It's Official: I'm a Zebra

Some of you may have noticed that I haven't been posting too much lately. Part of that is due to law school, which can swallow my life whole for periods of time, but part of it is also because I'd been busy preparing for my appointment with a geneticist. I had scheduled it nearly six months ago after searching for around three years for a doctor who was educated on the types of issues I was having, and yesterday, September 26th, 2012, was the big day.

At 7:30am yesterday morning, my boyfriend and I woke up, threw on clothes, grabbed my medical records, and boarded the train that would take us into New York City. We got off at Penn Station, grabbed a cab, and headed about forty blocks uptown to where I was seeing the doctor. We waited anxiously in the waiting room, I had some baseline measurements taken by a nurse, and then we were taken in to see the doctor. After almost two hours of extensively questioning about my medical history, my current health status, and my family and their health, plus a lengthy physical exam, the doctor told me what I'd suspected for at least a few years:

I have Ehlers-Danlos Syndrome.

 

It's weird for me to say. I have so many emotions about it right now, some which I think I was prepared for and some I wasn't. After years of suffering, I expected the news to come as a relief. I wanted to know; I wanted to finally be sure. I wanted an answer to the question I'd long been asking myself; I wanted to know what was wrong with me. And I got my answer.

 

In many ways, it is a relief. I'm an extremely honest person, but my symptoms, over the years, have led to people constantly questioning me, be they friends, family members, teachers, or others. Hardly anyone believed me when over and over again, I injured my joints, and over and over again, they failed to heal within any remotely normal time frame. I was cyber-bullied by classmates who thought I was faking it for attention, and I was given a hard time by teachers who didn't want to bother affording me the accommodations I needed. Doctors periodically wrote me off as overly emotional and dramatic, clearly just a hypochondriac.

 

I wasn't a hypochondriac. I didn't want attention. I wanted to heal. I wanted doctors to know what was wrong right away and be able to fix it. A lot of the time, I felt hopeless and extremely depressed. I wondered if everyone else was right, if I was just that crazy girl who thinks she's hurt all the time. I tried not to allow myself to get into that mind frame, and I constantly fought to find someone who would understand, to keep my head above the water until someone could figure out what the hell was going on with my body, why it was betraying me in the ways it had.

 

There's a saying, apparently commonly taught to medical students: "When you hear hoof beats, expect horses, not zebras." It's meant to serve as a reminder that there are common, simple causes for a lot of symptoms; that rarer diseases and conditions are rarer and generally shouldn't be given a lot of thought until all other "normal" causes are ruled out. In many ways, that's true, but at the same time, I wish more doctors would remember that "zebras" do exist. There have been so many signs that I was not the typical medical patient - that I had something distinctly abnormal going on - since before I was even born. Growing up, I had so many medical problems, but because they didn't result in death or extensive hospitalization, I was written off by most in the medical community. I've encountered a slew of doctors that have never even heard of Ehlers-Danlos Syndrome for every one that has believed me, and I have suffered immensely for it. If I could go back in time and educate my doctors about the condition, I probably could have avoided - or at least delayed - the exhaustion of my ankles. I could have limited my involvement in activities that were more likely to be detrimental to my health only because of the condition. There are so many could-have-beens that it's hard not to think about.

 

However, in the immortal words of J.K. Rowling, "It does not do to dwell on dreams and forget to live." This is my life. It isn't perfect, but in so many ways, it is still beautiful and amazing and all my own. It is, at the moment, enough.

 

I will be writing more about my experiences with and symptoms of Ehlers-Danlos Syndrome in the future, but at the moment, I'm taking some time to process my diagnosis. Additionally, I will at some point be undergoing further testing in order to determine which type of EDS I have. The Hypermobility type is most likely, but it's possible I have Classical or Vascular, though Vascular is definitely less likely. This will not turn into an EDS-exclusive blog, if you're worried, though having EDS will undoubtedly influence many of my posts.



Still Processing

At the moment, I should really be doing my reading for Trusts and Estates, but as it's been a day full of a whirlwind of emotions for me, I wanted to take some time out to talk about what today is to me.

Twelve years ago, as I was sitting in my morning homeroom class, I had no idea that my life was about to change. It was, for all intents and purposes, a routine, sunny day that would be spent in class; the school year had started only recently, and I probably wasn't thinking about anything in particular. As the day drew on, it became clear that something was amiss - there was an announcement made over the loudspeaker that teachers were not to turn on classroom TVs under any circumstances, and the phones started ringing in all the classrooms, calling to let lots of students know that their parents had arrived to pick them up. I found out some time around lunch what had happened.

Today, twelve years after that day, I'm still trying to process what happened to me and the people around me because of what we bore witness to. Every year there are memorials held, moments of silence conducted, news articles written, and speeches made about remembering, about the importance of not forgetting what happened to us - as individuals, as people, as a nation. Frankly, this confuses me, because even though I was fortunate enough not to have been in Manhattan that day or to have lost anyone close to me as a result of the terrorist attack, I still lost a lot that day - and part of me would do anything to forget.

I think about the events of September 11, 2001 almost every day, sometimes multiple times daily. I feel uneasy every time I see the a digital clock that reading 9:11. I live near a small, private airport, as well as within 50 miles of two major airports, and I get the same feeling every time I see or hear a plane. I constantly wonder if it's flying too low, if there's a chance it could crash into a home or a business or a landmark or the cars near and around me on the highway. When I'm inside my house and hear the roaring of an airplane engine, I feel a pressing need to look out the window and make sure everything's okay - that I am still safe, that it isn't about to rip through my window. On the anniversary of the attacks, every year, I feel guilty. I feel like if I don't say anything about it, if I go about my daily business, if I allow it to be a normal day, I am somehow disrespecting the horrors suffered by others as a result of those events. I feel like I can't let myself be happy today, because somehow that would mean I'm forgetting, and forgetting isn't allowed.

For the first time since the events of September 11th, I'm in one of the boroughs of New York City on the anniversary of that day. I go to school here now, and I can't just miss class, but today has been... especially stressful. On the drive in, all I could think about was if it was really safe to be driving into the city. I worried about the risk of repeat attacks, and what I would do if the local county borders were closed, like some were on that day. I wondered about the advisability of studying on the floor of the library I prefer today - it's several floors up, and I wonder if that's safe; if I could get downstairs fast enough in the case of an emergency. I feel like there's almost a haze over reality today, like something crazy could happen, and I wouldn't be at all surprised. I am on edge.

I had several relatives in NYC when the attacks took place. Each and every time we've gathered as a family since then, they talk about their experiences. It's like they're stuck in an infinite loop of repetition - they can't stop talking about it, and they can't really talk about anything else. I've heard a hundred times about how transportation was shut down. I've heard a hundred times that the city was in a panic, because no one knew what was happening. I've heard a hundred times that my aunt, who was home after emergency eye surgery, though she was dreaming when she first saw the tower on the news, how she later found out that the building she worked in, WTC 7, was destroyed after being hit from the debris flying off of WTC 1 and 2. I've heard a hundred times about my aunt's partner arriving home late that evening, having walked over the Brooklyn Bridge covered in ash, having witnessed people jumping to their death from the towers, choosing not to spend their last seconds huddled in a death trap, knowing their fate had been sealed.

I would do anything to be able to forget 9/11. I don't want to remember the horrors, I don't want to remember the feelings of vulnerability, I don't want to remember the sick, twisted events that took away whatever remained of my childhood, I don't want to remember the stress I still feel every day, on a subconscious level, because of those events. I just don't. Is that so bad?

Summer Adventures

Happy Labor Day! The unofficial end of summer is bittersweet; I love the fall (I was an autumn baby) and all it brings, but this summer has been amazing, so I can't help but be a little sad to see it go.

For a while now, I have had the worst case of wanderlust. I want to go everywhere and see everything; I want to explore the world. However, because of some medical issues and finances (law school is expensive), I can't really go very far from home. I'm hoping that'll change in the future, but this summer, I needed a way to sate my lust. As it turns out, local adventuring was the way to go.

Bayard Cutting Arboretum in Great River

 

Long Island, where I live, is rich in history, culture, and surprisingly affordable things to do. The surrounding area is great too; it just tends to be a lot more expensive, especially in terms of travel costs. (Parking costs in NYC can be really high, and the last time I took the train into Manhattan about six months ago, it was $16 for a round-trip ticket. That doesn't include transportation once you get into the City, admission fees, or food costs, if you spend the day.) I decided to devote my summer to finding mostly free and cheap (and local) things for my boyfriend and I to do, and I think I did pretty well. This summer, we went all over.

"Butterfly Zoo"at the Main Street Nursery in Huntington

 

Our adventures started on Memorial Day with the Jones Beach Air Show. If you've never seen an air show before, it's basically a bunch of planes doing lots of different types of stunts - flying in formation, skywriting, flying upside-down, etc. It's the type of thing you don't normally see outside of military movies. This air show had both civilian and military people in the air, but unfortunately, no one from the U.S. military this year due to spending cuts.

 

Air Show at Jones Beach

 

Over the 4th of July weekend, besides going to the beach, we went to Belmont Lake State Park for paddle-boating. It was gorgeous out on the lake, and I had a lot of fun. Paddle-boating is particularly awesome for me because it's something I can do even with my crazy joints; the way the boat is structured, it offloads the pressure on my ankles. Thankfully, the boat's also really simple to guide through the water.
 

On the water at Belmont Lake State Park in Babylon


One of my favorite trips was out for lunch on the Nautical Mile in Freeport. We went to a really dive-y place known as Jeremy's Ale House, and when I say dive-y, I mean there were bras hanging from the ceiling and everything was served on paper or styrofoam. But the food was out of this world! Like, seriously, I'm still craving the Cajun breaded fried shrimp we got; it was hands down THE best shrimp I'd ever had. The Manhattan clam chowder was phenomenal, as was the fried calamari legs starter that we got - every piece was perfectly cooked. The food was extremely reasonably priced to boot, and we're definitely going back soon.

Fried shrimp OF MY DREAMS! from Jeremy's Ale House in Freeport

I also headed off the Island into the Bronx for the day a few weeks ago, to explore the Bronx Zoo. I've been going there since I was a little girl; my aunts used to take my sister and I out there for the day. We always got home exhausted from all of the walking, but since I can no longer walk those sorts of distances, I rented a wheelchair after we arrived. We spent a lot of time at the tiger exhibit and got to see a snow leopard the zoo is borrowing from zoo in Pakistan, plus (obviously) a whole bunch of other animals. My favorite animal at the zoo didn't seem to be feeling very social that day, unfortunately. He was hiding so that you couldn't really see his face, but... I still love red pandas.

C.V. Starr Tiger Valley at the Bronx Zoo

Other places we went this summer included Robert Moses State Park (where we were surprised by a deer running across the beach at sunset), Crab Meadow Beach (for a first birthday party), Bayard Cutting Arboretum (where we saw a huge snapping turtle and baby swans), Heckscher State Park, Clark Botanical Gardens, the Hicksville Gregory Museum (which had dinosaur eggs and lots of fossils), and the Gibson-Mack-Holt House (where I crazily found my father's original newborn picture - I had no idea they got the pictures from the hospital he was born in).

On Saturday, I rounded out my summer by hitting the Labor Day Sales at a local outlet center... which just happened to be holding a free summer concert series. We decided to stay for the last concert, which featured Owl City.

Owl City performing a free Labor Day Weekend concert in Deer Park

 

All in all, it's been a fantastic summer. What did you do/where did you go this summer? Did you get to travel, either just locally or far, far away?