1984. In March, a year-long strike action would
began in the British coal industry; In August the Summer
Olympics were held in Los Angeles;
in November, Ronald Reagan defeated Walter F. Mondale with 59% of the
popular vote; Galileo was forgiven by the Vatican for working on the Earth
orbit 368 years after being condemned. In January 20th of
that same year, in Mar del Plata, Argentina, an event of no significance for
the world but crucial for one ordinary middle-class family would take place. At
1.05 AM, the daughter of a 39 year old neurotic woman and her 35 year old
alcoholic husband would be born. But no parenting book would prepare them for
what was to come.
I was
an average infant. I cried non-stop every evening, it was most likely colic. (But
knowing me and my mom, it could have been just excess of codling). I became a
very active energetic toddler, reaching each milestone at the typical age. Even
though I constantly had urinary infections because of a blocked urethra, there
was nothing that would make anybody suspect I was not a typical child… until I
stopped growing. I became the smallest in every group.
By the
time I was seven, my mom became concerned by how short I was. She mentioned it
to my doctor. She was repeatedly told that there was nothing wrong with me, I was
simply short. A doctor, who was a bit short himself, actually told her: “Well,
ma’am, not everyone is tall, blonde and blue-eyed”. They chalked up my shortness
to my grandma being also quite short. But my mother had a bad feeling. As most
mothers of children with rare conditions have to do at first, she became my
advocate and demanded a proper diagnosis. She found a doctor that would listen
to her and I was diagnosed with Turner Syndrome.
Turner
Syndrome is a genetic defect that affects only females, one in 2000. It means
that one chromosome is missing in all or some of your cells. Typical people
have 46 chromosomes in heir cells. People with Down’s syndrome have 47. People
with TS, 45. The shocking part is that 98% of fetuses with TS don’t get to be
born. It is estimated that 10% of miscarriages in the US happen because of TS. So, if you have TS and are reading this,
congratulations! You already won the most difficult fight of your life. But that
is only the beginning.
The
list of things that may happen to people with this genetic abnormality is as
long as it is scary: shortness, infertility, kidney deformities, webbed neck,
loss of hearing, bad eyesight, heart condition, diabetes, celiac disease, thyroid
conditions, excess of moles, low bone density, etc… While our intelligence is
typical or superior, we are prone to Non-verbal-learning-disability, and ADHDB.
But we are individuals. As such, we are not all the same. Some women are barely
affected by the syndrome, while others have many of the traits and medical
conditions associated with it.
But I
didn’t know any of that when I was seven. At the time, I was only told that I
had a genetic defect called Turner Syndrome. As a child, I understood that the
body is made of cells, cells have genes that give the individuals their unique features:
hair colour, eye colour, etc… and I was born without one, something extremely rare.
My atypical condition meant that, unlike everyone I knew or had ever known, I
would only grow if had an injection every single night. At the age of seven, all
that information only meant one thing: I was a freak. Everyone else had normal
bodies, but not me. There was something wrong with me. Those were negative
thoughts that I carried with me most of my life, and I’m still struggling to
get rid of them.
While I
wanted to ignore the syndrome as much as possible and hide it, my mom became a
walking encyclopaedia about the condition. She founded and presided an Association
For Parents Of Girls With Turner Syndrome. I wanted nothing to do with it. I
met other kids with TS from my city, but I wasn’t too excited about it. It made
my sweet denial impossible. In my early twenties, I finally became best friends
with another woman of Turner Syndrome. However, it wasn’t until I turned 30
that I was ready to face the facts and truly own my condition, rather than
letting it own me. By “own” I don’t mean
being happy about it. I still suffer from depression and low self-esteem, after
all. I mean that I’m no longer in denial, I know more about TS than my mother
ever did. I accept that it inevitably affects me in many ways, but I can still build
a good life for myself.
Then I
went online and discovered several facebook groups for women with TS and their
parents. But I found the Hispanic groups too dominated by the parents, and I
figured I could learn more from countries medical discoveries so often come
from. That’s why I switched to groups for English-speakers. It was there where
I learned that the US Turner Syndrome Association promoted the butterfly as a symbol
of the condition. Not just that. Butterflies seems to mean so much more for
most. Parents call their daughters with TS “butterflies” and the women with the
condition also refer themselves as butterflies. Phrases like “I have a ten year
old butterfly”, “Butterflies need to have their hearts checked”, “Good morning,
butterflies”, etc… are fairly common in every group.
But I must
confess that I hated such nickname instantly. I know mine it’s an unpopular
opinion, but it rubbed the wrong way.
I found
very offensive that, whoever started the moniker, felt a group of extremely strong
women need to be pampered and have their diagnosis sugar-coated. It’s one thing
when we are talking about the kids with TS. Perhaps, they need to be called
butterflies to be okay with the situation. But I’m a grown woman, and I don’t appreciate
the patronising. I’m a woman, a real woman, who has TS. Why should I need to
hide in a fantasy from that fact?
My
other objection to the nickname is the choice of a small insect that only lives
a few weeks, and the gender stereotyping it promotes. Women are usually
associated with butterflies, bunnies or lady bugs, perceived as girly. Cute and
harmless. When females are associated with bigger, stronger and more dangerous
animals is either to sexualise them (cougar, cats), to insult them (snake, hyena,
dog, pig, bitch…) or to praise them for being good mothers (mama bear, lioness…).
I also
feel that calling a large number of people “butterflies” erases our uniqueness,
giving all of us the same label. We are not all carbon-copies of each other. We
have unique personalities, very different stories and perspectives.
Calling
ourselves, or others, as “Butterflies” feels like the person’s whole identity is
about TS. That’s simply not true. We are not TS women or TS patients. We are
women with TS. The person should always come before the diagnosis.
I’m so
much more than a person with TS. I’m many-many things
I’m a
wanna-be writer and amateur photographer who hopes to be professional someday. I’m
addicted to coffee and American TV shows. I’m a non-practicing Methodist and a fierce
Clinton-loving liberal, but I can be a bit conservative regarding economics (at
least for Argentinian standards).
Being
born and raised in Argentina, I have a strong personality. I tend to speak loudly
and gesticulating. Most Argentinians are extremely friendly, generous. I may be
socially inept (unlike the average Argentinean), but I have a few close friends
that I adore. When I make a friend, I really value them like family. As most
people in my country, when I meet a person I like, I’m quick to welcome them in
my circle of friends, even if the sentiment is not always returned. I can chat
and chat for HOURS. I’m accustomed to financial crisis, very corrupt
politicians and unsafe streets.
From an
astrological point of view, I’m a Capricorn. As such, I’m defined as ambitious,
melancholic, rational and pragmatic, almost Machiavellian.
Born in
1984, I’m one of the oldest members of the Millennial generation, also called “Y
Generation” or “Peter Pan Generation”. Sociology describes us as narcissistic
and entitled. We live with our parents longer than those who came before us,
postponing most rites of passage to adulthood. While previews generation often worked
in the same company all their lives, we tend to bounce from job to job. We are much
picker than our elders when seeking employment. We want to work for a living
doing what we like, rather than giving our lives to an unsatisfying job or a
company. In my case, there is a lot of true about that. Admittedly, I now
settled for a job I hate, because I need to support myself. But I feel that I
deserve much better, and I’m trying to get a job I actually enjoy more. I like
to take selfies. However, unlike what it’s often said about millennials, I have
a strong work ethic.
I’m
also a bullying survivor (Many girls with TS are). To me, school was a
nightmare. I was constantly tortured by my classmates for 10 years, and the
adults in my life handled it terrible. Such experience leaves a mark in you.
I also
like to say that, as born in the 80’s, I belong to the last sane generation
ever. I grew up playing on the streets, talking to friends face-to-face. Teachers
were more respected, and sometimes feared. Your bad grades were your own fault.
If you lost a competition, you had to deal with it. No participation trophies.
We didn’t need to baby-proof anything, or car-seats, or seatbelts. Parents were
not obsessed with gluten. We knew nothing about terrorism or anti-bacterial
gels. The anti-vaccine movement was smaller and weaker. The word transgenic was
not in our vocabulary. (It’s amazing that we are alive!) People read the newspaper
and cared about the quality of the article, while now it’s all about speed and entertainment.
When I was bullied, I could at least get a break from it on weekends and school
holidays. Kids now have to deal with ciberbullying, 24/7.
So, there
is always so much more about a person than any diagnosis. I’m no butterfly.
