Category Archives: Turner Syndrome

Book Review: “The Stage is on Fire” by Katie Steedly

The Stage is on Fire Book Cover

It isn’t often that a book comes along and grabs you by the jugular.  Katie Steedly’s The Stage is on Fire did just that.  At the same time, I’ve struggled to write this review in the weeks since I finished the book.  I related to and adored the first two-thirds of the book.  The last third left me angry and upset, which I will get to later.  While I wouldn’t go out of my way to recommend the book, there are certain people I feel need to read the book, namely girls and women with Turner Syndrome.  Actually, I would recommend it to anyone struggling to find their place in the world.  That said, it is not for everyone.

Let me start with what’s working.  Almost immediately, Katie’s voice struck me as authentic and powerful.  She writes spirituality well, and never gives up on her quest to find her place in the world and create her own definition of home.  In the book, Katie details several moves across the country, her experiences in academia – good and bad, and her experience participating in the study of women and girls with Turner Syndrome at the National Institutes of Health in Washington, DC.  Turner Syndrome aside, I couldn’t help but relate to Katie throughout the book.

I am still in awe when I think of just how much Katie and I have in common.  We both taught at some point.  We are both writers.  Both of us have moved across country to pursue new opportunities and a new life.  In addition, both of us struggled with the idea of home and family at various times.  I could go on and on.  In the end, this is why I felt so disappointed in the ending.  It seemed to unnecessarily divide people.

There are several things that stood out and continue to stand out in the book.

  1. Her first teaching experience did not end well – hence the title of the book. Oh, I can relate.  In Katie’s case, she took the opportunity to further her education, eventually landing at the University of Texas in Austin.  She did what everyone needs to do when facing failure:  Get back up and try again.  She does this many, many times throughout the book, always seeking something more.
  2. She captures the journey to find our place in the world, peace, and meaning in life beautifully. I may not agree with her completely when it comes to religion, but I can fully relate to her need to explore what religion and spirituality mean to her.
  3. It took incredible courage for her to participate in the National Institute of Health study. It is much more intense and in depth than I ever dreamed.  Her description of what she felt emotionally while having an ultrasound knowing she will likely never experience pregnancy will stay with me.  I only wish I had written it.  Even though I experienced many of those same emotions as a child when I had an ultrasound, I wasn’t mature enough to fully express them at the time.  Now, as an adult, the fact that those feelings have been so beautifully put into words is a true gift.
  4. Did I mention courage? During her time in Austin, Katie decided to walk/jog a marathon.  A marathon.  Prior to this, there is not much mention of any athletics in the book on her part.  She is much more interested in drama, writing, and education.  Yet, she did it.  She accomplished the goal she set for herself, even if it was out of her element.

Oh, and dating.  It is worth mentioning.  Katie is far more adventurous in the dating  world than I will ever be.  At the time, she had yet to meet the right man.  I get the impression that that may have changed.  Her determination to not give up on love is inspirational – and something I desperately needed to read.

There is so much more in the book, but I will leave it for readers to discover.  It is important to note that the book is written as a series of essays.  I believe they are largely in chronological order.  Ultimately, it doesn’t matter much.  Katie clearly grows throughout the entire book, as does her definition of home.  It may seem to be a small point, but I wish the formatting of the Kindle edition included a full title page between essays.  Instead, they include small titles similar to chapter titles at the very top of the page.  In fact, in writing this review, I had to check my Kindle version to see if each essay included a title at all. Each essay stands alone so beautifully, it is a shame that this feature of the book isn’t more prominently displayed.

Now to discuss what isn’t working.  Frankly, I didn’t enjoy the last third of the book at all.  I almost put it down.  It became far too political for my tastes.  It is one thing to pick up a book on politics, knowing what you are about to read, it is quite another to dive in head first after reading a seemingly different book in the beginning.  I get why she wrote about politics.  It became an important part of her life at that point in time.  I don’t believe it was handled very well.  I left feeling as though she couldn’t even begin to understand anyone who didn’t agree with her politically, which is truly unfortunate.  No one has a monopoly on political truth.  No one.  I wish it had been handled with more care and less judgement.  I get the feeling that Katie would be the last person to think of herself as judgmental, but that is how the political aspect of the book comes across, whether that was her intention or not.

Politics aside, I am happy I read the book.  I am grateful that Katie can connect emotionally with people through her writing.  Her writing is just beginning to teach me how to express what I thought impossible.  For that, I am truly grateful.  I love the fact that I can annotate and highlight my Kindle version of The Stage is on Fire.  I will be coming back to it as I continue to write.  You can find her website and blog here.

travel lost

A Cracking of The Heart: The Life of Sarah Horowitz

A Cracking of the Heart

Goodreads Review – A Cracking of the Heart by David Horowitz

Where do I even begin?  First, A Cracking of the Heart is first physical book I’ve read in quite some time.  Lately I’ve only been reading Kindle version of books.  I mention this because I collect physical books, and frankly, I can’t stand when people bend pages to mark a page.  Well, there were so many passages that I want to remember and revisit that my hardcover version of the book is hopelessly dog-eared.  I will be rereading this particular book, possibly more than once.

It goes well beyond the fact that Sarah, the woman’s whose life is the subject of the book, and I share the diagnosis of Turner Syndrome.  Sadly, Sarah dealt with many more issues and complications than I ever have.  What strikes me most about Sarah’s journal entries and inner dialog in the book is that the struggles she discussed most are the same ones that I have battled most of my life.  It is stated that Sarah never adopted due to her concerns about her financial stability.  This is the reason why I am working so hard to achieve that financial stability.  Everything that I am currently doing in my life will eventually put me in a position to finally create the family I’ve always wanted – hopefully.  There is no other way.  I refuse to believe that I am not meant to have a family of my own.

One passage that deeply disturbed me is the detailed description of Sarah’s failed attempts at finding love.  She did fall in love.  That same man loved her.  However, it didn’t end in marriage.  Instead of choosing to marry Sarah and accepting her for who she was, Joel married another woman.  In the book he admits that he made a mistake, that at the time he was drawn to the physical, and that his resulting marriage only lasted a few years.  He implies that he should have married Sarah.  This is my worst fear writ large.  No matter what I do, no matter how much I love, and no matter what I achieve in life, men will not be able to look past my physical characteristics.  I have yet to be proven wrong.

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If the truth be told, everyone let Sarah down – society in particular.  In her short life, she continually fought to be taken seriously, fought for her independence, and fought to achieve in spite of the physical obstacles she faced.  Her father, famous political commentator David Horowitz, implies that he regrets certain aspects of his relationship with his daughter.  Father and daughter happened to disagree politically.  Frankly, my personal political beliefs are more aligned with David’s; however, he makes a compelling case against Sarah being naïve or easily manipulated in her convictions.  Even though we may have been in serious disagreement politically, I like to believe that Sarah and I would have had a lot to share if we had ever met.  I love the fact that she, like so many women with Turner Syndrome, was stubborn to a fault.

There is so much in her life to which I can relate.  For example, I share her love of words.  She struggled to find her voice and found it difficult to write about her personal life.  Same here.  In the last decade of her life, she found solace in her Jewish faith.  I am just now discovering that organized religion might have something to offer after all.  It goes on and on.  I like to think that her faith offered her some sort of solace in all of the adversity she faced just to complete daily tasks that most of us take for granted.  It will be a long time before I read another book that touches me on such a deep emotional level.

You can read more about Sarah’s life and the book here.

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Chasing Happiness

meant to be

As February and Turner Syndrome awareness month comes to a close, some old debates in the Turner Syndrome community rear their ugly heads.  Every now and then, someone brings up the subject of how women with Turner Syndrome are portrayed in popular culture.  Believe it or not, Turner Syndrome is portrayed in popular culture with varying degrees with accuracy.  Some stereotypes do more harm than good.

One of my old favorite TV shows, Law and Order:  SVU, once aired an episode named Clock with a protagonist, 17 year-old Janey Speer, with Turner Syndrome.  Originally Stabler and Benson believe that Janey is the victim, but soon it becomes much more complicated than that.  Inaccuracies relating to Turner Syndrome aside, the way in which Janey’s boyfriend is treated in the episode is particularly troubling to me.  Essentially he is treated as a pedophile.  Connor’s motives for being with Janey and going along with her plans – and they are certainly her plans – are continually questioned due to the fact that Janey looks so much younger than she actually is.  Janey’s emotional and intellectual maturity is never mentioned.

The episode is also troubling because nothing is mentioned about hormone replacement therapy and suggests that most women with Turner Syndrome have a short window in which to become pregnant.  I understand that this piece of information drives the plot; however, I worry that it gives younger girls with Turner Syndrome false hope.  While this may be true for an extremely small percentage of women with Turner Syndrome (less than 5%), it certainly isn’t the norm.  This fact was never mentioned in the episode.

There is one particular scene in Clock that I love though.  When Janey is the hospital and her entire plot to become pregnant comes to light, someone mentions that women and girls with Turner Syndrome are extremely stubborn.  While it is fair to mention that I would have been extremely stubborn anyway given family history, I love the idea that it is a trait of women and girls with Turner Syndrome.  Why wouldn’t we be?  We have to fight that much harder to get what we want out of life – and I see nothing wrong with that.

Another well-known portrayal of Turner Syndrome in popular culture, Gwen in The Condition by Jennifer Haigh, is much more realistic in my opinion.  There is a scene in the beginning of the novel where Gwen is compared to her slightly older female cousin.  That scene sticks with me because it is precisely what I did at that age.  While the way in which Gwen’s family deals with the fact that she has Turner Syndrome is extreme and appears false to me, I love Gwen’s reaction to it all.  She comes across as the most levelheaded person in her family.  Ultimately, she realizes what she is missing in her life and pursues it with all that she has.  Her decision to risk it all for love by uprooting her life and starting over in the Caribbean is one of the most personally satisfying endings to a novel that I have ever read.  It is something I would consider if I were in Gwen’s situation.  I couldn’t help but cheer for her sheer force of will to be happy.

Everyone seems to have a different opinion about Clock and The Condition.  I admit that both have their issues, but it still amazes me that Turner Syndrome is portrayed in popular culture at all.  What impresses me is that girls and women with Turner Syndrome are largely shown to be strong willed and determined to let nothing stop them from achieving anything.  It may come across as naïve or overly optimistic, but I would rather be determined than resigned.  Resignation never helped anyone.

Caribe

The Iowa Caucus and Sarah Horowitz

cracking

A Daughter Brought to Life – National Review

Teacher, Writer, Human Rights Activist Dies Unexpectedly at Age 44

What My Daughter Taught Me About Compassion – David Horowitz

Whenever I think of the Iowa caucus, I think of Sarah Horowitz.  I first learned about her during the winter of 2008 when she spent time campaigning for Barack Obama ahead of the Iowa caucus.  While I can’t pinpoint the exact online article that brought her to my attention, I will never forget her story.  As you can tell from the headline of her obituary in the JReview, she spent her brief life pursuing education, both as a teacher and as a student, and serving as a political activist.

In order to fully understand Sarah’s story, it is best to start with her father, conservative commentator David Horowitz.  Originally a product of the new left during the 1960s, his political views changed considerably over the decades, and during the 1980s, he became a well-known conservative commentator.  He is still well known in conservative circles, and the stark contrast between his political views and those of his daughter highlight the best and worst of our current political system.

I first came across David Horowitz’s work more than a decade ago when I was a certified political blog junkie.  I doubt that I would have ever came across his work today.  I would not know Sarah’s story if it were not for her father.  While deep political divisions have a way of tearing families apart, it is clear from his columns and everything written about his daughter Sarah that David Horowitz not only loved his daughter, he admired her too.  I suppose that is the larger point.  Both the left and the right have much to offer.  Why aren’t we all listening to one another?

After learning that David Horowitz wrote a book about Sarah’s life, I purchased it.  At that point, her life intrigued me.  The sad fact is that even though I’ve owned the book for over seven years, I have yet to read it.  Sarah Horowitz had Turner Syndrome, and the fact that she passed away in her 40s from heart complications quite frankly scares me.  Even though my personal political views are vastly different from hers and I can’t begin to imagine all of the physical complications (both from Turner Syndrome and additional causes) Sarah faced on a daily basis, I still see myself reflected in her story.  It is time I finally read the book.

Vision of Unity – Tablet – An interview with Sarah Horowitz published just prior to her death.

Included in Tablet interview, 2009.

Included in Tablet interview, 2009.

Turner Syndrome: My Story

keep-calm-its-only-a-missing-chromosome-4

Those who know me may or may not know that I have Turner Syndrome.  While I am open about Turner Syndrome, it isn’t something that comes up all that often.  I’ve struggled for years to put into words just what Turner Syndrome has meant in my life.  While I certainly wouldn’t be the same person I am today if I did not have Turner Syndrome, it has not defined me.  I admit, Turners has made certain things, such as motherhood, more challenging, but for every young girl with TS reading this, I want to make this as clear as possible:  Turner Syndrome has yet to stop me from achieving anything.  As tomorrow marks the beginning of Turner Syndrome awareness month, I am sharing my story.

My name is Lindsey Russell, and I was diagnosed with Turner Syndrome at 3 years old.  At that age, I fell off the growth charts, and I was fortunate enough to have a concerned pediatrician, Dr. Wright, who had previous experience with Turner Syndrome.  The fact that I have Turner Syndrome was then confirmed by an endocrinologist at Mott Children’s Hospital at the University of Michigan Medical Center.  Even though I attempted to find out if I have classic Turner Syndrome (the entire X chromosome is missing) or mosaic Turner Syndrome (only part of the X chromosome is missing) in my 20s, I never received those copies of my medical records.  Throughout my early childhood, I had yearly check-ups in Ann Abor.  Even though I didn’t know I have Turner Syndrome until I was 10 years old, I could sense that I was somehow different.

Fortunately, I do not have the more serious heart and kidney issues associated with Turner Syndrome.  I do have a large number of moles, short stature, and infertility.  I also had issues with reoccurring ear infections as young child, which resulted in several sets of tubes (I couldn’t even tell you how many) and slight hearing loss.  In fact, I hated seeing the ENT (ear, nose, and throat) specialist, Dr. Stoddard, because I dreaded getting another set of tubes.  For the record, Dr. Stoddard was one of the nicest doctors I ever had, and I feel terrible that I hated him so much as a child.  My fear of tubes stemmed from my memory of my last set of tubes at age four (I think).  I remember throwing up due to the anesthesia, and I was terrified I was going to have to go through that again.  For the record, I have yet to meet a girl or woman with Turner Syndrome who did not have several sets of tubes as a child.

When I was ten years old, everything changed.  In the early 1990s, HGH (human growth hormone) came into use for “treatment” of Turner Syndrome.  In fact, in later years, I met girls slightly older than me who participated in the clinical trials.  At age ten, I started daily injections of HGH.  I stayed on those shots until I was 15 years old.  In fact, the development of HGH treatment for girls with Turner Syndrome is how I found out I have TS.  In order to be considered for HGH treatment, I had to spend a night in the hospital for hourly blood tests.  As I was not sick, my parents were put in a position where they had to explain that I have Turner Syndrome.  I am deeply grateful to my parents for their honesty and their insistence that I could achieve whatever I desired.

Today, I have mixed feelings about the use of HGH for the treatment of Turner Syndrome.  I don’t believe that short stature should be treated as a disease.  It is that simple and that complex.  I completely understand why my parents decided to put me on HGH.  They simply wanted the best for me.  What I do not understand is the medical profession’s singular focus on height in girls with Turner Syndrome.  During my adolescence, there was little if any discussion of infertility, possible learning issues, or anything else.  The focus was almost exclusively on HGH, the timing of puberty and hormone replacement therapy (again, related to height), and, of course, final height.  I felt like a freak of nature.

Adolescence and puberty are hard enough; now imagine it planned, measured, and discussed at length.  Like any other adolescent girl, I just wanted to fit in.  I didn’t, and I never would.  At age 14, I had the opportunity to attend a camp exclusively for girls with Turner Syndrome.  It changed my life.  For the first time in my life, I met other girls with Turner Syndrome.  I finally met others who shared similar body and social issues.  I had the opportunity to travel halfway across the country on my own.  I attended two years, and I credit camp for giving me the confidence to study abroad repeatedly during my years at Michigan State.  By having the opportunity to meet others with TS, I realized that I am not a freak, and I am certainly not alone.

Today, after having earned degrees in supply chain management and Spanish from Michigan State University, I am going back to school to teach Spanish and/or social studies at the middle school and/or high school level.  Once I am established in my new career, I hope to adopt.  Even though the pain of infertility never fully goes away, I do believe that I am meant to adopt.  I am looking forward to the next chapter in my life.

Women and girls with Turner Syndrome face a wide variety of physical, emotional, and social challenges.  They also happen to be one of the most highly educated and determined group of women and girls I have ever met.  Never let a label define you or let anyone underestimate your ability.

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Politically Incorrect

overshare

Is There Such A Thing As Oversharing? – Blog Her

This.  All of this!  I could have easily written this blog post.  Fortunately, this past year in particular, I’ve tried to be more discrete when it comes to what I share online.  There is always – and I do mean always – so much more I would love to say.  In fact, it ended up biting me in the butt once or twice.  The funny thing is that in one case, one side of my family thought I was referring to them when in reality, it happened to be about something else entirely.  In the other case, the blog post in question was over five years old.  Five years!  It is the only blog post I’ve ever taken down.  I took it down more for personal reasons than any other concern.  It was definitely a case where I wrote out of raw emotion more than anything else.  The bottom line is this:  Aside from close family and friends, I really don’t care what people think about me.  Life is too short.

I’m struggling with this issue again.  February is Turner syndrome awareness month.  As a result, I want to write about my personal experiences with Turner syndrome.  Whether I acknowledge it or not, it has a profound impact on who I am.  The piece will be shared via a Facebook Page for a non-profit organization called A Walk for Ferrial.  I have so much to say, and not everyone will want to hear it.  In the past, I’ve actually left Facebook groups designed for women and girls with Turner syndrome due to conflicting issues.  How do I manage not to be misunderstood?  I’ll have to tread lightly, but if just one girl or young woman with Turner syndrome comes across my writing and recognizes that she is not alone, that there is someone else out there who has had to deal with the exact same issues, it will have all been worth it.  I am fed up with political correctness and not discussing issues that need to be discussed.