Let’s talk about growth hormones and heightism

                      

Turner syndrome affects each person in very different ways. We are all unique individuals. But there is one thing over 90% of people with such condition have in common: short stature. Our bodies don’t produce the hormones that humans need to growth normally.

When I was around 4/5 years old, it became evident that I was much shorter than my peers. The TS diagnosis followed a couple of years later. Lucky for me, it was the early 90’s and doctors had developed a synthetic form of growth hormone that could replace the one my body would have produced if I had all my chromosomes. By then, treating kids with TS with daily injections of such hormones was the standard procedure.  Over the years, there have been technological developments, such us novel injection devises, creams to make the shots least painful (I would have killed for that!), etc... But the recommendation of going with this treatment never changed.   

Doctors start prescribing the injections either when reaching the diagnosis, or as soon as the kid stops growing normally. The treatment normally stops around the age of 14, since that’s when it’s usually no longer effective. How can doctors tell the exact point when that happens? I had yearly x-rays of my hands that showed my “Bone age” (maturity of the bones). Once the bone age matches the kid’s chronological age, the body has reached its full growth potential, rendering the synthetic growth hormones useless. It’s time to start HRT to go through puberty instead.

The goal is to reach a height of, at least, 1,52 meters. In most countries, the average height for adult women is close to 1,60 meters, but circa 1,53 is the point when a female adult is considered medically “normal”. Short still. But “normal short”, if you understand what I’m trying to say. (I mean no offense to anybody. I didn’t invent standards of heights, after all).

Mums whose kids were recently diagnosed with TS are sometimes fearful, and even reluctant, to put their kids through this treatment. The side effects are too scary, the kids suffer too much the daily injection, it’s a synthetic substance in our bodies, etc…. It’s natural for a mum to worry. But when they express their concerns in our facebook page, their doubts are met with a resounding DO IT! from the majority of the members, and only a few voices of dissent.

My doctor estimated I would have been around 1, 44 meters (4.6 feet) or maybe less without it. By the end of my treatment, I was 1,53 meters (circa 5 feet). I can’t argue with those results. It doesn’t seem much. But, to me, those extra few inches meant everything. Sadly, two years ago I found out I shrunk a couple of inches, as it can happen when you get older (bad posture, etc…).  

Of course, results vary in each kid. The very fortunate in our facebook group reached 5.3 feet or more with the treatment. Others remained below 5 feet even with it. Other very-very lucky ladies managed to pass 5 feet without treatment. But you can’t know for sure. Basing on my own experience and observations, kids with very tall parents/grandparents get the better results. My parents were average, but my paternal grandma was as short as me, and I have an even shorter great aunt. I didn’t have much to work with to begin with.

It is true that the daily injections can be painful and very annoying. I complained about them constantly. Sometimes, I wanted to quit the hormones. I once asked my doctor what would happen if I quit. Her answer? “You’ll be like a dwarf”. Rough, blunt. But it worked. I never talked seriously about quitting again. At the end of the treatment, I was sorry I couldn’t continue and get taller. I wasn’t entirely satisfied with 5 feet. I would have gladly taken them for another year of two if that mean a few more inches. I would happily take them right now if I could! So, to all the mums: don’t let your kid’s whining and crying discourage you. She’ll thank you when she reaches a relatively normal height.

The possible side effects of GH include: Nerve, muscle, or joint pain; swelling due to fluid in the body's tissues (edema); carpal tunnel syndrome, numbness and tingling of the skin, high cholesterol levels. HGH can also increase the risk of diabetes and contribute to the growth of cancerous tumors. Scary, I know. But any medication you have in your medicine cabinet comes with a LONG list of terrifying side effects that never happen. I personally didn’t get any. Keep in mind that doctors and pharmaceutical are obligated to warn you about every possible side effect, no matter how unlikely, to avoid a law suit. Even if only one person got certain side effect while testing the drug, they must put it on the list.

I wasn’t informed about the side effects at the time. Probably because I was too young and they didn’t want to scare a child. But I’m incredibly happy that my mum decided to take the small risk. Those hormones were the best gift she ever gave me.

It scares me when some mums talk about “natural alternatives” to GH, because they don’t want to inject an artificial substance in their girls’ bodies. There is NO natural alternative to GH. Only the synthetic hormones help our bodies do what they would have done if we had all our chromosomes. Herbs won’t work. Changing the kid’s diet won’t work. You can light candles, use crystal balls and pray. That won’t make your kid taller, unless she’s extremely lucky and TS didn’t affect her much.  

Think about it: if your kid had diabetes, you wouldn’t hesitate to give her insulin, which is artificial too. Any responsible parent gives his/her kids all necessary medication. Growth hormones, to us, are what insulin is to someone with diabetes. It’s not just about height. It has other benefits, such as helping with muscles development. But being taller on its own is more important than you’d think. Some parents argue that “just a few extra inches” are not worth the risk. But reaching a normal height can make a big difference.

First of all, everything we use in our daily lives is made assuming that an adult is 5 feet tall, or taller. Clothes, cars, chairs, adult bicycles, pools, pool tables, etc…  Buying clothes off the rack in the adult section can be a challenge for shorter people. People who are too short need special aids for driving and stools to reach things on higher shelves. Stores put many of their products out of reach for us, and we find ourselves in the humiliating situation of having to ask for assistance.     

Not that short people can’t do anything. Being 5 feet, I’m able to ride a horse if someone helps me mount it. I’m able to ride an adult bike and buy pants of the rack. HOWEVER, when I rode a bicycle, I sometimes fell when trying to stop, since my feet don’t reach the ground if sitting in it. More often than not, I need to shorten the pants I buy.

Some professions are off limits for short people. I always wanted to be a flight attendant, because I love to travel. But the height requirement made it impossible. A flight attendant must be able to help the passengers put their luggage in the compartment, which I can hardly reach. Pilots have to be above 1,60. The police department and the army have height requirements as well. Not to mention the fashion industry and the world of professional sports.

But the worst part of being short is becoming victims of heightism. This is something people with average height don’t get, or don’t even believe it exists. But it’s very real.

In school, the shorter kids are more likely to get bullied.  

And the discrimination doesn’t end there. Various studies show that being taller is linked to a bigger income. Taller people are more likely to get hired or promoted than their shorter peers.

Personal anecdote:  I was a young university student, dreaming about being a reporter. One of my mum’s clients, let’s call her Lucy, owned a small news agency in Buenos Aires, and wanted me to cover for her The 2005 summit of the Americas that would occur in my hometown. (She was unable to attend). All the presidents in the Americas would be there, including George W. Bush (I’m not a fan of him, but the prospect of meeting such an important person was still thrilling). It was probably the biggest event in the history of my city. I was over the moon. On the first day of the summit, I went to get my press credentials wearing my best clothes. The organizers of the event refused to give them to me. I didn’t understand what was going on. Everybody else was getting them. I had them call Lucy to check that I was actually sent there by a real news agency. They called her and confirmed my story. They didn’t care. They still refused to give me the credentials. I went back home broken-hearted and very confused. When I called Lucy to find out what went wrong, she told me that the organizers said that the event was too important and they could only allow “serious”, “real” journalists. I was studying journalism at the university, I was sent there by a news agency. Why didn’t they believe I was serious?

I didn’t understand it at the time. But after reading a lot about heightism, I know now that shorter people are very often overlooked, underestimated or disrespected.  

Some people say “it’s all about attitude”. Of course, your talents and personality can make up for your short stature. The problem is, you don’t always have time to wow people with your brains and strong personality. A potential employer decides in five minutes if you’ll get the job, or not.  

None of this means that we can’t have a normal life and succeed. We certainly can. It’s just harder to get there. We have obstacles taller people don’t even know exist. However, we persist and we are fierce.

Paraphrasing something I heard on TV:

                                                  a small person can cast a very large shadow.

Childless or childfree?

I was diagnosed with Turner Syndrome at the age of 7. But I was too young to know all the consequences of such condition then. When I was 12, I noticed that all the girls of my age were turning into young women, except me. Other girls were growing breasts and getting their periods. I was stuck with a childish body. I began asking questions. That's when my mom told me that because of Turner Syndrome and its missing chromosome, my body is unable to produce the hormones that make a girl go through puberty. My ovaries never developed well, so they don't produce oestrogen, and I don't have eggs in me. That means I can't get pregnant in the natural way.
Eventually, I began taking synthetic feminine hormones. Thanks to that, my body developed. My breast grew bigger than I had ever expected, and I got my period. But that's not cure for my infertility. I still have defective ovaries and no eggs.
The day I was told I'm infertile, me and my mom cried together and hugged. However, I learned about alternative options to become a mother:  I can try IVF using an egg donor, or embryo donation, and I can adopt a child in need. Having such options gave me comfort. I even felt excited about adopting a child in serious need. I pictured myself giving a loving home to some African kid or Chinese girl, or even a starving kid from the north of Argentina. It felt right. I considered it a given. Even when I was single, rejected by every man I ever wanted, I contemplated becoming a single mum. Never doubted it would happen, not for a second.
Now I'm older and much less naïve. Guess what? IVF doesn't always work. You can spend years trying, only to suffer miscarriage after miscarriage. And you need a lot of money for it. In Argentina, the government started doing them for free under certain conditions, but couples still have to buy the drugs needed, which are expensive. In the UK, NHS provides IVF.... UNLESS your partner has a kid from a previous relationship. To the UK government, if there is a child in the couple's life, you don't really need another one. My boyfriend has a son. So we would have to do IVF privately. We don't make much money, so our chances to afford IVF are slim. Adoption can get ridiculously expensive too, specially international adoptions, what I wanted the most (So my child's birth family is very far away). Also, harsh reality: not everyone gets approved as adoptive parent. I have a history of mental illness (depression and anxiety), and a low income.
The fact is: motherhood is a joy I might never experience. When it occurred to me that I might never get a child, I began to wonder... what if I never become a mother? How would my life be like?
Society tell us that all women should be mothers. We constantly hear things like "My life didn't have any meaning until I had kids" or, the worst one: "I didn't know love until I have a child". That may be true for some people. But you CAN have meaning, real joy and true love in your life even without kids. If your life is all about your kids, wonderful. But other life styles are as happy and meaningful. Life has so many things to experience that do not include a child. Being childless is not the same as being child-free.
First of all, here's what movies, commercials and mothers never tell you: motherhood comes with a lot of very hard work, sacrifices, and sleepless nights. Mothers are often exhausted. They don't live in a special cloud of happiness, where nothing is ever wrong. Mothers seldom talk about the hardships of motherhood because they fear being judged by society for daring to admit that having kids can be challenging.
I remember all those nights my mom spent awake because I had an ear infection. She was awake the entire night looking after me, while I screamed in pain, and she still had to go to work the next day. If you are lucky to have a wealthy husband able to support you, you can choose to stay home. If that's not the case, or if you want a career, you have to balance the obligations of your job with the constant care your kids will require. Motherhood requires stamina.
Think about all the couples that are DINK (Double Income No Kids) by choice. They may be onto something.
Being childfree gives you all the time in the world to focus on your chosen career and become very successful. You are more available to work nights, weekends if you must, to travel, or take classes at the university... anything you need to earn a promotion. The majority of the most successful women in the world never had kids.
Also, kids are expensive. Being childfree allows you to save a lot of money. You can use the money to enjoy the many other things life have to offer. I lived in Colorado for five months, took a creative writing course in New York. In the last two years, I moved to the UK, visited Amsterdam, Paris, Ireland, Scotland, Tenerife... None of that would have been possible if I had children. Yes, I know parents can travel, IF they have enough money to pay for their children's travel expenses as well as their own. I've observed parents of small children at the airport, and on planes. They barely get five minutes of peace. And in addition to their own suitcases, they are responsible for everything the children need. Once in the destination, they are somewhat limited to child-friendly activities, to whatever the children want. Unless one parent decides to leave the kids with the other and do an activity by his/her own. Of course, if a couple wants to enjoy some tour for adults together during a holiday, it's possible to hire a nanny for a few hours, some hotels assist you with that... which bring us back to how expensive having kids is. Since traveling is very important to me, the idea of giving that up, or having to constantly take care of a tiny person's needs while I try to enjoy my trip, is not very appealing to me. I would probably feel different if I were wealthy, with tons of money to spare for the kids' expenses, and were able to hire help. But that's not the case.
Another thing to consider.... I love spending my free time wearing payamas all day, binge-watching my favourite TV shows, rather than watching Dora The Explorer or a Disney movie over and over again, helping a kid with homework or reading The Very Hungry Caterpillar for the 20th time. 
Don't get me wrong, I love children. I loved looking after my godson when he was little. My time working at a nursery was amazing. But that's because I got all the fun and none of the hardships, no financial burden, no sacrifices. I'm not 100% convinced that I want all the hard work of motherhood, 24 hours a day, 7 days a week.
I'm sure parents accept gladly the downsides because they love their children and parenthood brings a lot of joy. I myself might decide one day that the sacrifices and hardships are worth it. I don't rule it out. BUT I don't believe that children are the only way to experience true love and happiness. Being a mum is one way to live, no better or worse than being child-free. I believe there are plenty of other things in life that can make you happy, fulfilled and complete. It's a matter of opening your mind and find them.

Yes, I spent Christmas alone. No, that's not a reason to pity me.

If a person moved to Argentina on his/her own, by the end of the year he or she would likely receive dozens of invitations to celebrate Christmas and New Year's at the home of some argentine family. For an immigrant in the first world, things work differently. Last Christmas, I winded up by myself. What if I told you I had an amazing time?
When I was growing up, I spent Christmas and New Years quite traditionally.  In my home country, Christmas is celebrated on December 24th. Families get together for late dinner and wait for Christmas. The big meal usually includes: stuffed eggs, stuffed tomatoes, chicken and salads. Ice cream for desert. At midnight, when Christmas officially begins, the presents are opened. Then some families go to the streets and light fireworks and firecrackers (Because in South America many idiots say -Happy Birthday, Jesus- by spending lots of money to make a tremendous noise that causes unimaginable panic to animals, kills birds, and disturbs the sick and the elderly who are trying to sleep). There are also late-night holiday treats, such as sweet bread and turron. For New Years Eve, it's not unusual to have a big dinner at some friend's home. 'Christmas is spent with family, New Years, with friends' is a sacred tradition for many. The leftovers of Christmas and New Years' eve often last for a week. 
For most children of divorce, both holidays must be split between mom and dad. Perhaps dinner with one parent, opening presents and after-dinner snacks with the other. Or the eve with one, and the next day with the other. But my parents had no problem getting together for Christmas eve, New Years' or any other occasion where families share a big meal together. (Easter, May Revolution Day, Independence Day, Mother's Day, Father's Day, Labour Day... etc). Sometimes, my mom and I would travel to Buenos Aires to spend Christmas or New Years with her family. Other times, we would celebrate with the immense family of my mom's best friend, Vera. Vera's daughter happened to be my childhood best friend, Linda.
On January 1st of 2008, around one in the morning, with the neighbours' fireworks still raging in the sky, my father died of lung cancer after two days of agony. After that, the holidays were never the same. In Mar del Plata, my mom, my aunt Betty (dad's sister) and me were the only ones left. The holidays didn't seem like a celebration with only three people at the table. It was just too depressing. I tried to liven up the holidays by suggesting going out for dinner on Christmas Eve, but it was too expensive.  Holidays in Buenos Aires also changed since Grandma Catherine (mom's mom) died in 2003, since she was the glue that held all the family together. Also, I suddenly lost interest in celebrating special occasions at Vera's.  Most of the people of my age in those gatherings were big overachievers, with serious romantic relationships started in their early 20's. So successful at a young age. I felt so very small around them. I had no university degree then, no job, no relationship.   
My first holidays all on my own were when I lived in Colorado, in 2009. Then, I didn't celebrate.  On December 24th I went Ice skating in the morning, and I gave Mexican food a chance eating some tacos on the street. On the evening I had a drink with other foreigners living in my building just for a little while. The next day, I woke up with a terrible case of bronchitis. Not to mention that it'd been a year since my father's death. Needleless to say, I skipped the holiday cheer.
On Christmas 2017, I was all alone again. Except, this time, I was determined to have a great time. On December 24th, I went to London.
The first thing I did was to visit London's Cat Village. It's a café with cats. About a dozen of furry friends walked around, or just rested next to me, while I enjoyed a coffee and some chocolate cake. I took dozens of pictures of the gorgeous felines (you are allowed if you don't use flash), with my brand new professional camera. I was already familiar with the place, since I had visited it in a previous trip. I absolutely love it. If there was a café with cats here in Birmingham, I'd go every weekend.
Afterwards, I took a walk around central London. I saw the Christmas tree in Trafalgar square, where I spotted a group of Hispanic tourist taking a tour. I visited the beautiful Christmas market in Leicester Square, which was packed with people from all over the world. I had fun overhearing some conversations in Spanish with a Mexican accent. I took a lot of pictures, with many unsuspecting visitors inevitably on the shot, giving life to the photos. (I dare you to visit such a touristic place and take pictures without anyone photo-bombing them!). 
By dinner time, I headed to TGI Fridays, where I had reservations for one. I enjoyed a magnificent three-course meal. 
The next day, it was the day Christians celebrate the birth of our lord and saviour. So, I found a Methodist Church, I went to the Christmas service.
After worshiping, it was lunch time. I had reservations in Bella Italia, one of my favourite restaurants. The meal was amazing. The best part was having Italian food on Christmas, which is not usually done in my home country. I broke tradition enjoying pasta carbonara, with tiramisu for dessert.
Now, there isn't that much to do in London on Christmas day, since all the main attractions are closed. An ice rink was open, but it's too far from where I was. However, I was able to catch a movie, The Battle Of The Sexes, which tells the story of the legendary tennis match between  Billy Jean King and Bobby Riggs. Unlike the first movie of the same topic, 'When Billy Beat Bobby', 'Battle Of the Sexes' deals with Billy Jean King's affair with a female hairdresser and the fact that she still hadn't come out as lesbian at the time of the match. This made it far more interesting.
The following day, I had a blast visiting Winter Wonderland. The theme park is very beautiful. I admit it was crowded and disgustingly expensive, but I had an amazing time.
I started Ice-skating, which I hadn't done in years. At first, I felt very insecure, so I rented a training aid that I could hold on to, and it was properly shaped as a penguin. But, after a few minutes, it all came back to me. I felt confident and was able to continue skating without aid. Loved it!
Then, more winter fun visiting the Ice bar: a beautiful bar where everything is completely made of ice, even the glass. It was quite early for a bar, so I was the only one there... but I didn't care at all. I was able to take all the pictures I wanted without anyone getting in the way. I had a strawberry daiquiri. Usually, having a drink slightly before noon is a sign of alcoholism, but, hey, if you are outside the city where you live it's called... vacations! 
I had lunch at the Christmas market within the park. Then I went to an ice-skating show: Cinderella On Ice. I watched the talented performers as they told the story of Cinderella while gracefully skating, jumping, spinning and doing complex stunts. For someone whose biggest accomplishment while ice-skating is not needing the aid, watching them was absolutely breath-taking. I was at awe.
Later, I headed to an exhibit of beautiful ice sculptures. The theme was 'underwater'. There were fishes, sharks, sea plants, scuba divers, mermaids, mythical sea monsters and even Poseidon,  all made of ice.
After a fun day at the park, I headed to Oxford street to take advantage of  the Boxing Day sales. Lots of crazy people doing the same thing!! It was madness, but I managed to get two dresses and two sweaters half prize.
People are so afraid to do things on their own. Society tell us that we are not enough on our own, that we NEED other people. I'm telling you, that's a lie. Having a good time by yourself can be just as rewarding, with the plus of having absolute freedom. Such freedom, such state of peace, is something I miss when I travel with my family.
Call me anti-social, if you want. I'll call it... being happy with your own company.

Why I said "Happy holidays" to my customers, and what happened when I did

In Argentina, where I was born and raised, approximately 90% of people are baptized Catholics, around 70% consider themselves "practising Catholics", but 20% actually go to mass regularly. The second article of the constitution stablishes that the Argentine government supports the Catholic Apostolic Roman church. Anyone is free to follow any other faith, or hold no religion at all. But the government supports only one way of life. What's truly alarming, is that the Catholic Church is the only one financially sustained by the state. All tax payers support it, regardless of their beliefs. Abortion is illegal because of the church's influence in the law. Until the 1950's, so was divorce. Until 1994, the president HAD to be Catholic, by law. The ignorance regarding any other religion is overwhelming. A great number of Argentineans think protestant churches are cults run by greedy charlatans that take money from brainwashed fanatics. And, let's face it, some of them are. (I wouldn't trust those rich pastors that enjoy appearing on TV all the time). But it's extremely ignorant to assume all of them are. Yet, it's human nature to fear what's different.
I didn't realize how wrong it is when one religion is granted supremacy over all others, until I converted to Methodism at the age of 16. Suddenly, my religion was unknown, misunderstood and treated as less.
So, when I read about the bickering going on in the US about saying "Happy Holidays" to strangers over "Merry Christmas", I didn't hesitate to side with those who choose "Happy Holidays".
I was taught that all those who worship the one and only God, and don't do any harm (such as Muslims or Jewish), are equally valid. And even those religions I have nothing in common in with (like Hinduism or Buddhism) are to be respected, so are all good-hearted people that are non-believers. My only grudge is with religious extremists, weather it is an Islamic extremist murdering innocents, or a Christian fanatic boycotting funerals of gay people, harassing women outside abortion clinics or simply being hateful towards those who are different. If your religion makes you hate someone, perhaps it's time to start shopping for a new one.
All major religions have celebrations that occur in December. It'd be wrong to treat mine as the only one. So, in the spirit of respecting all good-hearted people, I decided this year to say "happy Holidays" to my customers. Such greeting includes everybody in my joy.
This took NOTHING away from my Christianity or my personal enjoyment of the season. I still put up a Christmas tree and ate the typical food. I said Merry Christmas to my family, friends, facebook followers and whoever says it first. I went to Church on Christmas day.  And, guess what? The coffee Starbucks offers around Christmas tastes as good, regardless of it's name or the cup's colour. My private spaces are my own. The only thing I didn't do is to impose my beliefs on complete strangers, in a supermarket that belongs to all paying customers. Was that a hard thing to do? Not at all.
The war was never against Christmas or Christianity. There was, however, a fight against white-Christian supremacy. And the supremacists fought back... hitting hard, in the US and the UK.
Two of my colleges told me "This is England! Here we say Merry Christmas!". Yes, England's official religion is Christianity, and it always will be. But what about non-Christians who are British?  Isn't this their country too? Imposing the official religion in all the citizens/residents is not that different than non-Catholics in Argentina being shoved Catholicism down their throats.
Two of my customers protested, telling me to say "Merry Christmas". But most of them responded politely saying "thanks" or "You too". Many of my customer chuckled or smirked, feeling amused. I hope I made some of them think, think about the spirit of Christmas. Reflect on the words of Christ, on his lessons of love, equality and inclusion.

What it’s like living with an invisible condition

Nobody can tell I have a genetic defect just by looking at me. People are not born with their number of chromosomes tattooed in their foreheads. Women with Turner Syndrome do not need crutches, wheelchairs, or any other thing that tells the world we have certain challenges. We go to the same schools other kids go, take the same classes our peers take and are able to thrive. Many of us even reach a height that doesn’t raise any eyebrows, or reveal that something is “wrong” (whatever that means). And we are capable of functioning in the adult world as any other person. Our obstacles don’t mean we can’t get as far as others, even though they sometimes mean it takes us longer, or it’s less easy.    

The invisibility of our condition can be a blessing. We don’t have to tell people about TS if we don’t feel like it. Even though nobody should be ashamed of TS, keeping it secret can help avoiding discrimination. I myself avoided talking about it till my early 30’s.

However, there is a downside of having an invisible condition.

I talked about my condition with the pastor that saved me from being homeless in the UK when my second job here fell through. He pointed out that, after I educated him about TS, he had a better understanding of my struggles. He said that, maybe, telling people about it would make them more considerate when certain shortcomings (no pun intended!) emerge.  

I can’t believe it’d never occurred to me before.

Because I look and act in a way people consider “normal”, it’s incomprehensible, even shocking, for some to understand why I sometimes I don’t actually do things exactly like other people do. Why I didn’t graduate from the university at the same age everyone else does? Why I was brutally bullied at school, and had only one friend who was four years my junior? Why relationships with men don’t come as easily and naturally as they do for every other woman? Why I struggle at work to complete tasks as fast as all my colleagues? Why I had a nervous meltdown when things at work weren’t going too well? Why sticking to a routine is so important to me?

At this point I should clarify, that not all women with TS are identical. Many ladies with my condition do everything as everyone else does. University graduation, financial independence, promotions, marriage, kids (Either through adoption or IVF babies), friendships, etc… Everything at the age people expect them to. It all depends on HOW the syndrome affects the person, and on the individual’s personal history. It’s not the same to grow up in a loving, supporting home than in a hostile environment (like some women in the group say they did). It’s not the same to spend your formative years surrounded by friends, than to grow up being physiologically tortured by bullies. I can only share my own experience.

One of my biggest struggles is suffering from high-functioning depression and anxiety (which is not unusual among women with TS). Partly because my brain came wired the wrong way (depression runs in my father’s side of the family), and partly because of ten years bullying that was poorly handled by the adults around me. Such mental illness is extremely misunderstood. People assume you just don’t want to get better. But it’s not that easy to control. It requires, for starters, the right amount of medication. And, yes, I need to make an effort as well. I have to force myself to be positive, to look at the glass half-full. What people don’t get is that, for me, having a positive attitude is not as easy, or natural, as it is for others. My brain just works differently. During my dark times, being positive feels like hard work.  

Another common consequence of having Turner Syndrome is a neurological condition called NVLD (Non-verbal learning disorder). People with NVLD shine when it comes to verbal skills, but have difficulties with everything else: maths, spatial-awareness, motor and social skills. The brain just works in a different way and doesn’t process information as fast as neuro-typical people. Those with this disorder don’t always comprehend nonverbal cues such as facial expression or tone of voice. We tend to be extremely literal and obsessed with routines, which is why NVLD is often confused with Asperger’s syndrome.  We tend to focus mainly in the details and miss “the bigger picture”.

Just like TS, NVLD comes in different degrees. Mild cases are often confused with “quirkiness” “laziness” and “clumsiness”, so they may go undiagnosed. Kids with NVLD work at a different rhythm and require individual attention, also have problems concentrating for long periods of time. The teacher may constantly complain that the child “doesn’t pay attention”, “doesn’t apply himself/herself” and “gets distracted easily”. The most severe cases may require special education or home-schooling.      

I went to a regular school and studied with kids of my same age. Academically, I did pretty well. I was able to pass exams with the minimum effort. Just a couple of hours of studying got me As or a B+. No study at all got me Cs or C+. Except when it came to maths. I needed to apply myself to pass. Only once I failed that class and physics, but it was mainly because I hatted those subjects and didn’t even do the minimum effort required. The year I needed a private tutor, she just made sure I sit down to actually do my homework and study. She keep me focused.

At the university it was a different story. The university required for me to sit down and study four or 5 hours on a row, every day. That was a big challenge. Many times I was just two depressed to do so. When I studied, I usually get very restless and bored if I had to do the same thing for long periods of time. I had a lot of trouble concentrating, even with subjects I really liked. I coped with it by writing what the textbook said in a notepad using my own words, and re-writing the notes I had taken in class. The act of writing the information helped me understand it and kept me focused on the material, rather than get distracted thinking about other things.

It wasn’t easy. It doesn’t help that NVLD is often confused with lack of intelligence. One time, I went to an assistant professor who managed international student exchange programs, let’s call him Frank, and I told him that I wanted to study in the US. Frank said I was not good enough for the USA, that I would never get accepted, and that I should try studying in Peru or Mexico instead. It was so discouraging, that the incident triggered yet another period of depression and giving up. Eventually, I found out that I could have done a masters in the USA if I made an effort, but it was too late.

In the course of 10 years, I dropped out, went back to the uni, dropped out again, and went back for good. Eventually, I got my degree at the age of 29.

After graduating, I was able to go for a two-week intensive writing course in NYU, which was one of the best experiences in my life and one of my happiest times ever.  

Now I just work at a supermarket, so my job is very easy, too easy. I often find myself bored and in need of mental stimulation. However, it takes me a bit longer than others to complete a task. My biggest struggle is speed. Partly because I focus too much on details other people don’t really care about, partly because my brain doesn’t process information as fast. I’m only talking about a few extra microseconds, but it’s enough for people to mistake it with lack of brains. In reality, people with NVLD often have an IQ higher than the average.

With a bit of support and understanding, there is nothing we can’t archive. We CAN thrive in any profession (even if I personally haven’t succeeded in my chosen field).

Hence the importance of creating awareness and spreading the word.   

Mermaids Vs. whales

 I’m visiting my hometown this January, and it’ll be summer there. Summer in Mar del Plata, Argentina, only means one thing: the beach. It’s a time to get a tan and swim by the ocean (While a friend guards your property, of course. It’s Argentina). Sounds fantastic, right?

I wasn’t a big fan of the beach when I lived there, I admit. But now I live in a land of constant darkness and rain, a country where summer lasts a week, and the weather it’s never hot. No matter how many Brittons complain (and faint) those few days of 20-22*C, that’s not real heat. So, two weeks of temperatures close to 30*C sound like heaven. Except for one thing: society dictates I should have “a bikini body”.

What does “a bikini body” mean exactly? It means that only thin women, with beautiful bodies, should parade themselves wearing a bikini. The rest of us, if we dare go to the beach at all, should cover ourselves up.

An infamous gym advertisement shamed women into exercising by asking: this summer do you want to be a mermaid or a whale? Not a very cheerful thought for an overweight lady who’s planning to enjoy the beach.

When summer is near, women are expected to starve themselves or spend many hours at the gym in preparation. (Only the women. Men can prance around at the beach practically naked even if their bodies would make the late Hugo Chavez look like a male underwear model).   

This may be hard to believe now, but I spent most of my life without even thinking about weight. I was skinny without even trying. I always ate what I wanted, whenever I wanted. And when I really liked the food, I ate a lots of it: three servings of grandma’s pasta in one sitting, or enough French fries for three adults, or four empanadas, or a massive bag of popcorn and candies… I could eat a lot and still beg for more. Somehow, my body just dealt with it. I was the –Where does she put it?- girl.

Things changed somewhere in my early 20’s. Without even noticing, I put on a bit more than 30 pounds (15 kilos), without changing my habits at all.  30 pounds may not seem like a lot, but when you are 4’11 in height, even a few extra pounds make you look like a balloon. Also, sad truth, when it comes to being overweight… it’s all about distribution. A curvy body can be very sexy. Except I carry all my extra weight in my stomach, face and breast, while I have no fat where I need it: hips and butt. Definitely NOT what people call a “bikini body”.

A blood test confirmed that I have an underactive thyroid. I was properly medicated and went to the nutritionist, who put me on a very strict diet I followed rigorously. The diet was simply eating small portions of healthy food, with low-calorie soup as entrance and a no-fat no-calorie dessert. Also, healthy snacks at mid-morning and afternoon. I was never hungry, but I couldn’t eat ANYTHING I actually wanted to eat. Except once a week I was allowed to choose ONE thing I liked… I usually chose either one serving of pasta, pizza, a pastry, or a burger. (Once the extra weight is gone, the dieter graduates to three things a week).  

I also began exercising every day, using a stationary bike. I walked everywhere as well. As a result, I lost my extra weight, and a bit more, in three months. Every single one of my mom’s clients and friends asked for the number of my nutritionist. This was about the time I went to live to Colorado for five months.

During my time in the US I put on 10 pounds. Back home, I began feeling severely depressed. I felt like a felon who had been allowed out of prison for a little bit and now was back. I stopped following the nutritionist’s instructions and I stopped exercising. I put on 30 more pounds (in addition to the 10 I carried from the US).

After that, my weight fluctuated regularly from 130 pounds to 140. I never had my pre-USA body again.   

My mom and my aunt Betty fat-shamed me constantly. My mom never hid the fact that she finds my abdominal fat repulsive. One time, after I told her I wanted pork and fries for New Years’ eve dinner, she made pig noises and implied that I was a pig. Another day, we were out for lunch and she threatened to get up and leave me alone at the restaurant if I ordered a burger with fries. That controlling and manipulating attitude regarding my eating habits was constant. My aunt Betty also had, and has, a lot to say about what I eat.

Sadly, they are not the only fat-shamers.

I once had this chat while using a website to look for a date:

Me- I study social communications and work at my mom’s nail salon.

Random Guy- I think we already talked once. You are the fat girl.

Me- mmm… I think you are confusing me with somebody else.

Random Guy- No, I’m not. You sent me your pic, I know you’re fat.

Me- If you like girls who look like skeletons, that’s your problem.

Random Guy- I don’t like girls who look like skeletons, I like normal girls.

Me- I’m normal!

Random Guy- You are not.  

That’s when it really hit me: my weight was an obstacle. It didn’t just made it more difficult to get a date, it was keeping me unemployed. I noticed that most women who had the jobs I was qualified for had an ideal weight. I remembered when a classmate in highschool, a guy, told me that I’d have difficulties finding a job because no employer wants an unattractive girl, since that would put off the clients. Of course, he was a bully who was trying to hurt me. But, over the years, my battle with unemployment and having to settle for bad jobs didn’t prove him wrong.

By the way, I’m not one of those women who blames solely a medical condition for her weight. Yes, I have an underactive thyroid, and having Turner Syndrome makes it more difficult for the body to process carbs. Any average woman who ate exactly what I eat wouldn’t put on weight. However, it is also true that I enjoy eating. I eat pizza twice a week and order burger and fries when I go out. I regularly eat Mac and cheese. I try to make up for it by living mainly on weight watchers’ ready meals, yogurt, cereal bars or rice with tuna. This seems to be keeping me for putting on even more weight, but I won’t get my 2009 body unless I make even more sacrifices. I should eliminate the food I like from my diet, or limit it to once a week.

I also should exercise every day. But that seems like a boring chore. I already have a job I hate, I don’t wish to spend one hour of my life on a stationary bike, when I’d much rather write, or read.    

The cost of being ‘a Mermaid’ is so much more than I’m willing to pay.

I can hear people asking…. What about health? Oh, right… my health. Well, I have no cholesterol, no diabetes, no high blood-pressure and my heart is in perfect shape (I have an MRI as proof), so are my kidneys. I have my liver enzymes slightly elevated, but that seems to be because of my Turner Syndrome and the doctors are very unconcerned about it. I can fit perfectly in those tiny airplane seats. If any of that ever changes, we can talk about health.  

At this point, losing my extra weight would be just to look prettier, to satisfy society.

It's like a phrase I once heard: Either my life is beautiful, or I am. 

My aunt Sarita

Once a year I visited my aunt Sarita, my grandma and my cousins. They lived in the big city of Buenos Aires, capital of Argentina, while I have always been a girl from a small town by the beach. Destiny placed my mom and I four hundred kilometers away from the rest of the family.  It was during Christmas times that we visited, a time when Buenos Aires turns into an oven with humans as roasted chickens. However, I enjoyed my time there.

As I grew older, I became a disappointment for the family. I took my sweet damn time to finish the university and spent my 20's with long periods of unemployment.    

She gave me the title of “Slothful”. 

I got my college degree late in life, I admit. Nobody is more ashamed of that than me. But at least I made an effort to finish my studies. My aunt Sarita has never set a foot in an university, but she thinks she’s a judge. She gives an opinion about everything and everybody. A filterless mouth that shoots poisoned darts. Such attitude is a family trait.  

I'm fluent in two languages, by the way. Did my aunt Sarita speak two languages when she was my age? She didn’t.

Those who listen to my aunt Sarita speak think wrongly that I never worked in my thirty years of life. Never mind that I sold cosmetics for over a decade. I worked in a clothes store for a summer. I walked almost the entire town polling people for a month. An entire summer I walked the beautiful beaches of Mar del Plata selling perfumes that were more fake than than a three pesos bill. I worked in the United States for four months. There I was an employee of a nursery and a hotel maid. I had to sweet floors and clean disgusting toilets for eight hours a day. Isn’t that work?    

My resume is short. Don’t I know that? But I’m no stranger to work. I’m not unfamiliar with the torments caused by a supervisor that makes Meryll Streep’s character in “The Devil Wears Prada” look like an angel.

Another falsity forged by my aunt Sarita is the belief that I didn't work because it was not my wish.

I did everything someone looking for a job should do. I read the newspaper every day and I applied for those jobs for which I was qualified. I walked around the downtown leaving resumes in different stores (An exercise that turned out to be a complete futility). I went to job interviews. Time after time I suffered the deep deception of not receiving the fervently awaited call.    

My aunt Sarita worked her entire life without a break. She was never hit by the drama of unemployment. She can’t conceive that someone simply can’t find a suitable job. And she envies me. She envíed the fact that, even though I didn't work, my life was better than hers. It generates spite inside her the fact that I didn't need to work. I looked for work because I wanted to. I had everything I needed. Big house. Expensive clothes. And I even traveled every now and then.

My aunt Sarita, who worked her ass off her whole life, owns a tiny apartment. Was it the result of her hard work? No. She got it thanks to an inheritance, and a loan. Besides, in her hour of need, she got help from her sisters. However, she thought she had the right to criticize everything I got without effort.      

In the family table, she compared me with her daughter, My cousin Perfecta. 

Perfecta got a college degree while working hard, for my aunt Sarita never gave her anything, not even a subway pass. Aunt Sarita didn’t have the means to help her. It hurt her watching my mother take the burden off my back. It reminded her that she couldn’t do anything for Perfecta. And that must have hurt.

Behind a bully there is often insecurity, low self-esteem and pain.