What IF?

Today, we’re sharing another piece from SEA-ART-HEAL: The ART of Infertility in Seattle. A huge thanks to Barrie Arliss and Dan Lane for submitting this piece and allowing us to keep it for our permanent collection! #artheals

What IF?
Barrie Arliss (with Dan Lane as illustrator)
graphic novel

A page from “What IF” – A graphic novel by Barrie Arliss, illustrated by Dan Lane.

1.5 years of every hippie method possible, I successfully got pregnant with one IUI. He’s perfect, and now almost 4 years old. We thought trying for a sibling would be as easy as doing that IUI…and we were wrong. I’ve heard so many stories from friends or on TV or through doctors how eventually—either with time or the right amount of persistence with treatments, I’d get this magical baby we wanted. But we never did.

2 years, 3 failed IUIs, countless cancelled cycles, 1 retrieval, 1 really horrible allergic reaction, and 3 failed IVFs later all I had at the end was 1 miscarriage. I never thought I would come out of this with nothing. After all the money and hoping and acupuncture and cutting back on running and eating more liver and so on and so forth, I thought that science would win. I hadn’t heard of the stories where people aren’t successful. Where no surprise baby suddenly happens after a year of ending treatments. No one seemed to talk about those. So the next year I did some major self care, and this graphic novel has been my outlet for healing. I may never get over the fact that we don’t have the family we dreamed of, but we’re moving on and creating this book for others who might be going through what we went through is helping.

These two pages of What IF, the graphic novel, depict the first time I had to give myself a shot of hormones for my 1st upcoming transfer. My husband wasn’t around that evening, and I thought I could do it–because I’m strong and independent and all the typical feminist stuff…but there I was, in the kitchen completely frozen with fear. If you can relate, I’m sorry and also, hugs!

Launch Point

Ben Holladay-McCann shares some of the challenges he and his husband face as gay men building their family. Read how they decided which option was best for them and how creating art is playing a role in their quest to become parents. Thanks, Ben, for sharing your story!

Launch Point
by Ben Holladay-McCann

From a young age, I knew that fatherhood was something I aspired to. The fact that I’m gay never phased me or stood out as an obstacle to achieving that dream. Sure, I knew it would be a challenge — the scales are tipped in favor of heterosexual people – though I’ve always been of the mind that any journey worth dreaming about is a journey worth taking, no matter the odds.

Ben (right) with husband Erik. Photo by Kendra Stanley-Mills.

Erik, my husband, shares my dream of raising children together. At first, we had explored the idea of adoption, which, though an awesome and noble avenue to take, can prove hugely challenging for LGBT folks. Most countries outside the U.S. will not adopt to gay parents. In a strange twist of happenstance, the governor of Michigan signed legislation permitting faith-based adoption agencies to discriminate against LGBT parents not long before we relocated to Colorado. Our home state is not unique in that regard, as several other states allow the application of the petitioning couple to be denied based upon nothing more their sexual orientation.

Though adoption was quickly removed from the table, we uncovered a new and more fundamental truth that lived deep within us; holding a genetic relation to our child was of greater importance to us than we had first known. With that in mind, having a child through IVF via gestational carrier as the path to parenthood was the only logical option for us.

Making the decision to pursue that route was the easy part, though it is not without its own unique set of challenges. Like so many others, our biggest roadblock was attached to the price tag. I remember staring slack-jawed at the full sum once everything had been tallied up. The total cost of IVF treatments is positively eye-watering. Resources to lighten the load do exist, though the majority are geared towards heterosexual couples. Most applications for grants or financial assistance list “husband” and “wife” on the form, rather than “partner’s name”. Even “Parent 1” and “Parent 2” would work in a Suessical pinch.

To complicate matters further, information about LGBT-inclusive adoption agencies can be tricky to find. Surely you can understand our sheer joy when we found an aptly named organization that exclusively helps gay men who want to have a child through IVF – “Men Having Babies”. Using the tools on their website, we poured over all available information and researched many different organizations nationwide before selecting InVia Fertility, out of Chicago. With that important line crossed off, we could turn attention back to the elephant in the room: how make this happen financially. As money savvy as we fancy ourselves to be, our piggy banks wouldn’t provide enough of a springboard on their own. We had to broaden our sights to help make this dream real.

Ben and Erik, surrounded by loved ones. Photo by Kendra Stanley-Mills.

Education is an important component of any fundraising effort, and we are not unique in that regard. As a part of this process, we have sought to bring awareness and information to our friends and family. Try as we have, however, some have made the assumption that adoption, rather than IVF, is the end goal. On more than one occasion, well-intentioned people have asked “what country will you adopt your child from?” or “have you met the birthmother yet”? We are surrounded by people brimming with excitement for us to become fathers, though some may be unaware of the complicated nature this road holds for us. Launching a crowdfunding site hosted by YouCaring.com has provided an effective platform to keep our loved ones up-to-date on our journey while serving to dispel any mysteries surrounding IVF and what that looks like for us.

Ben’s passion for knitting is helping build his family. Photo by Erik Holladay-McCann.

More creative means of capital generation are also supplementing our crowdfunding efforts. I have been a knitting hobbyist for years, though this new adventure of ours provided me the push to begin selling finished works and patterns of my own design, under the brand “NoahNoa Crafts”. Though a seemingly unusual brand title, it was born from the love that my husband and I have held for the name, Noah, for years. When translated from its original Hebrew roots, it embodies “comfort”, while its feminine variant, Noa, signifies movement. It only seemed a natural fit, as those are two qualities I love most about knitting, and hope to model to the children we bring into the world. While getting a small start-up such as this off the ground can be time-consuming and occasionally stressful, it is ultimately rewarding, which is not entirely different from parenthood.

Follow Ben and Erik’s family building progress on You Caring and shop NoahNoa Crafts.

Infertile Enough?

Today I am dedicating the blog to National Infertility Awareness Week and to the launch of Justine Brooks Froelker’s latest book The Mother of Second Chances, based on her blog Ever Upward releasing on April 17th. For five weeks 25 amazing women will share their stories of infertility and loss as part of this incredible blog tour, because together we can shatter the stigma. 

Yesterday Jody shared her story and tomorrow we will hear from Heather at Beat Infertility. We would love for you to participate by sharing these posts far and wide. We’d especially love to see your own broken silence by sharing your own infertility story using the hastags: #NIAW, #infertility and #EverUpward. 

When I first started trying to conceive, I was convinced I would get pregnant immediately. When I didn’t, I wasn’t too concerned. I’d been on hormonal birth control for over a decade and it can take some time for cycles to return to normal. However, as time passed, I was feeling more and more anxious and isolated.

Having turned to a support group after my sister-in-law died, I felt like I needed one for infertility. However, I didn’t feel like I had suffered enough. I hadn’t even started taking Clomid yet. Surely the support group would include members who had been through far more than I had. Would they feel like I was making a big deal out of nothing? Did I belong there?

After a year or so, I took the plunge and attended my first group. What I learned was, that, even though there were individuals in my group who had been dealing with infertility for much longer than I had, came from different backgrounds, and were at various stages of treatment, the emotions that we had were the same. They understood me in a way that others could not.

Still, in our pain, it was easy for us to judge each other and for us to compare stories. I was in the two-week-wait of my first intrauterine insemination (IUI) when I went to that first meeting. I had insurance coverage for IUI, so my husband and I decided that we would do 3 or 4 before considering moving on to IVF.  It didn’t take long and it was time to make that decision.

I didn’t want to do IVF. I mean, no one WANTS to but I was really struggling with it. It was a tough decision. One that took me seven months in therapy to make. I was resentful of all the decisions infertility was forcing me to make. The average person decides they want to have a baby, throws birth control out the window, and before they have a chance to second guess things, is pregnant. Infertility requires us to make decisions at every turn and gives us time to doubt each decision we make.

My husband and I decided that doing one cycle of IVF was the right choice for us. Here are the meds from the retrieval and two resulting frozen embryo transfers. On display at the A/NT Gallery in Seattle, April 1 – 30, 2017.

One of the things I was struggling with the most was how others might perceive my desire to be a parent if I wasn’t willing to go to any length to become one. If I never tried IVF, and moved on to adoption or living child free after my four unsuccessful IUIs, would that make me a less infertile infertile? It was something that I joked about with my fellow support group attendees to try to ease the tension but it really wasn’t that funny.

Through therapy, I was able to come to a point where I was comfortable making the decision that I felt was best for me and for my family, even if others may judge it. Dealing with infertility taught me that no one can truly know what they will do in a situation until they are faced with it. And, the right decision for one person, will be completely the opposite for the next, and that’s okay. Just because a person wasn’t willing to exhaust every financial, physical, and emotional resource, doesn’t mean that they didn’t want to be a parent badly enough. There’s no giving up. Just choosing a new goal, based on the hand that we’ve been dealt.

Eight years after I first started trying to conceive, I haven’t completely resolved my infertility. I’m not sure if my story will end as a parent, or as someone living child free. However, I’ve found peace, and my own infertility success story, through my work with The ART of Infertility.

I no longer judge myself based on what others would think of me and that’s part of why it’s so important to me to collect and distribute diverse stories of infertility through the ART of IF oral history project. I had a choice to pursue IVF or not. However, so many people deal with financial infertility and IVF is not even an option. We don’t hear those stories and they are important.

We often hear the stories that end with a baby. However, not every infertility story ends that way and the stories that don’t are important.

Infertility doesn’t discriminate. It affects people from all races. However, as one African American woman we interviewed said, “Infertility doesn’t look like me, and that can be lonely.” The infertility stories of men and women of color are important.

Your story, no matter where you are in your journey, is important. So, please, if you are debating whether you are “infertile enough” to attend an infertility support group, you are. If you are wondering whether you’re a less infertile infertile because you are choosing adoption over IVF or drawing the line at third party reproduction, you’re not. Don’t let what others may think keep you from finding support. We all have to make our own decisions and do better to respect the decisions that others make. We are all in this together.

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

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

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.

 

 

My Donor Egg Baby Is Five

by Robin Silbergleid

Before I took the plunge into becoming a single mother via donor gametes, well-intentioned friends (and strangers on the internet) told me that once my son was born being his mother on a day-to-day level would eclipse DNA.  My doctor, on the other hand, cautiously warned me she had a patient who never managed to bond with her baby born of donor eggs.  Both these scenarios seemed unfathomable to me.  And, indeed, even as I loved him ferociously from the moment the second line came into focus on the home pregnancy test, for the first years of my son’s life, there wasn’t a day that passed that I didn’t think about the years of fertility treatment and anxiety-ridden high risk pregnancy that followed, that I didn’t wonder about the egg donor who provided her DNA.

At some point that mental-spinning stopped.  It’s hard to know when.  But I suspect now, looking back, it was around the time my son turned four, after the fog of hormones and sleeplessness faded, when I published a book about IVF, started participating regularly with the ART of Infertility, and offered to donate my remaining embryos.

candles_lit5My son is now five, and daily I run the gamut of emotions that go along with being a mother to a preschooler.  Impatient that it’s taken a good fifteen minutes to get him into the bathtub. Anger that he’s thrown his shoes (for reasons only understood by small children) up to the ceiling to crash down on the lamp in our entryway.  Delight at helping him climb into a crabapple tree.  Pride that he gives his only dollar to the homeless woman at the entrance to the highway.  Nostalgia for those days I rocked him for hours in glider, at once grateful he existed and desperate for him to sleep.  Our relationship, as all mother-child relationships, is both extremely complicated and pure.

I have not yet told him about his origins, as he’s barely begun to ask about ‘how babies are made’ in the usual sense; using his best preschool fantasy, he’ll talk about how he was alive when I was a baby in grandma’s tummy.  In a more immediate way, we’ve needed to address the fact that he doesn’t have a father, although because we’re not at the sperm-meets-egg part of the story, even the term ‘donor’ hasn’t made it into our lexicon.

It’s not a big deal.  And, indeed, I rarely have the moment that I think about the fact that my relation to him is different than my relation to his sister, conceived the ‘easy’ way via unmedicated IUI.  But I am still caught off guard when someone who knows something, but not everything, of my story observes that this fair-haired boy looks a bit like me (huh?).  It’s in that moment I remember the kind-eyed woman smiling at me in the clinic waiting room for one of those too-early morning ultrasounds in the week leading up to IVF retrieval, the woman I’d never seen before in all the months I’d been there, the woman, as I remember, who, in fact, looks a great deal like my son.

I will never know who she is, as I deliberately worked with an anonymous donor and declined all but baby pictures.  She is not part of my family, although her generosity made it possible.  As my son grows, as that sperm-meets-egg moment recedes in its significance, I continue to rewrite our family narrative.  On my son’s birthday this year, the friend who accompanied me to embryo transfer and–exactly 37 weeks later– his birth, presented me with a black and white photo taken in the recovery room, where I held my swaddled newborn and my then seven-year-old daughter looked on with a soft smile.

This is not an argument for why you should do a donor egg cycle if you’re thinking about it, or even acknowledgment that those well-intentioned strangers were mostly right.  My thoughts on having a child via egg donation have changed many times, and I have no doubt that they will change again, as my son grows and asks questions and as working on ART of Infertility continues to reframe my own infertility story.  Now more than five years out, I can say the gift of infertility is in the relationships it made possible, and for that I am eternally grateful.

 

Our Misconception: Chris and Candace Wohl

Our Misconception: The Story of Candace and Chris Wohl
by Jalen Smith

Earlier this year we had the pleasure to sit down with The Wohl Family as they shared their story and long journey to parenthood through gestational surrogacy.

Candace and Chris are a married couple living in Virginia that has struggled to conceive. Candace underwent 5 IVF cycles between a 2 year period, after 6 failed IUIs.

“Each bead represents a shot,” Candace told ART of Infertility’s Maria Novotny, when showcasing a piece of her artwork. The process of having a baby has been a process hard physically, emotionally and financially for the family.

Chris and Candace chose to string a bead for each shot Candace endured.

Chris and Candace chose to string a bead for each shot Candace endured.

“We were judged and told by family and friends to not fundraise, that this issue should have been kept private, we were even told to just adopt.” said Chris. The couple’s story is a popular one within the infertility community and was featured on an episode of MTV’s “True Life” in 2013.  “It was such a seesaw of emotions, from hope to despair from hope to despair,” said Candace. “There was point where we wouldn’t let ourselves get our hopes up just to be let down again.” MTV did a good job of capturing and telling the emotional heartache involved with infertility. “It was hard for us to watch as we had to relive our last failed IVF.”

The Wohl family eventually found hope in surrogacy. In March 2013 the couple began to start the process to pursue other means of child birth. After finding a surrogate in June 2013 the couple then began the contract signing process and had to wait an additional six months for pregnancy insurance clearance. “The waiting was hard for us, the not knowing if it would work out this time.” In October 2013, they transferred their two remaining embryos to their surrogate.  The following month, the couple received the news that they were pregnant, the beta was positive.

Candace wanted to tell her husband the good news that they were pregnant in the best way possible. She shared with us the story of the dusty onesie. “After my first IUI, I was confident and I went out to buy this onesie and card to share with my husband that we were pregnant.” Similar, to those other vulnerable yet monumental moments in life like marriage, she wanted this moment to be special. She wanted it to last. After 6 failed IUIs, Chris had still not seen the onesie, not until that celebratory day in November 2013. “It was one of those things that I held onto, I couldn’t let it go, I’m glad I didn’t because I was fortunately still able to share it with him.”

“It brought it all home to me that she really has endured so much” said Chris after hearing and seeing the dusty onesie story for the first time. The fact that she had kept it for so many years and had taken so many “beads” was a telling story of their struggle for him.

the-dusty-onesie_7280

Chris and Candace with the dusty onesie.

“What people don’t understand is we were trying to adopt, there were a lot of people that didn’t agree with surrogacy when it first came out,” said Candace. “We realized early that we had to get tough skin.” To share their story of surrogacy was at first difficult, while the Wohl family can be considered well known members of the community now, the option to choose this route to start their family was troublesome for them.

“If you would have asked me 7 years ago that we would be doing this, I would have not believed you,” said Candace. At the time the couple was in full belief that they would be able to carry a baby to term but years of surgery and failed treatments denied these hopeful parents time and time again.

When the parents to be accepted surrogacy it did come with lots of doubts and concerns for the future. For Candace is was like watching a quarterback play football and she was watching from the sideline. “You hope they can break the tackles, you hope nothing gets in their way on the game winning drive but all you can do is cheer them along.” Candace said. It was a very vulnerable place for her to be, in one in which all she could do is watch and place her hopes for motherhood in the hands of someone else. Chris and Candace were in the room with the surrogate while she was giving birth. Candace held her leg while she pushed and Chris cut the umbilical cord. While their daughter’s birth certificate did not initially feature either of their names, they immediately bonded with her.

Many forget to mention the struggles infertility have on men or many feel the struggles of infertility are not a man’s right to feel bad. The couple briefly talked about this in their sit down with us. After all, it was his wife’s body. But Chris during his sit down with us shared his thoughts on the process. “I was the parent too” Chris said. “My gender is a strong yet vulnerable one, I could never know her full pain but I was there for her the entire ride.” Chris felt that taking a back seat was not an option for him.

Ultimately the couple’s fears of lack of emotional connectivity, lack of compassion from doctors and guilt were lost once their daughter was born in 2014. “All of the worries I had were lost once she was here, I never felt closer to anyone,” Candace stated.

The Wohl family fought a lot on their journey to parenthood, it was never easy, but what they want to do now is educate others. Educate hospitals, doctors and lawyers so that the next couple does not have the complications they did. “It all starts with education,” Candace closed.

To learn more about the Chris and Candace’s story read their blog at ourmisconception.com

“You can’t have kids? Here, take mine” and other hurtful things said to those with Infertility.

Over the weekend I went to visit a dear friend and her beautiful triplets. On the way out of her neighborhood, I stopped at an estate sale. I always find it interesting to see what kinds of items are being sold. Furniture, old family photographs, fashion from across the decades. As I was browsing, another customer was negotiating a sale with the woman running it. He wanted the book case, but would have to pick it up later since there wasn’t room for it in his vehicle with his kids in tow. “Unless you want to watch them?” he teased. “Hey, you can even keep them if you’d like!”

The woman replied, “No, I can’t have my own kids. I’m certainly not going to watch yours.” Internally, I shouted to her, “You go, girl! Good for you for speaking up!”

The man responded by telling her he believed children were a gift from god. It’s all according to his plan who gets them and who doesn’t. Some people have 12 kids, and some don’t get any, he explained.

I’m imagining after reading the lines above, you are having a similar reaction to the one I had, and I imagine the woman who was running the sale had. Cringing and filling with both intense anger and sadness. I was immediately filled with a desire to educate both of them about The Art of Infertility. The woman, for support, and the man so he might think about how the words he speaks could affect the people who hear them. They both received my business card and an elevator speech about the project.

After that experience, I thought it might be a good time to re-run a list of hurtful things and helpful things to say to those with infertility that we’ve compiled from ART of IF participants. We originally ran this content in December of 2015.

Which of these items have you heard the most? Is there anything you would add?

-Elizabeth

Hurtful

1 “’Oh, you are still young, you have time’. Being young and having time has nothing to do with what caused my infertility. Infertility is not a disease that only happens to women over 35, it can happen to any woman at any time.”

2. “When are you going to make your mom a grandma?”

3. “‘You can always adopt.’ This minimized that pain that I was experiencing at the  possibility of not being able to have a child that was genetically mine.”

4. “’Once you stop trying you’ll probably conceive naturally’ – by countless people who apparently can’t comprehend that when you don’t have tubes this is impossible. And, yes, I am a strong Christian woman and believe anything is possible for God – but without a delivery system, if I became pregnant it would be with the 2nd coming of Christ and I don’t really know that I could handle the responsibility.”

5. “Infertility is nature’s way of population control. ”

6. “I had a coworker say to me ‘no one else in the office is pregnant… I think you should be next!’ I had to just try to laugh it off and made some sort of reply like ‘yeah, yeah, maybe soon!’ When she made a comment after that about maybe I’m ‘just a dog person,’ that is when I felt like telling her about our struggles, and although I am a ‘dog person,’ I also hope to be a mother someday as well.”

Inconceivable by Aine Quimby. Oil on canvas. Part of the ART of IF collection.

Inconceivable by Aine Quimby. Oil on canvas. Part of the ART of IF collection.

7. “‘Who has the problem with not getting pregnant, is it you or your husband?'”

8. “Variations of, ‘I don’t know what I’ve do without my kids’, ‘My life wasn’t complete until I had kids’, ‘Being a parent is all that matters’, ‘Being a parent is the most important job in the world’, ‘You don’t know love until you have a child of your own'”

9. “We got them all!   ‘You’re doing it wrong.’,  ‘Maybe you weren’t meant to be parents’,  but my personal favorite was from an old man who told my husband ‘Let it soak.’  – Still to this day have no clue exactly what he meant but we laugh about it.”

10. “We are Christians and regular attending members of a Seventh-Day Adventist Church. We had people say to me/us ‘well if it is in God’s plan you will become parents.’ The people who said this were parents. My thoughts were: so God thinks you will be a better parent then me? – I doubt it. So for all the people who abuse their children and have them removed from the home, and traumatized by their parents are apart of God’s plan, but me not being a parent is? – I doubt it!”

11. “‘You can borrow my kid(s) if you want.’ or ‘Do you want some of my kids? You can have them!’”

12. “Sometimes it’s what people don’t say that hurts the most. My friends have had more babies than I can count in the last 4+ years. Every time I go to the baby department and buy them gifts. It rips me up and takes everything I have to hold in the sobbing until I get to the car. I think people take it for granted. Not once has anyone ever said, ‘Wow, that must have been really difficult for you. Thank you for loving us so much that you would subject yourself to that hurt.'”

“Don’t say, ‘My life wasn’t complete until I had kids’, ‘Being a parent is all that matters’, ‘Being a parent is the most important job in the world’, ‘You don’t know love until you have a child of your own'”

13. “‘Everything happens for a reason. It will happen when it is meant to happen.'”

14. “A lot of people always refer to the most common phrase during the infertility journey, which is to ‘just relax and it will happen.’ As much as I wish ‘relaxing’ would cure that, it doesn’t.”

15. “‘I know it will happen. You just have to give it time.’ No one can know that the treatment will work and I felt like it minimized my pain.”

16. “’My friend was going through the same thing, and when she just stopped worrying about it, she got pregnant.’”

17. “The worst thing people have said is implying that my energy created the infertility like through fear, emotional stress, emotional barriers, etc., and to simply get over it because we could adopt or do IVF or surrogacy without knowing the financial and emotional costs of our options.  They completely negate the emotional aspect of infertility and how it rocks your world as you know it.”

Grief in Black and White by Sarah Gough. Photography. Part of the ART of IF permanent collection.

Grief in Black and White by Sarah Gough. Photography. Part of the ART of IF permanent collection.

18. “I was told I was being dramatic. ”

19. “I cannot remember the comment exactly, but it was something along the lines that I should try to have a baby ‘at any cost.’ As if it wasn’t okay to be concerned about protecting my marriage, our finances, the health of my body, etc. I also recall someone saying, ‘I know you don’t want to talk about it, so I won’t ask you.’ That wasn’t true for me. It’s true for many women, but I did want to talk about it.”

20. “‘Maybe your husband is cheating on you and giving all of his good sperm to someone else.'”

21. “This isn’t a terrible thing to say by any means, but a very common question is: ‘Do you have kids?’ It’s a little uncomfortable. It’s a quick response, no we don’t. But so much comes behind saying those few words. People don’t know – is it because you didn’t want them? Because you tried and couldn’t? What is behind that statement? People don’t usually follow up and ask why not (not that they necessarily should). We’re still trying to figure out the best way to answer that question without the uncomfortable silence that follows.”

22. “‘Flip her over. It’s a whole new ball game.'”

23. “Complaining about how hard your pregnancy is. You get a baby in the end! It does not make me ‘feel better’ about never getting to experience pregnancy. I’ve been through far worse pain and misery, and I never received a miracle in exchange.”

24. “I think that some of the worst things actually came from my mom.  With the initial troubles, she’d repetatively tell me that she didn’t understand why I couldn’t get pregnant because my dad just had to look at her funny.  Gee, thanks mom for that image.”

25. “‘Drink a ton & enjoy some recreational drugs’ because that’s what worked for them.”

Helpful

1. “When I was going through my miscarriage my husband’s grandmother called me, and told me her story about her loss. We sat on the phone and cried together. She knew no words could help but she just wanted to be there. To share a story she didn’t share a whole lot made me feel supported.”

2. “Understand I’m doing the best I can with a total shit situation.”

3. “Be open to discussion and listening. Most days all I wanted or really needed was someone to listen and really HEAR me. I needed someone to say it was okay to be upset, it was okay to cry, I was grieving a major loss.”

4. “I found that telling people what I needed from them helped. Many times they were clueless as to how to help me. Just knowing I had someone there willing to hear me out whenever I need was amazing.”

5. “Say ‘I’m sorry you’re going through this.’”

6. “Ask me about it and about my losses…. Sometimes I would feel like my babies only mattered to me. It wasn’t until my sister wrote me a letter and told me that she felt their loss too that I truly felt like someone else cared about it. And that meant so much more than she probably ever will realize.”

7. “The best way my family and friends have supported me is to educate themselves so that they can at least understand the medical aspect of what is happening to me.”

8. “Be there when I need to talk or cry and on the opposite end of that, allow me the time I need to myself, to understand that I may not always be up to hanging out with them while they were pregnant… or with them and their children.”

9. “Our parents would stop asking us questions about doctor appointments and wait until we told them info. They didn’t want to bombard us with questions and they were respectful of our choices.”

10. “Just doing things to keep my mind off of what I was going through. Inviting me out to do things I enjoy, like getting spa treatments, going to sing karaoke, going to wine tastings, etc. Many people asked if they could pray for me and I really liked that.”

11. “My family: mom, sister and aunt all gave me the progesterone shots through both of my IVF cycles.”

Failed IVF #1 (September 10, 2015 - October 9, 2015) by Sara Nelson. Mixed media. Part of the ART of IF permanent collection.

Failed IVF #1 (September 10, 2015 – October 9, 2015) by Sara Nelson. Mixed media. Part of the ART of IF permanent collection.

12. “One of the most memorable ways people helped support us was fundraising for IVF. We set up one of those health donation websites and had a garage sale. Family members and friends had bake sales, everyone donated items for the garage sale, and even coworkers from family members helped out. It was really really humbling and brought us to tears once to see all the support we were getting.”

13. “The people who have shared their experiences of infertility with me have been extremely supportive.”

14. “Honoring my request that if I wanted to talk about it I would and not ask questions otherwise. When I needed someone to talk to and they really listened vs. trying to make me feel better or talking about their own fertility struggle.”

15. “Financial help was hugely important to me. I wouldn’t have opportunity to seek alternative therapy, like acupuncture, without help from my parents. To me, there are already so many costs of fertility treatments, and I was unwilling to try acupuncture because it was just another cost.”

16. “The best ways that our friends and family have supported us is just by listening and encouraging us. They are positive, but they are realistic in having the same expectations as us, which is hey, it might happen, it might not happen, but you have to give it a try.”

17. “They never tell us we should or could have done things differently, and instead point out to us that we are just one step closer to having a baby. You guys found out what doesn’t work; now you get to move onto the next thing.”

18. “Letting me cry. Taking me out to dinner. Letting me avoid baby showers and kids’ birthday parties with understanding and not exasperation or frustration. Giving me space to vent and grieve.”

19. “I have discovered some very special friends through this process.  They have best supported me by being present and listening, not judging or offering suggestions/opinions. They ask me what me what I need and strictly follow any guidelines that I set out. For example: I hate it when people offer solutions so I’ve asked my friends to never offer solutions.  The ones who listen warm my heart.”

Participants at the ART of IF Women Write the Body Workshop in East Lansing, MI.

Participants at the ART of IF Women Write the Body Workshop in East Lansing, MI.

20. “Help me to feel I’m still me even though I might feel a piece of me is broken.”

21. “When I would talk about the idea that there are many ways to be fertile, that bearing offspring is one way, but not the only way, and that fertility encompasses so much more – there were people who ‘got’ what I meant and people who didn’t. Those who ‘got it’ were excited for me and excited to see what other endeavors I might pursue in life. That made me feel supported.”

22. “Many friends have tried to support me just by asking what we need. Usually I tell them I just want to be allowed to hurt. The best friends I have are willing to let me hurt, are willing to sit through awkward silences and haven’t been hurt or offended when I’ve politely declined to attend their baby showers or their children’s birthdays (there are some, believe it or not, who take it personally and have made me feel bad about it).”

“Letting me cry. Taking me out to dinner. Letting me avoid baby showers and kids’ birthday parties with understanding and not exasperation or frustration. Giving me space to vent and grieve.”

23. “Please spare me any conversations about pregnancy, childbirth and breastfeeding. These situations make me incredibly uncomfortable and I’ll just find a chance to try and run away. It’s painful to hear these conversations, they tear at your heart. And if I know that you are aware of my situation & you bring up these topics in front of me, I feel even more hurt & isolated.”

24. “Do not complain to me how exhausting and hard it is raising your children. Nothing in life is easy that’s worth something. Think about how that sounds to someone who has been to hell & back trying to have children.”

25. “Really, I just wish people could think twice before they speak. Try for a minute to put yourself in our shoes. Be compassionate. If you have a friend or family member that can’t have children, don’t ignore them. Do tell them you are thinking of them. Do tell them you understand they’re going through a hard time. Do tell them you’re praying for them if that’s what you do. Just try to understand and be more sensitive.”

Nesting

As I wrote in a blog post not long ago, Maria and I recently had a conversation about how our homes have taken on a different purpose and meaning due to our infertility and living in them as families of two. It got us thinking about nesting, which inspired me to create some artwork around that theme. I made one piece, my “Inhospitable Nest” around the memory a dream I had years ago.

Choosing the materials for that piece and setting aside time to create it was very calming. Weaving the wire in and out was a meditative process and, while I don’t always end up with a product that looks like it did in my head, this one did. Better even. It made me want to create more nests. I’ve since created two more that I’m sharing with you today.

The first was created around a painful experience I had while my sister was visiting with her two youngest children. My four youngest nieces and nephews were having a sleepover at my parents’ house. My mother bought them all matching pajamas and they were wearing them, sitting in a row on my parents’ couch. I was overwhelmed with sadness. I knew that if my twins, conceived after our first embryo transfer, had survived, they would be sitting in the middle of the line up.

Cousins by Elizabeth Walker. Mixed media - copper and aluminum wire, coral, moss.

Cousins by Elizabeth Walker. Mixed media – copper wire, coral, moss.

 

The second was inspired by a conversation I had with my husband, Scott. We have pet Zebra Finches at home. The birds laid five eggs. One was kicked from the nest, one never hatched. However, three baby birds were growing well. Sadly, they died one by one, the last just days from being ready to leave the nest. Scott mentioned that we shouldn’t let them have babies anymore because it was a lot of work for them without the babies even surviving, to which I responded, “They did better than we ever did.”

Five years, five Clomid with timed intercourse cycles, four IUI hybrid cycles, one IVF cyle resulting in the transfer of three embryos and the furthest we ever got was an early miscarriage. Still, I’m grateful for that brief time I was pregnant.

Better Than We Ever Did by Elizabeth Walker. Mixed media - copper and aluminum wire, pearls.

Better Than We Ever Did by Elizabeth Walker. Mixed media – copper and aluminum wire, pearls.

 

 

3 Powerful Visualizations of Infertility

The name “The ART of Infertility” has a double meaning. The artwork, created by women struggling with infertility, and Assisted Reproductive Technologies, the medical treatments that help those struggling to become parents. It is also a play on the word “artifact” and the numerous medical objects that can accumulate from going through infertility. IF also has a double meaning. IF is the acronym for infertility. It is also a common word that infertility patients use as they live the limbo that infertility forces them into as their schedules are controlled by fertility treatments.

Today we feature some art that reimagines, reinterprets and repurposes some medical art-i-facts to tell part of their infertility story. When the exhibit travels, these are always some exhibit favorites. They are powerful and tell the truth – infertility hurts and infertility is hard. But going through infertility reminds you also of what matters, what is important, and what is inspiring. We hope a few of these pieces will leave you inspired.

“Letting Go.” This mixed media piece created by Denise is made from ceramic, glass vials, gauze, q-caps and glue. It tells the story of how she now feels like she is trying to put together the pieces of her life that have been shattered because of infertility. The materials used to make this installation are from previous failed fertility treatments.

“Letting Go” by Denise Callen.

Denise explains “Letting Go” as: From childhood,, we are brought up to believe in a traditional fairytale of how our lives will unfold: meet the handsome prince who steals the fair maiden’s heart, marry and have a beautiful family. It can be a rude awakening when life veers from that path. Every plan I made revolved around this traditional view of how life was to play out. I married a wonderful man; we bought the perfect house with room for the traditional 2.5 children, and then the dream took us down a very dark path we never anticipated. Years of trying, expensive treatments over and over and over and over again, took their toll. Just when we would get good news, our hopes would be dashed with miscarriages and no heartbeats. I reached a point when it was time to stop crying, injecting, treatment and pouring money into a dream that wasn’t to be. I needed to let go of the fantasy and find a new dream. I am now putting the pieces of my life together. Like this work, it is still beautiful and holds parts of the past, but it is very different from the original plan. No matter how hard I try to patch it together, it, and I, will never be the same. I am stronger. I am wiser. I am happy. I am sad. I am living child-free.

Failed IVF #1 (September 10, 2015 - October 9, 2015) by Sara Nelson. Mixed media. Part of the ART of IF permanent collection.

Failed IVF #1 (September 10, 2015 – October 9, 2015) by Sara Nelson.

Sara explains “Failed IVF#1 (September 10, 2015-October 9, 2015)” as: I often use my own body in my images. Molding it and adhering it to my canvas. Creating forms that are not perfect yet are perfect in their own right. In “Failed IVF#1 (September 10, 2015-October 9, 2015)”, I strive to bring the viewer into the overwhelming world that is infertility at its most extreme, the process of in vitro fertilization. It is an insanely overwhelming process, full of medications, needles, doctor visit, surgeries, extremely high highs, and often extremely devastatingly low lows. In this piece, I have used the needles I used throughout my entire IVF treatment. I have pierced them back into a cast of my own body; in the locations I put the initial injections, day in, day out, day in, day out, hoping to help my doctor to create a perfect, viable embryo to become my child. Unfortunately, the process resulted only in the picture you see; one tiny dot of an embryo that was probably not healthy, and did not make it to become a viable human being. I am still grieving that loss and that failure. After finishing the piece, with the help of my amazing and wonderful husband, I could not help but think, I have to do this again. I have to try again. I am not ready to give up. I WILL have an IVF#2, however emotionally and financially draining it is. Hopefully this will end in success.

“Infertility Armour" (Elizabeth Walker, artist). Amber and pearls are my go-to gems. While I was trying to conceive, I developed some superstitions. One was that I had to wear amber every day or it may change my energy and decrease my chances of getting pregnant. This was unusual for me because I strongly put my faith in science. However, while undergoing treatment for my infertility, science was letting me down.

“Infertility Armour” by Elizabeth Walker.

Elizabeth explains “Infertility Armour” as: Amber and pearls are my go-to gems. While I was trying to conceive, I developed some superstitions. One was that I had to wear amber every day or it may change my energy and decrease my chances of getting pregnant. This was unusual for me because I strongly put my faith in science. However, while undergoing treatment for my infertility, science was letting me down. I created this piece of infertility armorusing needles and syringes identical to the ones my husband used to give me progesterone in oil shots. The shots were one of the things I feared most about IVF but it turned out they weren’t as horrible as I imagined they might be. The amber, while a fashion staple for me, is also a nod to the amber teething necklaces for babies that became popular while I was trying to get pregnant. I felt slighted because amber was MY stone and everyone else was buying it for their babies when I couldn’t have one. The pearls are also the bead that I assigned to progesterone shots in previous projects. When cycling, progesterone keeps your uterine lining in check for your embryo to be able to implant and grow. I imagined this like the lining of mother of pearl inside a shell, or the protective layer that oysters form around a foreign object which becomes a pearl.