Living with an Invisible Illness

Posted on March 23, 2017 by admin

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

IVF Miracle Song – How a conversation with God led to writing a rap and finding community

Posted on January 17, 2017 by admin

Andre and Yolanda Tompkins have waited eight years to have a baby.

After a recent unsuccessful IVF cycle, Andre turned to prayer and music to cope. He created the IVF Miracle Song which you can listen to below.

Afterwards, watch our video interview to hear Andre tell the story behind his music.

This post does include images of babies and the topics of pregnancy and ultrasounds.

Thank you, Andre and Yolanda, for sharing your story with us! We’re thrilled to have it in our ART of Infertility oral history archive.

The Story Behind the Song

“Well, you know, I’m kind of passed the prime age to be pursuing a rap career so let me just throw that out there. I’m a military guy, I’ve been in for 22 years now so this is, that is my career proudly serving my country. But when I was younger, me and one of my best friends, he was actually the best man in our wedding, we used to try to get into the business so from doing that I kind of got pretty handy with the software, making instrumentals, and you know recording yourself.”

“It was thanksgiving week. We were coming off of the disappointing news that the first IVF cycle was unsuccessful. That first failure was so…it was devastating it literally was. I think both of us just sat in the house and we just really just wept all weekend.”

“You know I think going through something as painful as that, you’re obviously are going to have an external reaction but then there’s also that internal reaction that sometimes you just don’t know how to get out.”

“I just started writing. And I was like you know what I’m going to just go ahead and plug the microphone in and just start getting it out. “

“You probably heard how the chorus goes, you know, ‘we’re going to have a baby, we want to have a baby’, and that was really the conversation that I was having back and forth with God. You know, we are Christian. We are firm believers. We were both raised in the south in the Bible Belt and talking to God is something that we both do on a daily basis.”

“So this was almost out of a conversation like you know, ‘I know that I’m hearing you say, Lord, we’re going to have a baby but why did we just experience this? Why is that?’. So I just couldn’t let that go. I refused to give up. I refused to say, well, this is the end. So it was almost like it was more of an edification for myself. We’re going to have a baby, just keep telling myself, we’re going to have a baby. We’re going to have a baby.”

“When I originally heard it, it brought back you know the pain and the feelings that I had originally and it kind of made me feel like you know we’re definitely on the same page. We’re both like okay we knew that this is what we believe God had laid in front of us.”

“It brought hope for me and it became my, I say my theme song because I’m like okay we’re going to do this. I’m not going to give up on this process. So every time that I would listen to it I was like, okay. We’re going to have a baby, you know we want to have a baby, we’re going to have a baby, you know and I think it’s those positive affirmations that you know you tell yourself and eventually, I believe that if you talk yourself long enough, something’s going to happen.”

“So, I wanted to put it on You Tube because I saw that there were IVF playlists but when you would scroll through there was really nothing that would probably be considered urban. So I put it on You Tube and then after that I said, let me just go paste it on a few Facebook pages. I was pasting it on pages in Africa and in India and while I was reading a lot of these posts, I was like, wow, this is really something that a lot of communities just don’t talk about.”

“I can’t speak on behalf of the African American community but as an African American I can tell you that this is something that within our own community, we don’t really talk about a lot. So when you do have these times when you really want a baby but you can’t have one, you feel like you’re challenged in having one, who do you turn to? Who do you talk to? Who can you be transparent with? We tell people all the time, hey this is what I’m praying for but in these areas we don’t be as vocal as we should because we feel like people will judge us or see me as less as a man or maybe less as a female. And that’s not fair.”

“It’s almost like if you’re yelling out into a Grand Canyon, you’re like, ‘Hello out there,’ and you’re just hoping that someone yells back, ‘Hey, I hear you’ you know? And that’s kind of like it was to me. I just wanted to see if in this big open Grand Canyon of doubt and worry and frustration, is there anyone out there that can hear what we’re going through and they can relate and to get all of those responses back was just so positive and so comforting and just encouraging.”

“I actually started thinking maybe I should make a whole mix tape full of… but right now I’m just enjoying this time you know we’re 6 weeks 2 days pregnant today. Yesterday we saw the heartbeat, the little flickering on the ultrasound. My focus right now is just to take care of my beautiful wife, make sure she doesn’t have to lift a finger, and just prepare our family.”

“The fact that I was able to really open my eyes to this community that we’re in just thinking it’s just me and her in this by ourselves and in that moment of pain and in that moment of feeling lost, I found out that I was actually part of a family so to speak, that we’re all in this together and I think that’s just one of the beautiful things that has come out of this.”

“I know everyone is not religious and everyone has different religious preferences but if you can relate to what we’re saying, then don’t lose faith in that message. If that’s what you heard, push through the pain, push through the self-doubt. Push through the failed results, and just believe and trust and know that at the end of the day, God is going to be there for you and your family, and he will keep his promise. That’s the main thing I just want people to take away from it.”

Have you created music or put together an infertility playlist to help you on your journey? We’d love to hear about it! Learn how you can share your story with us. We always welcome your emails to info@artofinfertility.org and your phone calls. You can reach Elizabeth at (517) 262-3662.

Giving Tuesday as a Not Quite Non-Profit

Posted on November 29, 2016 by admin

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.

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!

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.

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.
Share a favorite blog post from ART of IF on social media.
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.
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 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

Going Home with Only One: Loss when pregnant with multiples.

Posted on October 14, 2016 by admin

Today’s guest post is from Darla by way of her blog, Ten Times As Long. In it, she reflects on fears surrounding her twin pregnancy when she knows she’ll only be taking one of her daughters home. This post contains themes of loss as well as ultrasound and pregnancy photos. Thank you Darla, for letting us share your post with our community.

Friday, August 26, 2016

Fearful

(Warning: this post may get a little heavy at times, but these are the realities we’re facing.)

With only about two months to go until D-Day, it’s really starting to sink in that we’re going to be having our baby girls soon. And that we will only be bringing one of them home with us.

And y’all, I am so scared.

Not just about labor, although I have enough mom friends to be more than a little freaked out about labor and all the postpartum goodness that goes on. I’m full of so many other fears. So in an effort to alleviate some of those fears, or at least ease my mind a bit, I’m going to spell them all out here. Fully recognizing how irrational many of them are.

I have 8 weeks of pregnancy left, give or take. It took only about two hours for my entire world to fall apart when we found out about Cate, so 8 weeks is an eternity on that timeline, and I’m terrified that something will happen to Olivia during that eternity. My biggest fear, for whatever reason, is her getting tangled in her cord.
Olivia

I’m scared of being pregnant forever. Not literally, obviously, but longer than traditional “full term.” Not because I’m uncomfortable or TOBP (an acronym my doctor used: Tired of Being Pregnant). But because the longer I’m pregnant, the longer I’m literally carrying the weight of my dead child. Not only is there this mental weight that I’m carrying, but there’s a physical one, too, and it feels like it’s impossible to move through the grief while I’m still carrying that weight.

I’m scared of not being pregnant long enough. I know right now that Olivia would be in relatively good shape no matter when she comes, and really my fear isn’t about pre-term labor. It’s about saying goodbye to Cate’s physical form. I’m terrified of the moment Peter and I have to say that we’re ready to say goodbye and that they can take her from us.

Before we even get there, though, I’m really afraid of the what-ifs regarding Cate’s delivery in particular. Olivia’s will go as normally as a routine delivery can go. But Cate? No one can give me an answer. We don’t know how she’ll come out, no one can give us an answer on what she’ll look like. Will we even be able to hold her? Get her little hand and footprints? Will she even have hands or feet? What about her sweet face? I need something to remember her by, and while I’m sure every doctor we’ve talked to is sympathetic toward our wishes, they just can’t say for certain that we’ll get that. And it’s devastating.
Cate.

The fear of holding my baby girl is overwhelming sometimes. Which makes me feel terrible. But I have no idea how I’m going to feel, how she’s going to look, how I’m going to react to her. So many feels, and I’m so scared that I’m just going to fall apart right when my girls need me the most.

Going home? With only one baby, when we were planning for two for so long? How am I going to handle this? I still walk into the nursery sometimes and think about how there should be TWO cribs in there, TWO names on the wall, TWO sets of clothes. And now we’ll have to take ONE baby out to the car in ONE carrier and put her into ONE crib that night.
At 31 weeks.

I’m afraid this is always going to hurt. And not in the time will make it less painful way, but in the full-on, can’t catch my breath, heart breaking because Peter just asked me “why us,” feel like I’m going to fall apart way. Because I don’t know why us, and I never will. And not knowing makes it that much harder to move through this and get to the other side of the gut-wrenching pain and into the dull ache because my heart is missing a piece.

What if that hurt turns into full-blown PPD? I’m already at increased risk because of my general depression and anxiety. Losing part of a pregnancy only increases that risk. I’ve already requested that Peter and my mother be on close watch, as well as my therapist, but I’m so scared for myself, for Olivia, for my marriage, for everything.

I’m terrified that people will forget Cate. Olivia is going to bring such joy to our family, and I know we’ll all be so focused on her and on loving her. But what about Cate? She needs love, too, even though she won’t be here on earth with us. I’m scared that, as time goes on, people will forget she ever existed, and I can’t stomach that. I need to remember her, I need everyone to remember her, because she was real and was here and will always be a part of our family.

I have so much anxiety going into these last two months that it’s almost stifling at times. I feel like I can’t catch my breath, and when I do catch it and I feel normal for half a second, I feel guilty for feeling normal when none of this is normal. Peter and I met with a hospital nurse in charge of “special deliveries” earlier this week, and every time I looked over at my husband, I thought to myself, “We’re just babies ourselves; we shouldn’t be discussing burying our baby.”

To those of you who have dealt with me during these times, thank you. Thank you for the distractions, thank you for the loving messages, thank you for talking about our girls and remembering that Peter and I are the parents of two beautiful little babies. Thank you for reassuring me. Thank you for letting me talk, vent, cry, talk about morbid things like funeral arrangements with you. You are all such wonderful people, and I know our girls can feel your love all around them.

Darla began her blog, Ten Times As Long, back in 2012 as a way to cope with the sudden surge of anxiety and depression that had plagued her since high school. She found that writing about her experiences and emotions in a way that is raw, unfiltered was her way of facing her problems head-on. The blog has followed her through unemployment, marriage, infertility, pregnancy, and now pregnancy loss. As Suzanne Collins wrote in the third installment of her Hunger Games series, Mockingjay, “It takes ten times as long to put yourself back together as it does to fall apart.” This blog is Darla’s way of putting herself back together, piece by piece.

The ART of Infertility as a Research Project

Posted on September 20, 2016 by admin

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

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.

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.

Expression through Poetry

Posted on June 9, 2016 by admin

Sharing poetry today from Jeffrey Tucker. This poem and other artwork and infertility stories of men and their families will be on display at our pop-up art exhibit on Thursday June 16 in San Francisco from 7 – 9 pm at The Turek Clinic. Free registration at our Eventbrite listing.

We’re excited to be partnering with The Turek Clinic and Men’s Health Network for this event in honor of Men’s Health Month which will feature art making stations, food, drinks, and a peek at the new film If I Could Tell You and a Q&A session with director, Rob Clyde. Sponsorship opportunities are still available. Email elizabeth@artofinfertility.org for more information. Please join us!

Jeffrey Tucker
Artist’s Statement

I believe that writing – especially poetry – is an act of confession. Whether the thoughts expressed in art are joyous, sorrowful, or somewhere in-between (or both, in some instances), the act of comitting pen to paper builds a bridge between the reader and the writer’s psyche, often with an intimacy eschewed in normal conversation.

Which is the say that I tell secrets in my poetry. This poem, in particular, allowed me to express something I would never say out loud. It was both liberating and terrifying to write – an experience (in sentiment, if not in practice) that I have heard many people describe passing through in the journey of infertility: on one hand, you want to scream; on the other hand, you want to hide. Thus, this poem – whose writing process inspired the same feelings in me – in an apt form to convey my emotions.

“On Geography and Biology and the Meeting Thereof.”

(Excerpted from Kill February, forthcoming from Sage Hill Press)
– Jeffrey Tucker

My brother-in-law and his wife: gone,
off to cruise Mexico: siesta
or Fiesta, la Riviera Maya, salted latitudes
south. I picture the two white-footed Utahns
quick-stepping down a burning brown beach,
silver hawkers at hand. They have not heard the stories
I have, of endless squatting in jails
for a wrong U-turn, an unpaid bribe.
Yet I am unconcerned. It’s a cruise,
after all, staffed with smiling deckhands
so eager to pass out Turkish towels
or spray palms with alcohol. If they
died, my wife thinks aloud, they would not
leave our nieces – the four girls – to us.
Since we don’t live in Utah, I say,
and she nods. No family nearby,
not for two thousand miles. And I knew
that my body does not allow us pregnancy, morning
sickness, any of that
lovely fecund wreck. But I did not know that geography
conspired against us at the same time
(not that I ever wish for a death).

The Aftermath of a Male Factor Infertility Diagnosis

Posted on June 7, 2016 by admin

While we have more men sharing their stories with us through artwork and interviews these days, they’re still underrepresented in our project and in the media as a whole. By participating in Men’s Health Month, we’re hoping to shed light on how infertility affects men and encourage more men to use art as a tool in coping with their disease.

In this post from the blog archives, originally posted in July of last year, we hear from ART of IF interview participant and artist, Chas. We’re sharing his artwork at our pop-up exhibit at The Turek Clinic in San Francisco next week, and I just confirmed that he and his wife, Audrey, will be attending as well! Please plan to join us to check out the show, create something of your own at our art making stations, and enjoy food, wine, and the company of others in the infertility community, like Chas. You can get your free tickets here.
– Elizabeth

“We would have cute kids!”

That was the line I said to my wife while we were in college. Forward? Sure. Did I mean it? Yes. Did I know it would take 3 years and 7 IUI’s to finally have a child? Definitely not.

My wife and I wanted to do the things that we felt we had to do before we had kids. You know: get married, careers, buy a house, travel, etc. It wasn’t until my college roommates had their first child in May of 2012 that we sat down and said, “We want a child. We want to experience that kind of love.”

Flash forward 3-4 months of trying, we both felt something was wrong but due to our medical coverage we had to wait a full calendar year of trying to conceive before diagnostic tests could be run. In June of 2013 we were finally referred to our reproductive endocrinologist and the tests began. All of my wife’s tests came back with nothing wrong with her, but I was a different story.

Low motility and low sperm count. That is what my semen analysis (SA) read. I was angry. How could this happen? I have never done illegal drugs, I can count on one hand the times I had smoked a cigar, I workout, eat well, take care of my body, What the hell? Did I do my fair share of the college bar scene? Sure, but it’s not like I drank a fifth of Jack Daniels a night. This had to be wrong. Then the next SA three weeks later had the same results. I couldn’t wrap my head around it. Why me?

I was diagnosed with unexplained male factor infertility. When I was diagnosed with male factor infertility I truly did go though the 5 stages of grief. At first I wanted more SA’s because I was a red-blooded American male and nothing could be wrong with me. Denial. Then when all 5 those SA’s came back the same I was angry at myself, and my body for failing me, with my anger directed towards anyone who crossed my path. I would snap at the littlest things and pick fights just to fight. The anger really stayed for a long time. After that came the bargaining: if I take these infertility vitamins and change my diet that should do the trick. It worked for other people it had to work for me. When the vitamins and diet change didn’t work the depression set in. This is when things got pretty bad. I was truly numb to the world. I disconnected from my wife. She would ask me a question about my day and I would give one-word answers. I couldn’t find the joy in the things I use to love doing. I didn’t want to be around anyone, I just wanted to stay home in the dark. After our 6th IUI failed during National Infertility Awareness Week 2014the acceptance finally started. My wife had posted something on a social media site that she didn’t know other people could see, outed if you will, our struggle to have a child to our friends and family. The cat was out of the bag so to speak. After that only love and support followed from our friends and family. With that love and support we did a picture for NIAW and we also made a team for the Northern California Walk of Hope.

Having to watch my wife take pills and get injections probably was one of the worst parts of the whole IUI process. The pills gave her hot flashes and I handled that pretty well I think. I always had something to cool her down. The injections were hard to watch. I know IVF injections are more extensive but watching her give herself Menopur injections sucked. Watching her do the pain dance, as we called it, always got to me, but the bruises afterwards would bring tears to my eyes. I had to helplessly stand by and watch as my wife had to go through this for something my body was failing to do.

The infertility community as a whole has been so amazing. My wife and I have met so many amazing people going through the challenges of infertility. I don’t think I have ever met that many people that truly pull for you to succeed in that capacity. There is such a kinship in the community that you really do have to experience it and cannot be qualified into words.

If putting my story out there can change one man’s mind for the better about Male Factor Infertility I would feel I accomplished my goal for this blog. Unfortunately, there really isn’t research and support out there for MFI. Why is it on rise? Chemical age? Maybe, but there is no concrete proof. This is especially true for unexplained MFI. There is no need to feel ashamed and disconnected from your partner no matter the diagnosis you are in this together.

Men, Infertility, and Depression

Posted on June 6, 2016 by admin

We hear a lot about how infertility affects women’s emotional well being and less about how it affects men. It’s important that we pay some special attention to how men’s lives are impacted by the disease, especially when, according to the Centers for Disease Control, suicide is the 7th leading cause of death for all men in the United States and there are 4 times as many deaths to suicide for males than females.

We have found that art and writing can be a great outlet for dealing with the stress of infertility and are excited to team up with The Turek Clinic in San Francisco for Picture Your Fertility: An Interactive Art Event for #MensHealth. It’s an opportunity for men to let out some frustration through guy-friendly art and writing stations, get information about health and well being, and learn they aren’t alone in their infertility through the artwork, portraits, and stories of other men and their families dealing with similar situations. This free event is open to the public and will be held on Thursday June 16 from 7 – 9 pm. You can get your tickets here. We hope you will join us! In the meantime, check out this great info, below, from Austin Klise’s HuffPost Healthy Living Blog 4 Strategies to Help Men Get through Depression.

4 Strategies to Help Men Get Through Depression
by Austine Klise
HuffPost Healthy Living Blog

Tip #1 Understand His Depression “There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.” ― Laurell K. Hamilton

One of the largest misconceptions about depression is that it is a feeling – which is part of the reason men are so reluctant to talk about it. Yes, it is a feeling but it is also much more. Not only does it effect people on an emotional level but it also drains them physically and psychologically. The chemical imbalance in the brain slowly causes the body to shut down. That is why if your partner is depressed, he will be lacking the motivation to hit the gym or to pursue a once cherished hobby. With this in mind, the first thing you can do to help is make sure he is eating a balanced diet and is exercising. Buy fresh food, avoid stocking the fridge with highly caffeinated products and booze, and see if he will go walking with you. These are all easy and are tremendously helpful, but won’t necessarily combat the depression itself. For that, we go to Tip #2.

Tip #2 Acknowledging His Depression “Never ignore the elephant in the room. That’s rude; play with it and introduce it.” ― Donna Lynn Hope

Confronting his depression will be tough but is absolutely necessary if you are going to help reverse its course. What you’re going to be doing here isn’t confronting him and telling him he is depressed. Trust me, he knows he depressed or at least that something is wrong. The goal is to show him that you acknowledge he is going through something and that asking for help is okay. I’ve broken it down into
four steps –

Approach him where he is comfortable, at home or maybe your favorite date spot. Make sure you have privacy and enough time to talk (at least an hour).
Tell him you noticed he has been “feeling down” lately. I would avoid using the word “depressed” because it could trigger the walls to go straight up. Bring up examples – but do so in a gentle way.
Explain your mutual goal – you BOTH want him to feel better.
Depressed men feel isolated in their pain and hopelessness. Explain that asking for help is a sign of strength not of weakness.

Tip #3 Self Care “The Best Health Care Plan Is A Self Care Plan” ― Nina Leavins

“In the event of a decompression, an oxygen mask will automatically appear in front of you. If you are travelling with a child or someone who requires assistance, secure your own mask first, and then assist the other person.”

If you’ve ever been on an airplane you’ve likely heard some iteration these words. While growing up they confused me because it seemed like it would make more sense to help the helpless and vulnerable first, but with age I realized that if you are incapacitated you won’t be of any help to anyone. The same goes for caring for a man with depression. You need to secure your own mental stability before you can help him.

The difference in a situation with male depression as opposed to other diseases is that the frustration and stress isn’t going to come in the traditional way. You won’t be stretched thin providing medical assistance to him or running back and forth from a hospital. But, rather the emotional connection you have with your partner will be taxed. Because of the nature of depression he won’t be as connected or invested in your relationship as he was when he was healthy. He might become more combative or more withdrawn, depending on how the depression affects him. Don’t get pulled into this or take it personally. Do what you need to do to stay healthy. Connect with friends, exercise, or shop – you have an identity outside of your relationship.

Tip #4 Involve the Professionals

Getting professional medical personnel involved is the most critical step as it is the most effective way to cure the depression. I understand it can be incredibly hard to get a guy to see doctor, for even the most routine of checkups, let alone getting him to see a therapist or psychologist for depression. Here are some ways to make it easier:

Ask him to do it for you or your family. Tell him it will bring you peace of mind if he sees someone.
See the right doctor – Ask if you can set up an appointment with your family doctor so they can go over the problem. It will be an easier push for him to see a family doc as oppose to a “shrink.”
Call ahead – Tell the doctor what his symptoms have been. Your testimony might bring up things your partner could miss or will neglect to share.

#startasking How can I find support in my infertility journey?

Posted on April 27, 2016 by admin

Infertility can be one of the most isolating, lonely experiences out there. It’s essential to connect with others who “get it” but it’s not always that easy to do so. In today’s post, Sarah Powell shares the story of reaching her breaking point and reaching out for support. Several months ago, Sarah approached me about starting the ART of Infertility Pen Pal Project as a way to connect people with similar stories for friendship and support. So, we are happy to launch it today during National Infertility Awareness Week. Read on to hear Sarah’s story and learn how you can be matched with an Infertility Pen Pal who shares a similar path.

Elizabeth

It isn’t all that often that people who are diagnosed with infertility are brave enough to share their story. That is exactly how I felt when my husband and I received our diagnosis seven years ago. At that time, my way of dealing with infertility was going to different doctors, four different clinics in fact, hoping that one would give me a different answer than the last. Then, taking a lot of time to research and process what they told me. For the first few years, I barely talked to anyone about it, sometimes not even my husband, and dodged questions from everyone left and right. I tried to put on a happy face at baby showers, birthday parties, family events, and with the pregnancy announcements of what seemed like EVERY. SINGLE. ONE. OF. MY. DEAREST. FRIENDS. I emailed my closest friends and family and told them NOT to ask questions. I didn’t know the right path forward and my husband didn’t know what to say and when to say it no matter how hard he tried. Everyone who has ever dealt with infertility knows that you feel very, very alone and most times responsible with every failed test you get but need to keep forging forward with the rest of your life. It is an AWFUL, ISOLATING feeling.

A lot of times in our lives, people near what we call our breaking point. One thing happens and it just pushes you over the edge. As it relates to infertility, I remember moments of mine, though not all the finite details. It was a Saturday morning and my monthly visitor had shown up yet again when I would have given anything for it not to. I woke up that day and was in an awful mood, likely yelling at my husband about everything insignificant, poor guy didn’t stand a chance that day. Because I was in a bad mood, everything was overwhelming me, laundry, dishes, errands, the list went on – but they were really just daily tasks that suddenly became impossible. I decided to do some dishes and was at the sink furiously scrubbing glasses, crashing down plates, and almost throwing the pans. At that point, my husband who was trying to be helpful said something related to infertility or my period coming or something like that and then I BROKE. I remember almost falling to the floor, sobbing and having him pick me up and carry me to the couch where I just sobbed and sobbed for what seemed like hours. I tend to not share my feelings, and while my husband was doing his best, he wasn’t the one responsible for my infertility and he wasn’t infertile himself. I realized I needed to find someone like me, someone who could understand my diagnosis, someone who could relate.

Sarah, top left, on the “Contribution Tree” in the first ART of Infertility exhibit at Ella Sharp Museum in Jackson, MI 2014.

I searched and searched the Internet. In a world that has become so electronic and saavy with social media, I was shocked to find there wasn’t an easy way for me to reach out to others with my disease. I wanted a phone number, an email address, something. I tend to be an introvert so it’s not easy for me to connect to people, it was very daunting. Add the taboo subject of infertility and it made it that much more difficult. I did find information on support groups in my area – but just kept the information in my mind for several months because I was TERRIFIED. Eventually, after much coaxing by my husband, I did attend a meeting but lets be honest, meetings and support groups aren’t for everyone. I realized that there has to be an easier way for those to connect privately from their own homes to people who are like them.

I realized I needed to find someone like me, someone who could understand my diagnosis, someone who could relate.

Sarah and Elizabeth at Advocacy Day in 2014.

As a result we are happy to introduce the Infertility Pen Pal Project. This project will allow us to connect individuals on a one-on-one basis who have similar backgrounds and diagnosis. Friendships in the infertility arena can become difficult because while the goal is for people to find success, if you are one of the ones who hasn’t yet, you struggle between being happy for your friend but sad for what you want so badly. We want to be able to connect you to people who are where you are, and reconnect you with someone else if you just don’t click or your penpal finds success and it’s hard for you to handle. We are hoping this project will help some overcome the feeling of being alone when talking to a group about your story is too much. Since this is National Infertility Awareness Week, we encourage you to #startasking for what you need so you can get that support. We hope that the pen pal project will make it a little easier for some of you.

If you are interested in participating, fill out the web form at this link and we will be in touch.

Art through the Infertility Poetry of Michelle Baranowski

Posted on April 13, 2016 by admin

There are many different forms of artwork that brings people comfort. While some enjoy painting or music, many enjoy poetry instead. Michelle Baranowski is one of those people who find comfort through writing poetry. Poetry is yet another way for people to vent out their frustrations and let the world know how they really feel in a creative way. It is a way to express the pain and sorrow that one is feeling and give people the chance to read and relate to it in a completely personal way. In her poem “The Middle Place”, she explains what it is like to be stuck in between utter happiness and devastating sorrow.

While other kids were saying they wanted to be an astronaut or a princess, Michelle always wanted to be a mom. She could have never guessed at that age that she would not be able to accomplish her lifelong dream of conceiving a child. As she grew up, her childhood innocence was shattered and she realized that it was never going to be as easy as she thought it would be.

When Michelle was a young adult she came out as a lesbian so she knew that there was going to be a less “organic” way for her to conceive. She just knew she was going to have to go about becoming a mother in a different way. Still, she believed that it would happen and couldn’t foresee the struggles that she was going to face in the future to accomplish her lifelong dream.

She is now 30 years old and, after years of trying, she has still not had the ability to get pregnant. It has been a long journey of pain and sorrow, as well as constantly getting her hopes up only to have them smashed by each negative result. She feels as if she is just coexisting in the middle place between pure joy and devastating pain, which is something that many people dealing with infertility can relate too. She decided to share her poem with others so that they can catch a glimpse of what she is feeling as she continues on this journey to having a child.

You can listen to Michelle read her poem, or read it yourself, below.

– Danielle

Michelle, right, with her wife Mandy on their wedding day.

The Middle Place

by Michelle Baranowski

I often talk about the middle place.

The waiting space.

It’s where I find myself most.

Weighted down by time, suffocated by hope.

Not moving forward, not falling behind.

Just walking in circles.

Convincing others “I’m fine”

Incarcerated by a love that burns through the skin and seeps out through weepy eyes.

Anchored by a financial hole I’ve fed, pleading the promised success isn’t a lie.

Like trying to fly a kite, teeming with bricks.

Like a bird, dreaming to fly, with it’s beautiful wings clipped.

Like trying to breathe underwater.

Only to learn you’ll survive.

drowning on the inside, yet seemingly alive.

When the house seems too big

but the accounts are too small

when we learn about families growing

with an anxious, happy call.

Like a bullet to the chest, but with my smile on tight.

My soul defeats and decides whether to fight or to flight.

Sometimes I can get out “I’m so happy for you”

And other times, a nod and a smile is all I am able to do.

The weight of sadness and worry follow me all of the time.

Fretting over savings accounts, credit cards and counting each dime.

Not knowing if our efforts will take flight or be in vain.

Its enough to make even the soundest person insane.

I wish that I was brave.

I wish it was easy to decide

Weather to move on from all of this

Pushing lifelong dreams aside.

I wish I knew for certain that one day I would hold in you in my arms and not just my heart.

It would make the fight all worth it.

Knowing we would never be apart.

So the middle place is where we continue to be.

Waiting, and saving in painful hope.

Waiting for you to set us free.

ART of IF

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

Category Archives: healing through writing