I’ve been fairly open about my struggles with Turner Syndrome over the years (you can read my story here), but it still amazes me to see Turner Syndrome – along with certain aspects of myself – depicted in popular culture.  Lately, I’ve been thinking about how those representations influence perception and so much more.  Both well-known depictions of Turner Syndrome, one a “victim” in the Law and Order:  Special Victims Unit titled “Clock” (hint:  turns out she isn’t a victim at all) and the other, Gwen, the protagonist in the popular novel The Condition by Jennifer Haigh, have issues and inaccuracies, and yet, there are certain truths that shine through.  Personally, I have yet to meet a woman or girl with Turner Syndrome who isn’t as stubborn as we are portrayed in popular culture.  It is quite simple, actually:  We have to be.

Even though these images of women and girls with Turner Syndrome, along with their accuracy (or lack thereof), have been analyzed to death in the Turner Syndrome community, that isn’t my intention here.  No.  My intention is to describe my experience of seeing aspects of myself in relation to Turner Syndrome in Gwen in The Condition.  I am discussing my experiences only.

Frankly, while I enjoyed The Condition, it isn’t a book that I would necessarily reread in its entirety.  Yet, there are scenes, plots, and subplots in which I couldn’t help but see myself mirrored in Gwen – not as a woman, but as a woman with Turner Syndrome.  It is those pieces and depictions that have stayed with me for well over a decade at this point.  There are several things Gwen is faced with in the novel that most women will, fortunately, never have to face.

The opening scene still takes my breath away.  In it, Gwen’s father, who later becomes almost obsessed with the fact that she has Turner Syndrome, watches Gwen tag along with her slightly older female cousin at the beach.  He observes them as they run into the ocean.  The difference in their height and body structure is noticeable.  Gwen’s body remains almost childlike while her cousin’s decidedly does not.

Growing up with older female cousins, particularly my cousin Abby (10 months my senior), I couldn’t help but compare my body to theirs.  I always wanted to catch up but never could.  I distinctly remember one December shopping with my aunt, cousins, sister, and mom.  I desperately wanted to be able to finally buy clothes in the misses section (not kids, not juniors …) like my older cousins.  Nope.  Not yet.  Even though I was now in high school, it would have to wait.  In that opening scene of the novel, I could distinctly visualize Abby and I swimming somewhere as preteens.  In my head, I was the one comparing.

Later, Gwen is described as hiding herself away from the world in a job in which she remains in the background.  Now in her late 20s/early 30s, she wears jeans, t-shirts/sweatshirts, and sneakers everyday, all often too big for her.  Given the choice, I’d be right there with her (and am when I can).  Quite simply, it is often difficult to find clothes that fit correctly if you are a woman with Turner Syndrome.

A few years ago, I tried on a top while shopping with my mom.  I loved the color, the style – everything – except the fit that wasn’t quite right.  I came out of the dressing room to ask her opinion.  My mom almost mumbled under her breath:  “Damn Turner’s body!”  I found it hysterical because that is precisely what I was thinking.  I just needed it verified.  As much as I love the button-downed look, I could purchase blouses three sizes up and still suffer from gap-osis.  Sadly, fashion is a struggle at times.

At the end of the novel, I can’t help but root for Gwen.  She is so fed up with her family members’ actions and reactions to the life she has created for herself and the fact that she finally met someone that she runs off to the Caribbean to be with her new boyfriend.  Considering how her family treats her and reacts to different aspects of her life, I can’t say that I blame her.  Her new life in the Caribbean sounds fantastic.

I admit, I am extremely guarded about my personal life as well.  It is just that I’ve always needed space.  Throwing infertility into the mix is never easy.  The idea that someone you love would have to give up having biological children of their own to be with you …  Well, unfortunately, that is reality in many cases.  I pray that it will get better with age, and in some ways, it already has.

When I finished The Condition all those years ago, my immediate reaction was one of wonder.  Did Jennifer Haigh have Turner Syndrome herself?  Did her best friend?  Who did she interview to get into our heads so well – or at least my head?  I loved the title of the book.  One may think that “the condition” references Turner Syndrome, but in reality, in the book, each member of Gwen’s family battles demons of their own, even without a diagnosis.

I am a firm believer that everyone has something – some huge hurdle he or she needs to overcome in life.  Everyone has a story.  As The Condition lingered in my mind, I couldn’t help but feel “seen” in a way I’ve never experienced in a book.  As a teacher, it reinforces the need to expose students to as many diverse books as possible. Unfortunately, when we talk about diversity in literature, we too often just focus on race, religion, and sexuality.  The reality is that there are so many other stories out there and so many other ways to view diversity. This is one reason why I wish everyone would share their story in some way, shape, or form.  No one is ever truly alone.

By the way, if you happen to be the parent of a girl with Turner Syndrome, I can’t recommend the National Turner Syndrome Camp enough.  I attended two years, and it allowed me to meet others with Turner Syndrome for the first time.  It also boosted my confidence in a way that nothing else ever has.