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

“A Map to Us” – Stephanie McGregor

Today’s guest blog post is from Stephanie McGregor, a Canadian teacher and artist. Read her story and how she is using her art to help her deal with infertility.

blogpost6 My name is Stephanie McGregor. I’m an artist/teacher and have been struggling with infertility for two and a half years now. Until several months ago, my husband I kept quiet with our struggles, until I did a blog post called “The Monkey in the Room”. You can follow this link if you’d like to read it:

http://www.stephaniemcgregor.ca/blog-montauk/2016/1/3/the-year-of-2016

I knew that I wanted to start a project that I could turn to whenever I feel sad about not yet having a baby.

I bought a very large, blank canvas and hung it up in the room that I hope will one day be a nursery. It sat, white and untouched for a while, until an intriguing thought began to unfold.

I could make a map!

blogpost1

A piece of Stephanie’s art work.

As  I started sketching out places that are important to me, a little story started forming and it speaks of all the places that our “lost” child can find us.

At first I began painting our little cedar bungalow and my childhood home (which is actually next door!) I added depth with colour of the trees and wildlife wandering across the canvas. Then, the memories started to come trickling in. Like the way my three sisters and I would run after my dad as he mowed the lawn and the pool parties we once had. My childhood dog still scouts around, a protective light glowing.  Our lost pink paddle boat chugs down the river, leading to the cottage where we spent every summer. The more I continue to work on this painting, the more saturated with memories my “map” will become.

As I’m painting, I also think of my mom and dad’s struggles. They tried for seven years to have children. Eventually, they had in vitro fertilization, which was successful and they had three five pound baby girls (including me). My younger sister came 15 months later, an unexpected, wonderful surprise!

A McGregor family portrait

A McGregor family portrait

 

 

 

 

 

 

 

 

I cannot express how wonderful my childhood was and this is what I focus on as I’m painting. All I want is the chance to have a family of my own to create new memories with. I plead with my future child, saying that here there are:

Adventures unnamed

Creatures to befriend

Discoveries undiscovered

And possibilities to pretend….

 If only he/she could find us!

Some days I am feeling so overwhelmed with emotion that I aimlessly wander over the canvas, dabbing paint with no direction. What am I doing this for?

I’m sure anyone going through infertility can relate to some of these feelings.

Other days I feel hot anger and will brush an orange red sunset across the canvas. What is wrong with me?

 A lot of times, as if in meditation, I spread translucent layers of blue to form soft waves. I can accept this path I’m on. Then again, once in a blue moon, I feel hideous green envy. Why her and not me? I allow myself to paint without worry of ruining this piece.

Other times, I focus my attention to one small part of the map and then revel in the feeling of creating something beautiful. This feeling anchors me.

blogpost3

Other days, I simply sink to floor, my worries weighing heavy and crowding my mind. It sometimes strikes me that this room is supposed to be a nursery, but it is filled with only paintings. I am hit again by fact that besides a paintbrush, my arms are empty.  The fact that I so badly want to make new memories with a family of my own and I don’t know when that will happen.  It’s been two and half years and how much longer do I have to go? Why does it feel so lonely? Does anyone really understand how I feel?

I am also struck by how this journey has changed me. I find that I’ve put myself at a distance from friends and family. I’m afraid to dream too big or wish too much.  Instead of bounding carefree down the road, I step cautiously, looking out for rain. I wonder where this road is going.

But then I glance up and I see what I am in the process of creating. This map is part of my story, one that I can share with my future child.  It really is beautiful. At the end of my story, I wrote to my little lost one:

I can’t map out a life for you that:

Leads you always the scenic route

Away from sadness and pain

I can’t promise you won’t have to walk

Through the dark forest even for a little while

 The very least I can do

Is make this Map to Us

And hope, wait, and dream

That it finds its way to you.

 So I stand up and keep on painting my map. I don’t know exactly where my road to becoming a mom is going yet, but I still have a lot of hope.

I have a few suggestions for anyone who is looking for a project to work on. Why not think of something big that will take a while for you to work on? You can plan out your idea and then whenever you feel like you just need to take your mind off of what you are going through, you can do a small part and not have to think about it very much.

I wish you well on your journey!

To read more about Stephanie’s story and to see more of her artwork, visit her website at; www.stephaniemcgregor.ca

 

 

Giving Tuesday as a Not Quite Non-Profit

We are working with our attorney to finish up the last of our final paperwork for filing as a non-profit. We are excited about what this will mean for the sustainability of The ART of Infertility (ART of IF) and the work we do to educate about the experience of infertility and provide a creative outlet and community of support for those living with it. For those of you new to ART of IF, or who need a refresher, here’s a link where you can learn more about our mission and our team.

A participant works on a memory box at an art workshop in Ann Arbor, MI.

A participant works on a memory box at an art workshop in Ann Arbor, MI.

Our articles of incorporation were filed in June. This means that, considering that our final paperwork is accepted and non-profit status is granted (and we have no reason to believe it won’t be), any donations will be tax-deductible retroactively to the date they were filed. Long story short, you give, it will be a future tax deduction.

However, we have really been struggling with asking a population who has already sacrificed so much, to give more. Many of you have to pay out-of-pocket to even get testing to receive an infertility diagnosis, let alone have an attempt to build your family through treatment or through adoption.

You scrimp and save, give up the large and small luxuries in life, max out credit cards, take out home equity loans, just to have a chance to have what comes so easily and virtually free to most, a child.

So, if you’ve passed the point in your fertility journey where every penny counts, or have access to insurance that keeps your out-of-pocket costs low, then yes, by all means, we could definitely use some cash!

img_4464

Our current storage space shortly after we moved in. It’s now filled to the brim and we need an upgrade!

Thanks to those of you who have generously shared your artwork and stories with us, we have an urgent need for a bigger storage space for our artwork and art workshop supplies for 2017. Ideally, we’d like a space that also allows us prep area for exhibits and workshops. You can help us by giving to our general fund at this link. Any amount, large or small, is greatly appreciated. Seriously!

If not, we totally understand. Here are some free and low cost ways to contribute to ART of IF to and the work we do to benefit the infertility community.

  1. Ask friends and family you think would be interested in ART of IF to follow us on social media. We’re on Twitter and Instagram @artofif and on Facebook. You can learn how to ask your friends to like our page on Facebook by following these instructions.
  2. Share a favorite blog post from ART of IF on social media.
  3. Send us your infertility artwork, permanently or on loan, so that we can share it through our exhibits, blog, and website. You do not have to be a professional artist. We welcome any form of expression by those of any skill level.
  4. An image from the series, "Infertility is the Worst" by Kelly Zechmeister-Smith

    An image from the series, “Infertility is the Worst” by Kelly Zechmeister-Smith

    Schedule a time to share your story with us via an oral history interview. Interviews can be conducted in person or via phone or Skype.

    Maria conducts an oral history interview during Advocacy Day events in Washington, D.C.

    Maria conducts an oral history interview with project participant, Angela,  during Advocacy Day events in Washington, D.C.

We consider it an honor and a privilege to collect and share your infertility stories through our art exhibits and oral history project. None of what we do would be possible without your participation and we are grateful every day for what the gift of your stories allows us to do. Please help us continue our work by contributing to ART of IF now.

All the best,

Maria Novotny and Elizabeth Walker, Co-Directors of The ART of Infertility

Taking a Time Out to Grieve During the Holidays – Perspectives from Elizabeth

Thanksgiving, 2009 was the last holiday before my world came crashing down. The illness and death of my sister-in-law, the relocation of three of my nieces who my husband and I had been caring for in my home, our infertility diagnosis.

I’ve been weepy the past few days. Okay, more than weepy. I’ve indulged in an ugly cry a few times. There isn’t anything current that is contributing to this. It’s like my body remembers that we’re entering the season of traumas past and is working through emotions that are rarely as close to the surface as they once were, but must need some attention.

In the months following that holiday season that everything went wrong, it wasn’t hard to grieve. It was something I did constantly, both intentionally and unintentionally. I had a play list of songs, that I’d deemed “sad” that I listened to every day on my commute to and from work. I attended therapy sessions and grief support group meetings, I told everyone who’d listen what I’d been through. I journaled. However, as time has passed, and I’ve adjusted to life without my sister-in-law, without the girls, WITH infertility, I don’t often take time out to acknowledge what I’ve been through and grieve it. Years of unsuccessful infertility treatments, the miscarriage of my twins, the strain that infertility has put on my relationships.

That last Thanksgiving, I saved the wish bone from the turkey and put it in a dish on the shelf above the sink in my kitchen. It’s been there since. There have been a few times I’ve reached inside to make sure it was still there. Traced my finger along its curves. I’ve even taken it out a time or two. It was only recently that my husband knew it was there and that I started thinking that it’s time for the wish bone to move on.

thanksgiving-art

So, I spent some time, intentionally grieving the primary and secondary losses of infertility while creating this piece. Doing so was painful, messy. I had to face emotions that aren’t pleasant and sit with them for a while. It’s a remembrance of the lives that were, a prayer for wishes long desired to come to fruition, and an acknowledgement of not just the fragility of it all, but the strength that we find in community.

While there are many things about this season that are difficult, I’m thankful for those I have in my corner, both at home and around the world, because of this infertility journey I’ve been on. I send you wishes for peace as you enter this difficult season.

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! 

web-dsc_5926square

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.

infertility-medication-app

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.

Artwork Wednesday: An Apple and its Seeds

Back in 2014 at Advocacy Day in Washington D.C. Maria and Elizabeth developed art packs. These packs were designed to provide an outlet of freedom of expression and healing to those affected by infertility.

Did you receive one of our art packs in D.C. and have an artistic story that you want to share that you haven’t shared with us already? We would love to feature your piece in one of our future #ArtworkWednesday posts.

If you’re unable to complete your project, that’s okay. We understand that creating artwork can be intimidating. However, it’s more about the process of setting aside the time and giving yourself some space for a creative outlet than the results.

Recently Elizabeth Sobkiw-Williams created a piece from one of those art packs. Read her personal story and view her moving artwork below:

Elizabeth Walker's untitled piece from one of the Advocacy Day art packs.

Elizabeth Sobkiw-Williams’ untitled piece from one of the Advocacy Day art packs.

Untitled

Elizabeth Sobkiw-Williams

mixed media – yarn, watercolor

I once had a child ask me why an apple had seeds, and I told her that they could be planted and new apples would grow. In that moment I felt like something in nature had gone wrong with me. I was like an apple with no seeds, an anomaly, an end of the line. There would never be a piece of me that would be a part of the world.

I always look for the unique in nature, something to remind me that I am not alone in my struggle. And beauty can be found in these imperfections.

The ART of Infertility as a Research Project

by Maria Novotny

As Elizabeth mentioned in last week’s blog post, we have been a bit quiet this summer. And as you may have learned from reading her post, while we were quiet, we certainly were busy both personally and professionally.

This summer I spent the majority of my time working on my dissertation titled, The ART of Infertility: Conceiving a Participatory Health Intervention Community. As some of you may know, I am fourth year PhD student in Rhetoric & Writing at Michigan State University. My research then looks at how women navigate an infertility diagnosis and use art as method of personal reflection and activism (read more at my website).

This coming May I will graduate and hopefully take a job as an assistant professor of writing and rhetoric at a university somewhere in the United States. My responsibilities in this role would include teaching writing courses ranging from health and medical writing to rhetorical research methods and multimodal composition. But – to first receive a job offer – I need to have a completed dissertation. Hence, a summer of writing all about infertility.

Waking each morning knowing that I would once again be thinking and theorizing about infertility allowed me to really take time to process my own journey. I actually went back to graduate school when my husband and I were first having trouble getting pregnant. As an English major in college, I had always wanted to go and receive my master’s degree so that I could teach at the collegiate level. With no pregnancy on the horizon, and having just moved to a new state for Kevin’s job, I applied and was accepted into Michigan State’s Critical Studies in Literacy and Pedagogy Master’s program.

In this program, I spent two years taking graduate level composition and education courses as well as teaching sections first-year writing. All the while, I quietly continued to try and get pregnant naturally. Graduate school was simply another distraction, until I enrolled in a course titled “Queer Rhetorics.”

Reading Hennessy’s article made me think how much infertility is tied to the production of materiality – literally being capable of producing a child. What happens though when our bodies can’t make a baby?

This course shifted my entire professional identity. As I read books and articles for this class, I started to see my own struggle with feeling often – abnormal. Especially in the case of sex. Few, if anyone I knew, could understand how messed up my sex life was because of infertility. But in reading queer theory, I could begin to find traces of myself in the other stories shared with me.

I began to eventually write reflections on the connections I was making to infertility and began to feel energized in sharing my own struggles and finding a space for infertility in my studies. In fact, part of my final project of this course resulted in several pieces of creative writing. For example, “The House” is a short vignette that is part of The ART of Infertility’s exhibit. My engagement in this course led me to apply for a PhD in Rhetoric & Writing – and long story short — ended up once again at MSU.

For the past fours years now, I have been writing, researching and presenting on what I call “rhetorics of infertility” which examines the meaning-making process of navigating an infertility diagnosis. Partnering with The ART of Infertility allowed me to explore this topic further by looking at how multimodal composition, such as creating art, opens spaces for personal validation as well surfaces a desire to use art as a method of activism.

Facilitating a micro workshop in Houston with the Coalition of Feminist Scholars in the History of Rhetoric and Composition

Facilitating a micro workshop in Houston with the Coalition of Feminist Scholars in the History of Rhetoric and Composition

As I begin my last year in graduate school, I still am not pregnant nor am I in treatment. But I am part of a wonderful organization – The ART of Infertility. And look forward to continuing this research as a co-director with Elizabeth. Through this partnership, we look forward to building a digital archive to provide greater access to narratives and artwork we have collected for the infertility community as a resource for support groups.

As a project that uses art exhibitions as a method to translate embodied, and often invisible or unrecognized challenges of an infertility diagnosis, we hope to continue bringing the exhibit to a variety of audiences. This summer, we were fortunate enough to travel to The Turek Clinic and share this work with physicians, fertility specialists and therapists. And this fall, we are thrilled to announce that we will be traveling internationally to present the exhibition for Merck’s Patient Day in Switzerland on November 9th. The purpose of Patient Day is to help educate staff members about the experience of infertility, and the other diseases and conditions, treated by the pharmaceuticals made by Merck.

8417799418_58864c3574_b

We’ll be flying into Geneva and look forward to collecting infertility stories in the surrounding areas while in Europe.

We haven’t finalized our exact travel dates yet, but for those who follow us in Europe, we will be on your continent for the second week in November, give or take.  Please contact us at info@artofinfertilty.org if you would like to be interviewed for the project.

And thank you to all who have supported this project throughout its journey. Elizabeth and I are truly amazed at your continued enthusiasm for this organization.

The Transforming Power of Visual Art

We’re kicking off fall with a guest post from The Mindful Fertility Project’s Buffy Trupp, MA, LMFT, RCC. In this post, Buffy not only speaks to the transforming power of visual art, but invites you to participate in a virtual exhibit we are hosting this fall, using images from her new fertility coloring book, Coloring Conception: Stress Reduction for Fertility Success. Read on to learn more.

The Transforming Power of Visual Art
Buffy Trupp

Infertility certainly presents like macabre art:  a genetic, physiological, hormonal condition that instantly obliterates our participation in the nature of things, the stream of time.

The attitudes and choices in how we each deal with infertility vary enormously, depending on age, gender, severity of diagnosis and many other personal factors.  But regardless of the medical treatments we decide on, we also choose to adopt a story of infertility: how we got it, how we live with it or through it, and what it means to us in the greater context of our lives.

Stories are essential for human beings.  The human psyche is hard-wired to make meaning.   Unbeknownst to us, and throughout our lives, the psyche connects the seemingly random events that mark and shape our reality and weaves them into a series of images or stories.

These images have great power.   They can make us or break us.  They can make the difference between intolerable suffering or amazing grace.  They can be medicine or poison.

We are born into some images, absorb them as children and live them out without ever knowing it.  They live deep within our cells, in our ovaries, our uterus, in our heart and inform our every move.  These stories can indeed be the most insidious.

But there are also healing images, healing stories; images that inspire and transform us, empower and renew us, restore and liberate us.

Apart from stirring our deepest, darkest fears of obliteration, is it possible that infertility also offers us a healing story?  A story that frees us to heal our lives and shed old, unhealthy beliefs?

Many infertile women believe the death of the embryo, sperm, egg or new born child indicates they are unhealthy.

Did you know it is the ability to surrender, to yield, and the willingness to die for the

greater good that differentiates a healthy cell from an unhealthy cell?

When we allow something to die within us, the formations of our old life, fierce guardians of habit and pattern, fall away, giving birth to a new way of inhabiting our body and mind and we heal.

Death is essential to life.

When did we forget this?

When loss is understood as an essential aspect of health,  women struggling to have children begin a healing story.

Healing stories transform even the most difficult of realities into affirmations of life.

Visual art captures this transformation.

The Mindful Fertility Project and The ART of Infertility believe that the art we create and the stories we tell while trying to conceive are central to our well-being.

We acknowledge both the necessity and benefit of art within the reproductive health field.

We are a move toward acknowledging creativity itself as healing.

And the result, while perhaps not quantifiable, can be measured by the quality of life and transformation experienced by all those who participate.

The images below are from a new fertility coloring book, Coloring Conception: Stress Reduction for Fertility Success.

The colored images and the brief narratives that accompany them are inspirational, evoking both a sense of beauty and an immersion in the most elemental aspects of nature.  The words and visual images reveal that life can imitate art; that we can become the things that we see and imagine; that creation is established through our ongoing relationship with our body, with ourself.

“When I color, my body feels alive.”

webcolor-Day-7_sq

 

“When I color, my body feels beautiful.”

webcolor-No-21_sq

“When I color, my body transforms.”

webColor-Day-22-copy

Be the artist of a new narrative – a new series of images.  Let your canvas be the entirety of your embodied vulnerability, the tenderness of your heart, and the brilliance of your creativity. You can re-write your story, re-color your image, re-wire your nervous system, and find new meaning. No, this is not easy, and will take everything you have… and more.

But new life is already inside you.

While it may seem hopeless at times, you have capacities that you did not have as a child when the original stories, the original images were passed onto you: images of what it means to be a woman, how to metabolize unmet longing, what loss symbolizes, images of your place in the world.

Immerse yourself now in creativity. Choose a color and begin a new image, a new story. Feel a new pathway emerging. And allow it to come into consciousness  – through your art, lighting up your body, your nervous system, and fertilizing your heart with love.

You have not lost your chance.

THIS IS A CALL FOR SUBMISSIONS!

The Mindful Fertility Project & The ART of Infertility are publishing a virtual exhibit this fall.

Go to www.mindfulfertilityproject.com/art and immediately download 4 FREE images from our new adult coloring book, Coloring Conception: Stress Reduction for Fertility Success.

Submit 1 colored image on or before December 15th to be featured in our virtual art exhibit AND for a chance to win 1 of 3 Mindful Fertility Journals valued at ($397) each.

The Mindful Fertility Journal is a virtual, mind-body fertility program that teaches you exactly how to optimize your fertile health naturally. It includes 28 unique mindfulness meditations, 14 easy-to-use self-acupressure videos, 12 easy-to-use yoga videos along with nutritional guidelines and meal plans. PLUS 6 incredible bonuses.

We will publish the virtual exhibit at the beginning of 2017; a compilation of all the colored images submitted.

Once the exhibit is published, we announce the winners of our Mindful Fertility Journal GIVEAWAY.

AGAIN, go to www.mindfulfertilityproject.com/art to immediately download 4 FREE images from Coloring Conception: Stress Reduction for Fertility Success, to learn more about our virtual art exhibit AND to be eligible to win 1 of 3 FREE virtual mind-body programs to optimize your fertile health naturally.

I hope you’ll join us.

All my very best, always,

Buffy Trupp

Summer Stress Relief

As you may know, in addition to running the ART of Infertility, I work in imaging and communications for the University of Michigan Medical School’s Department of Pathology. I was a biomedical photographer for 16+ years and in May, was offered a new position as Communications Specialist. Moments before I received my good news, my colleague announced his retirement. While I was happy for him, his timing could not have been worse. Since July 1st, all of the responsibilities of three full time employees, have fallen to me.

While I love working, and was able to have a pretty good handle on things for the first several weeks, the past couple of weeks have been a challenge. There are never enough hours in the day and the stress of the work piling up is getting to me. Also, since they don’t plan to back fill my old position, and haven’t yet posted my colleague’s position, there is no end in site.

I’ve been pulling out all of the tools I generally use. Yoga, meditation, aromatherapy, art making (including keeping a sketch pad and markers at my desk for doodle breaks), and therapy sessions. Another tool that I often use is to give myself attitude adjustments. I felt like I needed one that would give me a fresh start today. So, last night, I broke out some sidewalk chalk to help.square-sidewalk-chalk-art-therapy

I drew an outline of my head and torso and used the chalk to represent the stress I feel. The anxiousness in my chest, the thoughts constantly filling my head, and the pain that builds up in my neck and shoulder on my left side. It felt good to get out some nervous, stressful energy by marking the pavement and the colors were soothing to me. Then, when I had completed my drawing, I washed it away with water as a symbol of releasing that stress and the effects it has on my physical and emotional well being.

chalk-therapy-composite-art-of-infertility
While today has been another busy, stressful day, and there’s even more work in my pile, I’m more at ease because I took some time out and made a conscious effort to practice self care.

What kind of self care do you practice? Do you think washing away a chalk drawing would be helpful to you? If you give it a try, let us know what the experience was like for you.

-Elizabeth

Nature, Nurture and storytelling through the art of Jen Burdess

Awhile back, Maria and I came across a news story about an infertility art exhibit, One in Eight, that ran at the Ice Cube Gallery in Denver during National Infertility Awareness Week this year. So, naturally we had to reach out to the artists, Jen Burdess and Anne Hallam. We’re happy that Jen is our guest blogger today! Below, she shares how and why she created her artwork and what the experience of sharing it with others has been like for her. Thank you, Jen, for sharing your story!
-Elizabeth

A detail image of Nature, Nurture, by Jen Burdess. The piece was on display in the exhibit, One in Eight, in Denver in April and May, 2016.

A detail image of Nature, Nurture, by Jen Burdess. The piece was on display in the exhibit, One in Eight, in Denver in April and May, 2016.

The inspiration for Nature, Nurture came from the implications of the medical diagnosis of infertility I received three years ago. The diagnosis attacked my identity as a woman. In an effort to reconcile those feelings of loss, Nature, Nurture was created. Though my diagnosis will never change, this work has given me some sort of closure to a period in my life of uncertainty and anxiety. Nature, Nurture consists of three linoleum cuts that were inspired by the anatomy of the breast. They were then hand printed. Each lino cut was printed 136 times. This number corresponds to the rate of infertility in America. One in eight couples will suffer from infertility. 17 out the 136 prints is colored red to represent those with infertility. The lino cuts are printed on used breast pads. The breast pads were chosen as a representation of how far I have come. Without ART (assisted reproductive technology), I would not have had my beautiful son. It only seems right then to use art to record my journey.

The breast pads stretched over 30 feet of wall and was 12 feet high in some places. It was important to me that work was large. I wanted it feel large and imposing, something that could not be ignored. I chose to carve three different designs and printed each in their own color to represent that there isn’t just one cause of infertility or one type of person that it affects. There are many different reasons. Some women never find out the cause. I was diagnosed with stage IV endometriosis. Stage IV indicates that the endometriosis has affected your ovaries and has caused cysts on them. It had also ruined my Fallopian tubes and had caused adhesions and scarring throughout my pelvic cavity. While it was devastating to know the extent of the damage, it also gave me some closure. I had a very clear cut diagnosis. It was very cathartic to devote the time and patience it took to print over 400 breast pads. It was a meditative process and helped me to process the emotions that come along with the diagnosis of infertility.

one-in-8

Nature, Nurture by Jen Burdess.

The response I received from the show was overwhelming. I wasn’t sure how everything was going to pan out. I knew I wanted to open up about my experience did not know what that really meant. How would I feel about talking with strangers about this? Could I handle criticism for my choices? I just wasn’t sure. We had a few events planned during the show. One was being part of a gallery tour. We had four groups of people cycle through the gallery. The gallery was split in two. My work on one side and some formalist artists on the other side. Their work was all about design and color. The contents couldn’t have been any more different. The tour groups went from chatty and happy to somber and silent as I started to tell my story. People thanked me for sharing something so personal and many women shared their stories with me. Simply by speaking up, perfect strangers told me their very personal stories of heartache and the many different ways they had built their families.

one in eight show

Sharing my story was difficult to do but every time I told it, it became a little easier. Infertility is a lonely place. It is very isolating. It calls into question your identity as a woman. From a young age girls play at being mothers. Society expects women to take up this role. Those who choose not to have children can be judged very harshly. Women becoming mothers is an ingrained expectation. That expectation, coupled with a desire to become a mother, is a heavy burden for those struggling with infertility.