Do You Live A Taboo? I Do, Too!

UPDATE 8/27/2013: For those of you around the world who are unable to join us in person in New York City, we’ve opened up a page on our event website to share your thoughts. Please comment below and we’ll include you as virtual participants.

…when a path wasn’t clear, the natural instinct was to go with the herd. Only trouble was finding the right one. I was slowly separating from the ‘Trying to Conceive Tribe’ and from the looks of it I wasn’t ever going to be part of the ‘Mother Tribe’ – the working mother or the stay-at-home mother set. The schism between the two camps was now so whatever. I didn’t even fit into the ‘Childfree by Choice Tribe.’ I learned a new term. I was ‘involuntarily childless.’ How the hell was I going to locate that motley crew?”

That passage from my Silent Sorority manuscript, written some seven years ago, became something of a sociological and personal challenge. I knew I could not possibly be alone in my infertility experience so I set out on an oftentimes lonely wandering in search of my people.

Little did I know then that my journey would take me to New York City on September 27, 2013 to stand on a stage at the BMCC Tribeca Performing Arts Center to take part in an unprecedented public forum called The Cycle: Living A Taboo.

How did this possibly come about? Rewind to 2007 and a time when I began to blog anonymously — anxiously sending out pings. Then, I ventured out, sheepishly, in public gatherings like a BlogHer meetup. Slowly, painfully, I revealed more of myself and my taboo black sheep infertility experience.

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Those who never visited a reproductive endocrinologist usually responded to my truth telling with awkward discomfort, all but pleading for a subject change. Most all who were diagnosed with infertility and actively in search of motherhood (as I once was) feared becoming me.

And, then, almost like stars appearing in the dusk sky, I began to find my people. And soon there were constellations. Beautiful, bright and dazzling heavenly bodies appearing out of the darkness. Soon we became a network — from Australia, Slovenia, Michigan, England, New Zealand, Ireland, San Francisco, Israel, Canada, Rhode Island, South Africa, Ohio, Southern California, Boston, Seattle, New York City and many other places around the world.

There is something indescribably delicious in knowing that you’re among people who simply “get” you. No apologies, no explanations, no etiquette instructions. You can complete each others sentences. There’s healing and peace that comes with knowing you’re not alone as one of the “involuntarily childless” or an infertility survivor.  Best of all, you don’t have those moments of sheer frustration that accompany feeling misunderstood, or worse, pitied or judged.

Many times I’ve been tempted to retreat back into my private world and let society at large live on in blissful ignorance believing the fairy tales that popular media cheerfully, breathlessly share on glowing magazine covers and talk shows: “hey gather ’round y’all for another installment of the tightly controlled fertility industry narrative that treatments will always result in a bouncing, healthy baby.”

And I remember how badly I needed to know that there was more than one ending to the infertility story — that I wasn’t a freak. I know how hard it is to be in the silent majority. That’s what led me, documentary filmmaker Irina Vodar and Dr. Marni Rosner to hatch a grand plan…

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What: The first independent public forum, The Cycle: Living A Taboo, is designed to honor and explore the hidden ramifications and bioethical considerations of infertility, assisted reproductive technologies and childlessness on individuals and society.

Why: While the global fertility industry heralds the birth of millions of babies born via in-vitro fertilization (I.V.F.) since 1978, The Cycle will acknowledge and bear witness to the long-term emotional tolls, traumas and risks associated with the millions more cycles that have resulted in failure over the last 35 years: 77 percent global failure rate in 2012 and nearly 70 percent in the United States in 2010.

Our Forum aims to ensure that future generations of women and men confronting infertility will have the benefit of improved social and emotional supports, and greater access to transparent, accurate information about reproductive technologies and their social impact, and treatment outcomes, risks and costs. We’ve learned that public acknowledgement of the associated loss and trauma is beneficial to processing the grief and healing for those who’ve experienced infertility.

How: Our event will include intentional conversations about stigma, hype vs. hope, and trading losses in for life. This transformative 90-minute program aims to challenge conventional wisdom and foster a new, more open dialogue about infertility. The centerpiece of the Forum will be a remarkable series of personal stories that reflect a gamut of emotions and insights and give voice to what has been a profoundly misunderstood human experience, expressed intellectually and creatively.

Who: You and … this event is open to all particularly those facing a diagnosis of infertility, those who have gone through fertility treatments—whether they succeeded or not and those who have adopted children. We invite friends and family members of people coping with childlessness to attend, and those whose loved ones are not parents after infertility. Also welcome are fertility doctors and nurses, representatives from the mental health community, including social workers, psychologists, and psychiatrists, and members of the media who want to improve how they report on issues linked to this complex health condition.

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We hope you will both join us and help in promoting this historic event. Tweets and your blog posts about this event are very welcome! The list of those supporting our efforts range from Our Bodies Ourselves to The Seleni Insitute.

Tickets for this all-volunteer effort went on sale last Friday. More details on the speakers, including Tracey Cleantis and Miriam Zoll, in upcoming blog posts.

If you can’t be there in person we welcome donations to help offset the costs of renting the theater (NYC is expensive!). Details on how you can contribute are here and on my sidebar. Contact me if you’d like to learn more ptsigdinos @ yahoo dot com.

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24 thoughts on “Do You Live A Taboo? I Do, Too!

  1. Thank you for talking about the ramifications of infertility. People don’t want to see this loss from the side of someone healing after fertility. I’m sure I’m frightening but isn’t it better to be informed. Society is misleading to so many people who will suffer so much before they ever have a baby (if they ever have a baby)? My husband is taking a psychology course where he had to get up in front of a bunch of young kids and tell them the impact infertility had on him (these are a bunch of people looking to become therapists) and the response was awkwardness. Now one knows how to handle baby loss of any kind unless there is a happy ending.

    1. Thanks, Rachel, for sharing this story. It underscores the magnitude of the challenge around this topic. I’m sure your husband did a great job. Every voice makes a difference!

    2. IrisD

      Some of those kids might end up in the same shoes, or being close to someone who will also suffer from infertility. This isn’t the type of thing most people can relate to when you are in your teens/early 20s. But, somewhere down the road, they will remember his words and those words will make a difference. I’m glad he had the courage to do it!

  2. I just posted the link in my FB page. Wish I could attend, but alas we live so far away, but I applaud you all for having provided the forum as well as the event and for the movie as well.

    I can totally relate to the feelings of wanting to find a tribe. After we decided to surrender to life without kids, I felt like I needed to hear what others who had gone before me had to say about their lives. :-) I’m SO SO SO thankful to have found people like you. SALUTE!!!

    1. Wish you could join us, Amel. Thanks for the encouragement!

  3. Wishing you HUGE success with this event, Pamela! :) I won’t be able to be there :p but I will add a plug on my blog in the next day or so. And will look forward to hearing all about it afterward!

    1. Many thanks, Loribeth! We want to draw as many people as the venue can hold…

  4. Debbie

    Pamela,

    Much success in such a wonderful event. I wish I could attend but will not be able to make it. Do you know if the event will be video taped and if you would be able to purchase an online stream of the event?

    I’m really excited to hear about how this event went.

    Good Luck.
    Debbie

    1. Thanks, Debbie! It will be filmed for Irina’s documentary so when that is completed a portion of it will be available, but perhaps we can get a shortened version of some event highlights uploaded in October/November. I know the editing will take time — we’re an all-volunteer crew working on this when we’re away from our day jobs. Stay tuned!

  5. This sounds like a wonderful event! I live on the other side of the country and will not be able to attend. I like that you are going to point out the true statistics on TX. Can you do the same for adoption? I know so many of the women I have connected with had failed adoptions at some point in their journey, though most of them have gone on to become parents through adoption. I look forward to seeing the highlights!

    Jen

  6. Megan

    Good luck and much success, I am very much looking forward to the documentary and the feedback from the event. You hit on some great points above! Thanks!

  7. I wish I lived on another side of the Atlantic!
    Thank you for the link… I will follow the event online… I am looking forward to it!

    Yes, it is lovely to find your own network. I would be lost without it.

    kind regards from Europe.

  8. This is a wonderful event. I admire you for your commitment to exploring and promoting this issue. I am in the process now of needing to come to terms with the prospects of living child free not by choice after years of fertility treatments. Your blog is a wealth of thought provoking information. Thank you.
    xx

  9. Mrs. McIrish

    I’m going to do my best to come!!

  10. I won’t be able to make it, but I will be consuming any video available. My little blog is my only contribution to Web 2.0, but I will spread the word there, and tell some folks IRL who are off the IF grid otherwise. Well, if I know any any more. May have to think about that!

  11. Life Without Baby

    Pamela,
    This conversation is long overdue and it couldn’t be in safer hands than yours.

    Thank you for having the courage to pull back the curtain and start talking about what it really means to deal with infertility, especially when it doesn’t include the marketing brochure happy ending.
    -x-

  12. Sorely behind on commenting and spreading the word about this event, but better late than never right? ;) Very excited to see this discussion and incredibly grateful that it is being organized by you and other leaders in this community. My hope is that by talking about the emotional aspects of living with infertility/loss openly, not only do we change the discussion but also encourage those living in silence to begin sharing their stories. Thank for organizing this Pamela. May the turnout be amazing.

  13. Talking About Not Having Children - Life Without Baby

    […] The wonderful Pamela Mahoney Tsigdinos is one of the women behind this event and, if you can’t make it in person, you can add your voice virtually at her site, Silent Sorority. […]

  14. Sorry, I’m really late to this. But I wanted to wish you and the organisers and speakers all the best for this event. Little by little, I hope we are chipping away at the stone wall that seems to be erected between the infertile and the fertile, a wall cutting us off from inclusion, understanding, and empathy. And I am sure this event will help lead the way.

  15. Kathleen Guthrie Woods

    This is fantastic! Spreading the word through Facebook and my network.

  16. Laura Scott

    Thanks for your work on the forum. I am a reproductive decision-making coach and unfortunately I can’t be there as I am facilitating a program in Tampa that day, However, I will post a link to the forum on my blog at http://www.180coaching.com. It is wonderful to hear about this film!

  17. PNG

    Good luck with the event, it sounds wonderful! <3

    Regards from Helsinki!

  18. Barbie Zamoiski

    Pamela! What a long way we have come!!! I am so proud of you and really wish I could attend the event in NYC! I will still be out of town…I really would love to join in virtually if possible!
    Please know what a point of strength you are in this mixed up venture and how fortunate the attendees are to have you!
    I am so happy for you and am really looking forward to what lies ahead!!
    Cheers!
    Barbie

  19. Rachel

    I am nearing the end of my struggle with infertility. After two years, IVF where my own eggs failed to fertilize, and cycles with two different egg and sperm donors resulting in 7 transfers of 12 excellent embryos that have resulted in 6 negatives and one positive where my beta never went above 10, I am looking at my last transfer of my last 2 embryos. I am so grateful to have found this event as I begin to wonder where I will wind up and where I find others who are “childfree” after putting in more than they knew they had in the persuit of being a parent. I wish I could attend, but I am just far enough that I cannot miss another day of work when I have another transfer looming. But thank you, thank you, thank you for opening this conversation to a wider audience. Whether I come out winning the lottery or empty-handed, I salute this important work and will continue to listen to others and do my best to make sure all of our voices are heard.

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