Tag Archives: MRKH

finding my brave (83/99)

When I was preparing for Listen to Your Mother Pittsburgh, I knew I wanted to wear a specific bracelet during the actual show.

Mothers Day 2015 - Be Brave

You see, almost exactly one year before, I decided to buy myself a Bravelet for Mother’s Day to support the Beautiful You MRKH Foundation which is a very important organization to me.   That Mother’s Day was also the 30th anniversary of my MRKH diagnosis, so the Bravelet had special meaning.  Putting sentiment aside for practically, however, the Bravelet is a little dangle-y, so I got into the habit of taking it off whenever I was typing on my laptop.

Which, you know, is rather often.

Well, of course it got lost — and in the weeks leading up to the Listen to Your Mother show, I searched and searched for it, with no luck.  And then the day of the show came and still no Bravelet.  The show, of course, went tremendously and everyone was so beautiful, so radiant, so supportive, and yes — so absolutely perfectly brave.  (You’ve watched it on YouTube, right? My story and the stories of everyone else who rocked the hell out of that stage?)

I’ve said this before: being in Listen to Your Mother is one of my most significant and personally meaningful accomplishments and it will remain that way for me forever.   And while it would have been nice to wear the Bravelet, I didn’t need it to be brave.  And I knew this, of course, but … well, sometimes when you’re telling the most personal story of your life to 500 people and having it recorded for all time on YouTube, it helps to have a little talisman of sorts.

So, more than three months have passed since the show and I had pretty much forgotten about the lost Bravelet.

Until tonight.

I happened to reach over to the end table next to where I sit because I thought a box of over-the-counter medication was the Advil Cold and Sinus I tend to take when the weather sends me into sinus hell, as has been the case for the last several days.  I lifted the box up and there, underneath, there it was! My missing Bravelet!

It had been right next to me this whole time, within an arm’s reach (if that).  And I can’t help but notice the inherent meaning in this and how significant it is that I found this now because it’s so obvious.

How often do we find ourselves searching for something we think is missing when what we’re looking for is actually so much closer than we realize?  When we think that we’ll never be able to find the answers, the solution, the magic charm that makes everything better? 

Our strength and our bravery is always with us, closer than we think, even when it seems hidden.  Especially when it seems hidden.

Somehow, the hardest things to see are the things that are right in front of us.

99 Days of Summer BloggingThis is post #83 of 99 in my 99 Days of Summer Blogging project. 

P.S. This isn’t a sponsored post for Bravelets, but if you’re inclined to purchase one for yourself and you aren’t sure what charity to select to receive the percentage of your purchase, I know the leadership of the Beautiful You MRKH Foundation personally and I also know how important the work and advocacy of this small organization is to so many women, including myself.

 

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afterglow

LTYM - Poster

LTYM poster at the entrance, as the audience arrived. 

LTYM - Ready, Set ...

Our words, waiting to be released into the world.

LTYM - Roses and quoteTwo dozen roses from The Husband (a.k.a. as my perfect guy) along with a lovely gift from the LTYM producers  ~ a framed quote from my essay, about love and differences and acceptance.
The meaning behind this at this particular time defies words right now. 


“What would happen if one woman told the truth about her life? The world would split open.” 
~ Muriel Rukeyser, “Käthe Kollwitz” 


Sometimes in this life, you have the kind of experience when you can physically feel yourself being transformed.

When your heart becomes lighter while simultaneously overflowing, spilling over the brim.

When your perspective and understanding becomes a kaleidoscope, shifting your view of yourself and your world.

When you can almost see your words in the air, and you take a leap and ride.

All of that and so much more was Listen to Your Mother Pittsburgh 2016.

So much more. 


On Friday night, I stood on a stage and told more than 400 people the most personal story of my life.

I told them I was born without a uterus.

I told them I didn’t get my period.

I told them this is called Mayer Rokitansky Kuster Hauser syndrome.

Here’s where I’d expected to write “and the room got completely quiet and still.” That’s not what happened.

Some people laughed.

They laughed.

Mind you, it wasn’t in a mean way, but nervously. Like when you laugh at an inappropriate time.

Onstage, I heard those laughs and for a moment I was terrified.

I thought, holy shit, what the fuck have I done?

And then I did the only thing I could do.


I told them how it felt, back then.

I told them about being 1 in 5,000 women with MRKH.

I told them about the shock, the tears, the denial, the wishing-away, the feelings of being like a freak, the hopelessness.

I told them all of this and how I thought all the plans I had for my life were over. I told them how I thought I was given MRKH because I would be a crappy mom and that maybe I was better off.

I told them about meeting someone who saw me for who I am. I told them about acceptance and being different and being loved despite those differences and the challenges that would lie ahead.

I told them about those challenges, about chemical pregnancies and depths of sadness.

I told them about the power and mystery of the science and faith that makes it possible to turn a handful of cells into two teenagers.

I told them this and the room got very, very still and quiet.

(Except for the knocking of my knees, which started about mid-way through my talk and which I was convinced could be heard echoing off the walls.)

I told them all this because Friday will be exactly 31 years since I learned I have MRKH and that’s a really long time to stay silent.

I told them this because I want — no, because I need — women and girls like the one in India who took her life because she couldn’t see a future post-MRKH to know she is seen and respected and loved.


After the show, many people came up to me, thanking me and letting me know of their similar journeys. A few moments before the show, our producers gathered our incredible, amazing cast together in the “green room” and told us that there would be someone out there who needed our words, our story.

Who needed to feel heard and to be seen.


Nearly 48 hours later, I am still running on the electricity that surged through the Lecture Hall on Friday night, powered by the incredible women onstage with me and the generosity and compassion from everyone in the audience. I’m so grateful for those who were part of this and the support from so many people in my life, here in Pittsburgh and those far away.

You know who you are. You know what you did to give me the courage and strength to do this.

You know.

When I say that Listen to Your Mother Pittsburgh was — and is — a significant life event for me, I mean it like this:

I was one person before getting on that stage and a very different person after.

This isn’t hyperbole.  This is right up there with seeing our children for the first time and marrying The Husband.

It is a defining, specific moment. A life event in every sense.

There’s so much I still need to reflect, process, and write about from this experience.

So much more.

This is just the beginning.

LTYM Cast - Final Bow (2)

 

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Book Review: None of the Above, by I.W. Gregorio

None of the Above

None of the Above, by I.W. Gregorio
Balzer + Bray
2015
352 pages

One of the many things that I love and greatly appreciate about today’s young adult (YA) fiction is how beautifully it explores the multi-faceted and deepest layers of our ever-changing, often messy, intricately complex world. I say “our” because the world of today’s tweens and teens is, increasingly, the world of adults.

Reading YA is the ultimate reality show. I mean that in the very best way, because what’s being written for this audience – one that includes a notable percentage of adults, myself among them – is nothing short of groundbreaking. It is one of the reasons why I keep on keeping on with my own YA novel because there is no better time to tell the stories that I think today’s young people (and many adults) desperately need.

With None of the Above, debut novelist I.W. Gregorio is a writer (as well as a mother and a surgeon) who has given her readers such a story, one that explores identity and acceptance through the perspective of a main character who, within the first 35 pages of the book, has just learned she was born intersex. (A definition, from I.W. Gregorio’s intersex resource page on her website: a biological condition in which people are born with bodies that don’t fit neatly into our understanding of what is male or female, whether it be because of their chromosomal sex, or because of their internal or external genitalia.)

In None of the Above, Kristin Lattimer is a high school senior who appears to have everything: the perfect boyfriend; two BFFs; a Homecoming Queen title, and an athletic scholarship. Raised by her father since her mother’s death six years earlier from cervical cancer, Kristin and her dad have arrived at that “new normal” where they’ve processed and accepted their loss but not without twinges of memories imprinting their everyday routines.

At 18, Kristin’s relationship with Sam is a consensual one with realistic, thoughtful decision-making about sex. And it is that decision which leads Kristin to a doctor’s appointment and an examination where she learns that she is intersex, a person born with both male and female characteristics. The novel focuses on her external struggle – after only telling her most trusted friends about her diagnosis, the entire school quickly finds out and the backlash is swift, laced with ignorance and cruelty.

None of the Above focuses heavily on Kristin’s emotional conflict, too. While processing the stigma associated with being intersex and others’ insensitivity, she struggles with identifying herself by the sum of her parts – no uterus, a short vagina, internal gonads – and finding the strength within to move forward with the support of caring people in her life and those qualities that shape who she is as a person.

“Hurdlers were a breed of their own. When Coach Auerbach talked about the hurdles, she cautioned us that the event wasn’t for the faint of heart. ‘Hurdling has the steepest learning curve, and probably the most painful. It’s all about technique, so there’s a ton of practice involved. A lot of hitting your knees and face-planting. They say that hurdlers need three things: speed, flexibility, and courage. 

Within the first day of learning how to hurdle, I knew she was right to warn us. I looked at my sprinter friends and was totally jealous of how easy they seemed to have it. But at the same time, I loved being hard-core. That’s who I was: a hurdler. And hurdlers were never afraid to fail.” (pg. 243)

This is a story that I connected with the minute I heard about this book, well before I turned the first page. As a woman diagnosed with Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH) at 16, I walked a very similar path as Kristin, minus the athleticism and Homecoming nomination and – thankfully, miraculously, gratefully – without the social ostracization and bullying that Kristin experiences in None of the Above. And while there are differences with MRKH and AIS, there are more than enough “yep, me too, been-there-done-that” connections and experiences to make None of the Above resonate with me on a deeply personal level.

“But once you understood what you were … how could someone not want to be fixed? I couldn’t conceive of a world in which I wasn’t broken.” (pg. 146)

This is one of those books that I appreciate tremendously for the sensitive way the author handles a subject matter that’s considered by some to be taboo. Books like None of the Above are desperately needed, and as a founding member and supporter of the #WeNeedDiverseBooks campaign, I.W. Gregorio truly understands this.

Because of books like None of the Above and authors like I.W. Gregorio, there exists the hope for a more caring, sensitive, and accepting world.

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The Sum of My Parts

Mothers Day 2015 - Be Brave

We live – yes, we do – in a reality show culture. One that demands, seduces, cajoles us into telling our secrets for the world’s consumption and criticism.

There’s a vulnerability in doing this, absolutely. Sometimes the entire story is not ours to tell; sometimes people are still alive or too young to understand; sometimes the words of those we once loved haunt us (sometimes you tell people too much, Melissa; you need to learn sometimes you don’t need to share everything with the world); sometimes dusty contracts and unspoken agreements make us hesitant.

We know all this, we live with all this, and so it is often too easy to stay silent, to not hit publish, to go quietly about our lives, albeit with a reminder here and there: a medical professional who asks a common question, the colleague who is just making conversation about do you have kids, that gaggle of moms in the playgroup who relish in rehashing pregnancy details you know nothing about. Even those instances don’t bother you anymore because you’ve learned how to smile and adopt a version of the truth. It’s not that we forget, but rather it’s more of a feeling that we’ve put that away. We’ve dealt with that; we’ve gotten the therapy; we’ve moved emotionally to a much brighter place which – hell, look at that – might even feel like something called …

Acceptance.

Until you read the words from someone who sounds like you, way back then, in May 1985 and in the days, months, years, decades after. Someone probably much younger than you and most likely a teen who is just finding out, who is questioning, struggling, hurting like hell. You’ve lived what she is living because you, like her, are also 1 in 5,000 women with this (MRKH, an abbreviation for Mayer-Rokitansky-Kuster-Hauser Syndrome) and without that (a uterus). You have something to offer, a perspective to share, a glimpse of a life that – I promise you, girlfriend, I pinky-swear to you – is not defined by one missing part.

Because we are not the sum of our parts.

This thing that looks like acceptance has not come to me easily or overnight, because as we all know, acceptance rarely shows up gift-wrapped at the door. For most of us, it is the sum of many things.

Experiences.

People.

Time.

It is true that I am not a numbers person except for dates.  I remember so many of them, and those tend to be the ones I respect and honor and measure the distance between here and there. They are mile markers, rest stops on this journey of life which leads me to reflections and blog posts like this one that beg the question of what I’m called to do with this, what it all means, where it will lead.

Sharing this through the writing – a memoir that says what you need to say and also protects others, perhaps? – is something that feels possible (there’s even a working title) yet there’s a holding back perhaps for reasons I don’t know or understand. It is scary as hell and it is easy to tell yourself to wait for the right publication, the perfect time, to listen to the ghosts – sometimes you tell people too much, Melissa; you need to learn sometimes you don’t need to share everything with the world – to live in the what-if’s and the maybes instead of the hell, yes. There’s a sense of not wanting to give it all away at once and certainly not for free; yet at the same time, I believe we are given what we have to help others and to connect amidst the risks that will always be there and the internal chorus of what will they think. This business of life is too damn short, and the timing will never, ever seem right. We would not be here, would not have what we have – these kids, this strength, each other – if others did not take a risk and do exactly that.

I believe in having no regrets, in living out loud, and celebrating our truth. Some days that is easier than others, but it is in the doing that gives us our power, adding up piece by piece to reveal our greatest strengths.

Photo above is of a Bravelet, my Mother’s Day 2015 gift to myself and which benefits the amazing work of the Beautiful You MRKH Foundation.

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