“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.