Tag Archives: Beautiful You MRKH Foundation

For Our Friend Meredith, On Her 37th Birthday

“What would happen if one woman told the truth about her life?
The world would split open.” 

~ Muriel Rukeyser (“Käthe Kollwitz”) 

We have seen, through two hashtagged words and on a most unprecedented national level, the power that can emerge when secrets are shattered and the most personal of stories are shared. There is something inherently fortifying about connecting with someone else who has experienced your same hurt, understands the depths of your pain, and has excavated the same emotional mines. What was once kept hidden for years — perhaps decades — becomes unveiled; in the light, one’s shame has the potential to become transformed into one’s greatest strength because of the love and presence of others.

My friend Meredith Brookes grasped this knowledge in a way that resonated with other women like herself — and like me — who have Mayer Rokitansky Kuster Hauser (MRKH) syndrome.  MRKH is a congenital condition (which means it is present at birth) that results from the “incomplete development of the female reproductive tract. Women with MRKH have fully functional ovaries [and] are genetically female [with] two X chromosomes and a normal chromosome analysis (i.e. 46, XX). Typically, women with MRKH lack a fully functional uterus, cervix and upper vaginal canal.” (source: https://www.beautifulyoumrkh.org/medical-information.html) MRKH occurs in approximately 1 out of 4,000 or 5,000 women, most of whom are diagnosed in their teenage years when they don’t start their period. Such was the case with me.

It’s only been very recently that I’ve become comfortable discussing my MRKH experiences publicly. (And when I finally did, it was onstage in front of 500 strangers — the exceptions being The Husband, The Kids and a few coworkers, including my boss — while being YouTubed for good measure.) Before then, though, there were decades of feeling ashamed, embarrassed, stigmatized and feeling like a freak.

I’m pretty certain I would not have ever spoken about this had it not been for several other women with MRKH who inspired me by their own courage and boldness.

One of those women was Meredith Brookes.

Meredith’s MRKH story was a little different; diagnosed at age 3, she once commented that she never knew a time when she didn’t have MRKH. It was always part of who she was. And the person she was … well, Meredith was someone who was an inspiring, tireless champion and strong advocate of every person with MRKH. She co-founded an organization to promote the emotional and physical well-being of women with MRKH in the Mid-Atlantic region by strengthening ties between affected women and their families, and helping women learn to embrace the identity of being an MRKH woman.

That’s how I got to know Meredith. In addition to our shared MRKH experience, we were also from the same general area. I grew up in suburban Philadelphia and Meredith was a Jersey girl across the river, in Haddonfield … yet we wouldn’t meet in person until a Mid-Atlantic MRKH gathering here in Pittsburgh.

When we first connected, I thought she was closer to my age and was surprised to learn she  was only in her early 30s. Meredith had a maturity and self-assuredness that was well beyond her years. She was the kind of person who listened intently and compassionately, making you feel like your story and your experience was the only thing that mattered to her. You felt seen. Heard. Held. You instantly thought of her as a close friend.

Meredith became that friend to so many of us in the MRKH community. Because of her leadership with the Mid-Atlantic group, often she was the first person with MRKH that another woman with the same condition had met. Think about that for a moment: you spend your whole life feeling ashamed of and defined by a little-known condition that happened to you in utero, one that befuddles doctors and makes the majority of them treat you like a lab specimen, and never meeting anyone else who understands on every level what this is like … until you do.

Meredith would have turned 37 yesterday. Instead of flooding her Facebook page with birthday messages, we are mourning her loss. On a Sunday morning in October, I was reading the Philadelphia Inquirer online when I turned to the obituaries. To my utter shock, there was Meredith’s name and photo, along with the news that  she had passed away unexpectedly after a brief illness. We had no idea.

In the weeks since, I’ve thought a lot about my friend. Meredith was someone who dedicated her life to raising awareness of MRKH and who was driven to do everything she could to raise the esteem and self-worth of every woman with this condition. Despite her short time here, she accomplished that while making it her passion. She traveled extensively, connecting with specialists and researchers and professionals in this field. Less than two weeks before she died she was at a Rare Disease Conference. She brought and bringing these experts to us. In June 2016, I spent an extraordinary day at an MRKH conference in Philadelphia organized by Meredith and others. I was struck that several of Meredith’s family members — her mother, sister and aunt — all participated as volunteers, giving their time and expertise to an effort that meant everything to their loved one. They were (as they should continue to be) immensely proud of her — and she, too, had pride in the community she helped create, the friendships she nurtured and the young women she supported with her compassion and knowledge.

Meredith’s legacy is now ours, for it is an extraordinary person who can give the gift of true acceptance and understanding to another. She showed us how to give that gift to ourselves, first and foremost, so that we can continue to do her much loved work with her spirit and love always in our hearts.

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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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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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sunday salon: a laid-back, do-it-yourself kind of mother’s day

 

Mothers Day 2015

Mothering:
Today is a low-key, very laid back kind of Mother’s Day. Hardly recognizable from any other Sunday, actually, which is fine with me.  Both of our mothers have been called, the requisite Facebook sentiments have been posted, and …that’s about it. I’m perfectly fine with Mother’s Day being an ordinary Sunday as it wasn’t that long ago (and yet, a lifetime ago) when this was a much more bittersweet holiday. Compared to that, I’ll take average and ordinary any day.

Still, I did take advantage of the occasion to purchase some gifts for myself.

Mothers Day 2015

 

(Why yes, you observant thang, there is a missing bottle of wine in the Barefoot Merlot four-pack. That’s because it was purchased and consumed on Friday night.)

And this arrived in Friday’s mail:

Mothers Day 2015 - Be BraveI wanted a Bravelet for various reasons, namely as a motivator and inspiration for writing about some things that I feel compelled to write more about, but at times struggle with. It’s also a reminder of times I’ve needed to be brave, because sometimes we tend to forget the hard stuff we’ve been through when the here and now shows up.  Finally, and most importantly, it’s a way for me to support the phenomenal work of the Beautiful You MRKH Foundation, an organization that is very personal to me.  ($10 from each Bravelet goes to a cause of your choosing, such as BYMRKH.)

Writing
Along with 1,600 other hopefuls, I applied to be a Book Riot contributor. Alas, it wasn’t meant to be, but I’m okay with that. (Here’s the funny thing about starting to send more stuff out into the world: in some ways, the rejection gets a little bit easier. There’s no shortage of places to submit to. If you’re not right for one gig or the piece isn’t right for one publication, there will be another coming along.)

This week, one of those places was The Philadelphia Review of Books. Poetry editor John Ebersole put out a call for political poems and stated he would publish them on the spot.  I had been thinking about hearing Desmond Tutu speak five years ago in Baltimore and the recent riots. The result was “Baltimore, April 2010” which appeared on The Philadelphia Review of Books’ blog along with more than 100 other poetry submissions. Go read them, as these folks are some fantastic company.

Listening

Salt Sugar FatIn the car, I’m still listening to Salt, Sugar, Fat: How the Food Giants Hooked Us by Michael Moss. It’s fascinating and sobering to learn the marketing and product development strategies behind some of the best-known brands. Scott Brick narrates the audio of this, and I just love him.

Reading

In the Unlikely Event

Last night I started the soon-to-be-released (June 2) Judy Blume novel, In the Unlikely Event, which I’m reviewing for the Post-Gazette. Here’s what I can say about this, as of page 31: this is definitely going to appeal to those of us of a certain age who grew up reading Judy’s books. We’ll see if that continues to hold true throughout, but trust me when I say that the nostalgia factor is strong with this one.

For those who celebrate this day and embrace all that it is, for those who look at this Sunday as just another day, and for those who, understandably, find Mother’s Day difficult for any myriad of reasons, know this: today and every day, you are and always will forever be mom enough, no matter what. Happy Mother’s Day.

 

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