly. 

Contact: Elizabeth Walker                                FOR IMMEDIATE RELEASE
Phone: 517.262.36
Email: elizabeth@artofinfertility.org

Cradling Creativity: The ART of Infertility in Philadelphia Announces Calendar of Events

Infertility Symposium Features Perspectives of Reproductive Loss

Ann Arbor, Mich. – Oct. 23, 2017 – The ART of Infertility, a national arts organization, announces a month-long symposium, Cradling Creativity: The ART of Infertility in Philadelphia at three locations to raise awareness about infertility through art and storytelling during November. The symposium includes a visual art exhibit, Cradling Creativity, a yoga creative writing workshop, a screening of a new documentary film One More Shot, performances of the play, Almost Pregnant by Lisa Grunberger and an academic round table at Temple University. These events will take place at Old City Jewish Arts Center, the Healing Arts Center of Philadelphia, and at Temple University at specified times from Nov. 3 – Dec. 1. Most events are free to the public.

Over 266,000 people in Pennsylvania are living with infertility. In Philadelphia, fertility acupuncturist, Steven Mavros, co-founder of the Healing Arts Center of Philadelphia, works to help many diagnosed with the disease. “I’ve walked along this path with my patients a thousand times, both in my office and in reproductive medicine clinics. It can be such a lonely, silent struggle and this artwork can bridge the gap between medicine and culture and create that dialogue that’s been missing both among my patients and with their friends and family.”

In her research Dr. Alice Domar, Executive Director of the Domar Center for Mind/Body Health, has found the stress of infertility is equal to that of the stress of dealing with cancer. However, those with infertility often suffer in silence.

“Infertility is a lonely, isolating experience. The ART of Infertility is communal and social – and for this reason it is extremely healing.  The ART of Infertility allows infertile individuals to transform their complex emotions into something that can be seen and shared – and this is always a radical thing, to translate suffering into something beautiful,” said Lisa Grunberger, an infertile patient, artist, and Temple University professor featured throughout the symposium.

Cradling Creativity: The Art of Infertility in Philadelphia Calendar.

The public is invited to attend all events.

The ART of Infertility Exhibit: Nov. 3 – Nov. 28 – The exhibit will premiere during First Friday from 5:00 pm to 9:00 pm. Old City Jewish Arts Center, 6:00 – 9:00 pm.  November 4 – Opening reception with The ART of Infertility’s Elizabeth Walker and Maria Novotny, artists, and sponsors. Tickets available at http://bit.ly/ARTofIFCCReception.

The Yoga of Writing: A Heart-Opening Workshop: Nov. 5 – Healing Arts Center of Philadelphia, 12:00 pm – 2:00 pm. Tickets available at http://bit.ly/yogawriting

Theatrical Performances: Almost Pregnant: Nov. 11, 15, and 25 –  In Lisa Grunberger’s play Almost Pregnant you will meet Becca, a 40 something woman who has to creatively adapt to her condition of infertility.  Joined by her alter egos, Estrogen and Lucky, two live puppets, who serve as the chorus, wise fools, and comic relief, the play is full of stories, tragic and funny, about motherhood, fate, the transmission of identity, nature vs. nurture and God.   Almost Pregnant gives you an unexpurgated insider’s view of the art and science of, what’s been called, “sex without reproduction and reproduction without sex.” The play will run on November 11, 15, and 25th from 8:00 – 10:00 pm at the Old City Jewish Arts Center. Each performance will be followed by a Q&A with the playwright, director, and cast. Almost Pregnant is written by Lisa Grunberger, directed by Hamutal Posklinsky, and stars Claire Golden Drake, Kellie Cooper, and Marc C. Johnson. Tickets available at http://bit.ly/AlmostPregnant17

Film Screening: One More Shot: Nov. 18 – Private screening and Skype Q&A session of the film, One More Shot, from 8:00 pm – 11:00 pm at Old City Jewish Arts Center. Created by Noah Moskin and Maya Grobel Moskin, One More Shot follows the struggles they encountered when trying to have a baby. The Moskins explain, “Though we are both in our early 30’s and in good health, we have had to begin a quest to build our family through alternative means and medical intervention as we try to find our own personal answer to the age-old question ‘Where do babies come from?” Tickets available at http://bit.ly/OneMoreShotPhilly. The film will also be available on online outlets on November 4th and pre-order for iTunes begins October 25.

Barren Conceptions: December 1 – Barren Conceptions: Pondering Intersections of Religion, Medicine & IF, Temple University 10:00 am – 12:00 pm. What role ought religion and medicine — the clergy and doctors in particular – play in helping women make informed decisions about having babies? How are future OB-GYNs being trained in medical schools today to become more knowledgeable about infertility and to ask women difficult questions about family planning? Please join us for this informal reflection of these and other critical questions. This event is free and open to the public.  Tickets are available at http://bit.ly/BarrenConceptions

Sponsors for the Symposium are the Healing Arts Center of Philadelphia, RMA of Philadelphia, Main Line Fertility, Society Hill Reproductive Medicine, Embryo Options, Reproductive Associates of Delaware, Abington Reproductive, and the film One More Shot. Community Partners of the exhibit are Baby Quest Foundation, Yesh Tikva, Hasidah, Fertility for Colored Girls, and the Waiting for Babies Podcast.

 About The ART of Infertility

The ART of Infertility is a national arts organization. Founded in 2014, we curate innovative and emotionally provoking art exhibits to portray the realities, pains and joys of living with IF. We also design engaging curriculums to host art and writing workshops. We plan educational, outreach events. We advocate for infertility rights. Most of all, we provide support for those living in the shadows of infertility. Through art, we break the silence around reproductive grief and push back against common misconceptions. We invite you to join us in our fight to make infertility visible. To learn more, visit http://www.artofinfertility.org/.

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Living with an Invisible Illness

by Elizabeth Walker

Throbbing, wrenching, searing, exhausting, sickening, miserable, and dreadful. Those are the words I chose from the McGill Pain Questionnaire to describe the pain I felt during a flare of my fibromyalgia last week.

I’ve dealt with chronic ailments my entire life. When I was in elementary school, it was migraines. As a teenager, it was irritable bowel syndrome and what I now know was endometriosis. In my early twenties, I developed chemical sensitivity and was covered in itchy red welts over my entire body for two years straight.

Then, in my mid-twenties, the chronic, widespread pain set in. Pain. All over my body. All day. Every day.  Along with the pain was sheer exhaustion. No matter how much sleep I got, it was never enough and I would seriously melt down over the thought of the energy it would take to do simple tasks like filling the dog’s dish or responding to an email.

After nearly eight years of the pain and exhaustion, visits to specialists, a battery of tests, and several stints in physical therapy, I was finally diagnosed with Fibromyalgia. Fibromyalgia (FM) is a central sensitization syndrome. Basically, my central nervous system is on high alert at all times and pain, and other sensory signals, are amplified.

It turns out, that all of those other problems I’d had earlier in my life fall under central sensitization syndromes as well. Migraines, irritable bowel syndrome, chemical sensitivity, endometriosis. They all fall under the same umbrella. As do temporomandibular disorders (otherwise known as TMJ or TMD) which I have also since been diagnosed with. Additionally, interstitial cystitis, restless leg syndrome, and even post-traumatic stress disorder are categorized this way. Often, as in my case, patients present with different central sensitization syndromes over the course of a lifetime.

Most of these syndromes are invisible, but the implications on those diagnosed can be debilitating. My FM has caused me pain nearly every day of my life for the past 15 years. When I get what I call a flare, I’m in excruciating pain, shaky and nauseated, for at least two and a half days at a time. Flares can last up to a week and can occur as frequently as twice in a week.  I’m in complete misery. Yet, people often tell me when I’m in a flare, that even though I report that I feel dreadful, I look great.

I never really believed this until recently. A co-worker emailed me a photo that he took of me at a work event. The day it was taken, I was dealing with maxed-out pain. The absolute worst it gets for me. It was so bad that, not to freak anyone out, I was actually thinking about how I could put myself out of my misery in a way that would have the least amount of impact on my family. How would I do it? Where? When, exactly? However, looking at the photo, you would never know it. I’m smiling while I work, carrying my big heavy camera, walking around in strappy high heels.

A photo of me on one of the most miserable pain days of my life.

My chronic pain and fatigue have had a huge impact on my infertility journey. When I was finally diagnosed with FM, I was already trying to conceive. Because of this, I wasn’t able to try any of the medications used to treat FM. None of them were appropriate for someone who was pregnant, or trying to get pregnant. I couldn’t take the medications, but I couldn’t get pregnant either. Then, I started taking other medications to help me get pregnant and they made my pain worse. Yet, I still couldn’t achieve a pregnancy.

It was a vicious cycle and I felt like I was running a marathon that would never end. So, I took a break to try meds for a while. Cymbalta. My miracle drug. I don’t know how managed before it. While I still have pain nearly every day, the intensity of my day to day pain is decreased while I’m taking this medication. Life is much more manageable.

When quite a bit of time had passed and it was time to get back to fertility treatments, I had to go off my meds. For me, weaning off Cymbalta is done gradually over the course of a couple of months and the withdrawal symptoms can be unpleasant, dangerous even. Brain “zaps” (which feel like electric shocks shooting through your brain), vertigo, anxiety, nausea, tremors, visual disturbances. Not only is this scary, I was terrified of how intensely my pain would return after the Cymbalta was out of my system. However, I couldn’t move forward with treatment for infertility without discontinuing the meds I take for pain, so it was the only way to go.

No more Cymbalta, just more infertility medications. Medications delivered orally, by suppository, by injection. No pregnancy, just more physical and emotional pain. A variety of invisible ailments. Invisible disabilities.

I’ve been thinking about this a lot over the past few weeks. A year ago I changed my diet. I now eat a Paleo diet and have had some allergy testing so I avoid the foods I found out I’m allergic to as well. No sugar. No dairy. No grains. No eggs, pineapple, paprika, asparagus, crab, trout, and more. The results of the change in diet have been life changing. It’s meant that I’ve actually had some pain free days over the past year. Something I hadn’t experienced in well over a decade. However, the past couple of months have been hard. I’ve continued to eat a strict diet, but I’ve had more frequent flares. It scares me. I wonder if it means that I’ll soon go back to living in fear like I did not long ago. Back to week long flares several times within a month.

The other reason I’ve been thinking about it is because I’ve joined the Diversity, Equity, and Inclusion committee in my department at the University of Michigan. I’ve been working on populating the committee’s website and have been gathering information from the members of our team. Which areas, pertaining to diversity, should I list as their areas of interest or expertise? Which topics should people feel comfortable approaching them about for mentorship or assistance?

I’m guessing that the majority of the people on the committee with me, let alone that work in my 1000+ person department, have no idea that, despite looking healthy and “great”, I’ve become well versed in the human resources policies for medical leave, and my rights as a person with a disability, due to my fibromyalgia, my infertility, and the two medical leaves I had to take within a year of each other as a result. They would never guess that the issues I can help my fellow co-workers with are disabilities, medical leave, grief, miscarriage, and more.

Through it all, I’ve had an amazing support system. Friends who understand when I need to cancel plans because my pain is unbearable. Family members who make sure the holiday meals include foods I can eat. My husband, who let’s me sleep the entire day if I need to, and plays me funny cat videos to help take my mind off things for a little while.

I also have an outlet through my art. Somehow, creating is healing. Whether it’s the calm I feel brushing acrylic paint across a canvas, or the meditative act of weaving with wire, I feel steady. I feel like I’m more than my pain. More than my disability.

I invite you to join me, and The ART of Infertility, at SEA-ART-HEAL: The ART of Infertility in Seattle. You’ll have an opportunity to see the healing affect that art has had on me, and on others in the infertility community, through a collection of art and poetry on display at the Art/Not Terminal Gallery at the Seattle Center the entire month of April. Our exhibit opening reception is April 1, from 6 – 9 pm.

This exhibit, and the accompanying film screening of the movie, One More Shot (with a Q&A with the filmmakers), and a blackout poetry art workshop, are funded in part by the Seattle Office of Arts and Culture and sponsored by Pacific NW Fertility, Seattle Reproductive Medicine, Embryo Options, Acupuncture Northwest and Associates, and SIFF Film Center. Our media sponsors are ParentMap and The Stranger, and our community partner is Baby Quest Foundation. You can get all the info you need about the exhibit events, including registration, and how to buy a ticket for One More Shot, or reserve your space for the workshop, at http://bit.ly/SeaArtHeal (If you are interested in spreading the word about this event to your networks, please email me at info@artofinfertility.org and I will send you a tool kit :)!)

If you’re not in Seattle, don’t worry. We’ll have a lot of artwork and stories headed your way via our social media throughout April. We also have events coming up in Boston, Washington, D.C., and Los Angeles. You can check out our complete schedule on our website. http://www.artofinfertility.org

Wishing you health and peace on your journey,

Elizabeth

Art Journaling to Cope with Infertility

I was very fortunate to wake up this morning in our nation’s capitol, where I will be advocating for legislation to help those with infertility. Sara Elliot, our guest blogger this week, was hoping to make the trip this year and was unable, but wanted to share her story with us via the ART of IF blog. Thank you, Sara for sharing your story with us!

Elizabeth

Art Journaling to Cope with Infertility

Many in the infertility community will be making their way to DC this week for Resolve’s Advocacy Day on Capitol Hill.

I can’t be there to advocate this year in person, but I still I wanted to help raise awareness about the 1 out of 8 couples who month-after-month, year-after-year are trying to build their family by any route available to them.

imageLet’s start with this. I never thought that I’d be a person who would “do” IVF. It’s taken a long time to come to terms with the loss of control over my body and my reproduction. With a diagnosis of PCOS and subclinical hypothyroidism, I am now both infertile – meaning we tried to get pregnant for over a year without assistance – and have experienced recurrent pregnancy loss. The combination is so difficult.

Around the time I first went to on OB/GYN to get testing, I found out that it took my grandparents 7 years to conceive my mother, so there is likely a genetic component to what I am going through. I remember my grandma saying, “Our children came along later” but I didn’t understand infertility might be the cause until I was faced with it myself.

For reasons we’re still trying to figure out with our doctor, we’ve conceived four times through assisted reproductive technology – 2 IUIS and 2 IVF cycles – and lost all 4 pregnancies. One was ectopic. One had a heartbeat we got to hear twice.

While going through this recent IVF cycle and loss, I turned to art journaling to process the emotions of this heart wrenching experience. I made a point to draw just a little bit every day, even if all I could muster was a few words in black pen. I’d often fill in the color on better days.

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The art journal is a record of what kept me going, including song lyrics and reminders to take care of myself.

At the start of the New Year, I pick a new word to focus on. This year the word I chose was “Become.” This song by Iron & Wine got stuck in my head for weeks, so “Become the rising sun” has become a phrase I focus on a lot.

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When we got an unexpected positive pregnancy test in February, I tried to remember to be happy in the moment. I was very anxious, given our history of loss. During this cycle, I saw the trailer for the documentary One More Shot by Noah Moskin and Maya Grobel Moskin. When Maya said, “In this moment, I am happy” I sobbed realizing how hard and necessary it is to grab a moment of happiness amidst all the bad news.

Fear of loss is a very typical response for women who have been through so much to get pregnant. Many infertile women talk quietly about the post-traumatic stress they experience. In the end, the only choice is to surrender, continue to persevere, and to figure out how to rebuild a life that includes more than just a few moments of happiness.

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In 2010, my husband and I moved back to our home state of Michigan to be near family as we tried to have children. As the years of trying to conceive and maintain a pregnancy unfolded, an added heartbreak was that if we’d stayed in Massachusetts, our IVF health care costs would have been covered by insurance because state law in Massachusetts mandates coverage for IVF. Michigan law does not. Federal law does not. Money that we’d intended for a retirement account or a child’s college fund was instead spent on medical bills that were uncovered by our health insurance.

And let’s be clear – female and male sterilization is covered by our insurance plan, yet the most effective treatment for infertility, IVF, is not covered. As far as I can tell, the only logic for this policy is cost savings for the insurance companies. No working reproductive systems means no babies which means no hospital births and no well-baby visits to pay for on family insurance plans.

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Despite all of our bad luck, we are lucky that we have some savings to spend on our health care needs. Many couples do not. And frankly, no one should have to spend five figures out of pocket to treat a diagnosed medical condition.

Only laws can change this situation.

Thank you to the women and men who are in DC advocating on our behalf this week.