Thanksgiving for Americans is tomorrow, and it's always been a bit of a strange holiday for me. There's always the normal stuff: food, family, and watching at least a little bit of the Macy's Thanksgiving Day Parade on TV. But... Thanksgiving has always been a bit different for me, because I literally would not be here without it.
Since I was a little girl, I knew that I was descended from one of the Mayflower Pilgrims. Our genealogy is well-documented, and I grew up fascinated with my father's copy of the Mayflower Compact and all the information about my ancestors that came along with the book on the first four generations of that family in America. My 9th great-grandfather was one of the few who survived the first harsh New England winter; around half of the original passengers died. Not only did he survive, but he went on to have... more children than I could ever fathom having, went from being an indentured-servant to a well-off landowner, and died when he was in his eighties. None of that would have been possible without the help the Pilgrims received from the Native Americans that permitted them to get through another winter.
A lot of people like to talk about how Thanksgiving is a BS holiday, given the many conflicts between the Europeans and Native Americans that came after. As far as I'm concerned, those people are missing the point. No matter what came after, the First Thanksgiving was the result of people who could hardly be more different coming together, working together, and tolerating each other. What's more, the Pilgrims expressed that they were grateful for it. In a nation built on personal freedoms, it's easy for us to get caught up in idealogical battles and forget what we can accomplish when we set aside our differences and prejudices and simply try our best to tolerate each other, whether or not we actually accept each other.
For me, Thanksgiving has always been about the virtue of tolerance, of being grateful we live in a society where people are different, because when we pressure ourselves to get along, we can accomplish great things. The fate of our nation depends on our tolerance of differing points of view, of realizing that we all have something to bring to the table, if everyone can be respectful enough to let us.
My family has never been the type to go around the dinner table and have everyone say what we're thankful for. That isn't because we're not thankful, it's because we're hyperaware that we have so much to be thankful for, including the fact that we're even here to celebrate the holiday at all. This year, I discovered that my family is actually descended from another Mayflower Pilgrim, a few generations down the line, one of my 9th great-grandfather's descendants (who was also a great-grandfather of mine) married a descendant of another man who came over on the Mayflower, and I'm descended from their children. This wasn't unexpected, since most of the families in the area married each other at some point or another, but now I know there wasn't just one person that needed to survive that second winter for me to be here, but two. I am thankful I was given the opportunity to be alive, to be on this earth and breathing. I've been through a lot of ugly stuff, but I'm still here. I'm still breathing; I'm still living. I don't need to "count my blessings" - I'm aware they're numerous. And isn't that the point? To realize that no matter how hard things may be, we still have hope, because we're here, aren't we?
Happy Thanksgiving to all of the Americans celebrating tomorrow - and a Happy Hanukkah to those who begin celebrating it tonight!
Wednesday, November 27, 2013
Saturday, November 16, 2013
A Little Piece of My Heart
It's been a few weeks since I last blogged; unfortunately, I got caught up in school stuff for about a week and then came down with an illness that I've been calling the Plague. I don't know what happened, but a week ago I started feeling horrible - my ears hurt, my throat hurt, I lost my voice, my sinuses were clogged like no one's business, I had a really bad headache, my muscles hurt about 10x more than they usually do, I kept getting chills, and I even ran a slight fever (which is insane, because I've only ran a fever once since I was two, despite chronic bronchitis, sinusitis, and ear infections). After a few days, I thought I was getting better. Then, I woke up and couldn't breathe - whatever it was moved into my chest and gave me a horrendous cough on top of everything else. It's been horrible, and unfortunately, no matter what I do, nothing seems to be killing whatever this is! I'm on antibiotics, taking my allergy medicine with decongestant as often as is safe, I'm on steriodal nasal spray, I'm taking my asthma medicine and my rescue inhaler every four hours, I feel like I'm drinking my weight in water, I cut out pretty much all dairy from my diet, I've been resting and really not doing anything... so why do I still feel so disgusting? I don't know. Moving on...
In the past few days, I've been thinking a lot about something that always has made me feel a little bit out of place living on Long Island in suburban New York, and that's my family's non-obvious country roots. On my father's side of the family, I'm descended from a long line of people who only ever knew wide-open spaces, the kind of quiet and solitude interupted only by a bubbling stream or the occasional wandering bear, and simple living, consisting mainly of working to live and going to church. I have never, ever been a country girl, and I never will be, but part of my heart will always be tied to those roots in a way I can't seem to put into words.
Most people in my geographic region see nature in parks and zoos; they keep a safe distance from nature even while they're experiencing it. They don't know what it feels like to go swimming in a lake and have a turtle shoot out from underfoot or see tiny fish flitting through a stream. They don't know what it's like to breathe fresh mountain air in the morning, to wake up to a bear trying to get into the birdfeeder or a group of deer grazing behind the house. The story of how your family cleared some land in the mountains and built their own house on it from the ground up - completely by themselves - is something they can hardly believe. They don't understand why anyone would have a shotgun to defend their family from animals, because wolves, coyotes, and bears are something they've never come close to seeing in the wild.
People in my area don't know what it's like not to have basic things instantly available to them. They have no idea what it's like to drive through the mountains and the fields to reach town and get the mail - and they don't understand how a post office, a general store, and a couple of old houses can be considered "town." They don't understand why someone would need to drive to a neighbor's house, because they can't fathom their nearest neighbor being well over a mile away. They don't know what it's like to have to drive forty-five minutes to a supermarket or an hour to the family doctor's office.
When I'm explaining to friends and acquaintances that my father is a hunter who has two hunting dogs, they're usually intrigued. They generally only think of dogs as companions, and they think of guns as something for police. They usually ask how the dogs know what to do, what my father does when he goes out east to train them each week. Sometimes they ask if the dogs are vicious, which is funny, because they aren't at all. My dogs are extremely friendly (usually too friendly!) and wouldn't hurt a fly; there isn't a mean bone in their bodies.
Lots of people look at me strangely if I tell them about raising pheasant chicks, and/or how we actually have a pheasant pen in my backyard. They have no idea that there are actually codes regulating these things or that my father actually had to get a license to be able to have them. They assume we get baby chicks from somewhere and then feed them up; they're in disbelief when I tell them how we keep one rooster and several hens, and then when mating season hits, we collect the eggs and put some of them in an incubator. They get turned several times a day, and after a certain amount of days, they all start hatching at once. It's a pretty amazing thing to watch baby chicks finally push their way out of the shell, all wet and tiny and exhausted from pecking their way out. It's also pretty funny holding the last two to get out in your hands to keep them warm while the others are transferred to a brooder, a big refrigerator-sized box with a heat lamp, water, and food. Coming home one day and realizing that several birds are missing from the brooder is a nerve-wracking experience, and it's a sure sign that they're all learning to fly. It's funny going around and finding them all with one of the dogs on a leash - they'll end up behind a couch, comfortably nestled in a pair of your dirty socks, or perched on the top of a lampshade.
These types of things are something I wonder if my children will someday get to experience, provided I'm someday blessed enough to have them. I wonder what "normal" to them will be if they don't, if I'll always feel like they missed out on something. I suppose children will always grow up in a different world than their parents did; maybe that's why children and parents have so much tension with each other at times - they just can't understand.
Is there a part of your heart that people around you just don't seem to get?
In the past few days, I've been thinking a lot about something that always has made me feel a little bit out of place living on Long Island in suburban New York, and that's my family's non-obvious country roots. On my father's side of the family, I'm descended from a long line of people who only ever knew wide-open spaces, the kind of quiet and solitude interupted only by a bubbling stream or the occasional wandering bear, and simple living, consisting mainly of working to live and going to church. I have never, ever been a country girl, and I never will be, but part of my heart will always be tied to those roots in a way I can't seem to put into words.
 |
| Mountains and fields on the way to my grandparents' former home in Massachusetts |
Most people in my geographic region see nature in parks and zoos; they keep a safe distance from nature even while they're experiencing it. They don't know what it feels like to go swimming in a lake and have a turtle shoot out from underfoot or see tiny fish flitting through a stream. They don't know what it's like to breathe fresh mountain air in the morning, to wake up to a bear trying to get into the birdfeeder or a group of deer grazing behind the house. The story of how your family cleared some land in the mountains and built their own house on it from the ground up - completely by themselves - is something they can hardly believe. They don't understand why anyone would have a shotgun to defend their family from animals, because wolves, coyotes, and bears are something they've never come close to seeing in the wild.
People in my area don't know what it's like not to have basic things instantly available to them. They have no idea what it's like to drive through the mountains and the fields to reach town and get the mail - and they don't understand how a post office, a general store, and a couple of old houses can be considered "town." They don't understand why someone would need to drive to a neighbor's house, because they can't fathom their nearest neighbor being well over a mile away. They don't know what it's like to have to drive forty-five minutes to a supermarket or an hour to the family doctor's office.
 |
| A younger me at the Chickley River in Massachusetts, after crossing |
When I'm explaining to friends and acquaintances that my father is a hunter who has two hunting dogs, they're usually intrigued. They generally only think of dogs as companions, and they think of guns as something for police. They usually ask how the dogs know what to do, what my father does when he goes out east to train them each week. Sometimes they ask if the dogs are vicious, which is funny, because they aren't at all. My dogs are extremely friendly (usually too friendly!) and wouldn't hurt a fly; there isn't a mean bone in their bodies.
Lots of people look at me strangely if I tell them about raising pheasant chicks, and/or how we actually have a pheasant pen in my backyard. They have no idea that there are actually codes regulating these things or that my father actually had to get a license to be able to have them. They assume we get baby chicks from somewhere and then feed them up; they're in disbelief when I tell them how we keep one rooster and several hens, and then when mating season hits, we collect the eggs and put some of them in an incubator. They get turned several times a day, and after a certain amount of days, they all start hatching at once. It's a pretty amazing thing to watch baby chicks finally push their way out of the shell, all wet and tiny and exhausted from pecking their way out. It's also pretty funny holding the last two to get out in your hands to keep them warm while the others are transferred to a brooder, a big refrigerator-sized box with a heat lamp, water, and food. Coming home one day and realizing that several birds are missing from the brooder is a nerve-wracking experience, and it's a sure sign that they're all learning to fly. It's funny going around and finding them all with one of the dogs on a leash - they'll end up behind a couch, comfortably nestled in a pair of your dirty socks, or perched on the top of a lampshade.
These types of things are something I wonder if my children will someday get to experience, provided I'm someday blessed enough to have them. I wonder what "normal" to them will be if they don't, if I'll always feel like they missed out on something. I suppose children will always grow up in a different world than their parents did; maybe that's why children and parents have so much tension with each other at times - they just can't understand.
Is there a part of your heart that people around you just don't seem to get?
Monday, October 21, 2013
Finding "Home"
I think most people have heard the quote, "Home is where the heart is." Since it's craft fair season, I've been seeing it a lot on homemade items for sale - dish towels, wooden plaques, wall hangings, etc. The emphasis is clearly on home as a place, and it makes me wonder if "home," for most people, is a place. For me, "home" is sometimes a place, but sometimes it isn't. Sometimes, home for me is a person - or a feeling.
This week, October 20th to 26th, makes me dwell on the concept of home. If my Nana was still alive, she would have turned ninety-five this week, and this week also marks the nineteenth anniversary of her death. Nineteen years. How have nineteen years passed since she died? It seems absurd. She still has such an active presence in my life, yet she's been gone nineteen years already. Where did the time go?
My Nana died when I was five years old. She was a huge part of my upbringing from the time I was born; I saw her almost every day, I was constantly sleeping over her house, and in many ways, she felt more like my third parent than my grandmother. All my early memories are of her; I have almost none of my parents. My parents and I lived with her for the first two years of my life, and then while my parents were at work or needed some time for themselves as a couple, she was the one who watched me. When I was an infant, she was one of people who got up at night when I cried. From the day my mother brought me home from the hospital until she went to the hospital days before she died, she soothed me. She fed me, she changed my diapers, she bathed me, and she tucked me in at night. She held me, she played with me, and she helped me learn to walk and talk. She took me everywhere - to the park, to the docks, to my friend's house... had she ever learned to drive, she probably would have taken me to school. She loved me to pieces, as I loved her.
When she died, the one thing I never did was blame her. I felt absolutely shattered, but I knew that if she had the choice, she wouldn't have left me then. I learned, at a very early age, that even when people want to be there for you and say they'll never leave, sometimes they don't have a choice. It doesn't mean they love you any less. It doesn't mean they've abandoned you. And the one thing I've constantly thought since then is that even though in a way she left, she's never really ever left me at all.
My home was her. My home was a person, the person who made me feel safe and protected and loved. It wasn't a building, it was her. When she died, I craved a place to feel close to her. My parents and I used to drive past her house every holiday on the way to or from my aunts' house. It was almost like visiting her grave, since she had chosen to be cremated and have her ashes scattered. For the longest time, I thought it was the place that felt like home, but it isn't so much as the place itself as it is the feelings it allows me to bring forth. It's painful to think about loss, and being in that place helps me get home; home to her and those feelings of being safe and protected and loved.
Over the years, my home has expanded - it's been places, mostly, and sometimes feelings. The feeling of freedom that college provided me with and my dorm room were my home for a few years. My father's house has been my home, on and off - or rather, my bedroom has been, maybe even just my bed, at times. My Nana, to this day, is still a part of my home. When people say you can't go home again, I think they're wrong - sometimes you can. Some homes will always be there for you to go back to.
It took my boyfriend saying that his home wasn't a place, it was a person, for me to finally understand why I didn't feel like my house was my home. It took him telling me that I was his home for me to realize that he has become a huge part of mine. When I was around my Nana, she made me feel like I could do anything; I didn't have to fear the world. I knew she'd be right there to help me back up if I fell, and she'd never love me less for trying. He makes me feel, in many respects, the same way. Around him, I can do things I never believed I would be able to, because I finally have the ability to let myself. He's reminded me that I have a home, that I don't need a place. And all I have to do is look into my heart, because the people and feelings that are my home can always be found there. I can be home anywhere, as long as I remember my heart.
What is "home" for you?
This week, October 20th to 26th, makes me dwell on the concept of home. If my Nana was still alive, she would have turned ninety-five this week, and this week also marks the nineteenth anniversary of her death. Nineteen years. How have nineteen years passed since she died? It seems absurd. She still has such an active presence in my life, yet she's been gone nineteen years already. Where did the time go?
My Nana died when I was five years old. She was a huge part of my upbringing from the time I was born; I saw her almost every day, I was constantly sleeping over her house, and in many ways, she felt more like my third parent than my grandmother. All my early memories are of her; I have almost none of my parents. My parents and I lived with her for the first two years of my life, and then while my parents were at work or needed some time for themselves as a couple, she was the one who watched me. When I was an infant, she was one of people who got up at night when I cried. From the day my mother brought me home from the hospital until she went to the hospital days before she died, she soothed me. She fed me, she changed my diapers, she bathed me, and she tucked me in at night. She held me, she played with me, and she helped me learn to walk and talk. She took me everywhere - to the park, to the docks, to my friend's house... had she ever learned to drive, she probably would have taken me to school. She loved me to pieces, as I loved her.
When she died, the one thing I never did was blame her. I felt absolutely shattered, but I knew that if she had the choice, she wouldn't have left me then. I learned, at a very early age, that even when people want to be there for you and say they'll never leave, sometimes they don't have a choice. It doesn't mean they love you any less. It doesn't mean they've abandoned you. And the one thing I've constantly thought since then is that even though in a way she left, she's never really ever left me at all.
My home was her. My home was a person, the person who made me feel safe and protected and loved. It wasn't a building, it was her. When she died, I craved a place to feel close to her. My parents and I used to drive past her house every holiday on the way to or from my aunts' house. It was almost like visiting her grave, since she had chosen to be cremated and have her ashes scattered. For the longest time, I thought it was the place that felt like home, but it isn't so much as the place itself as it is the feelings it allows me to bring forth. It's painful to think about loss, and being in that place helps me get home; home to her and those feelings of being safe and protected and loved.
Over the years, my home has expanded - it's been places, mostly, and sometimes feelings. The feeling of freedom that college provided me with and my dorm room were my home for a few years. My father's house has been my home, on and off - or rather, my bedroom has been, maybe even just my bed, at times. My Nana, to this day, is still a part of my home. When people say you can't go home again, I think they're wrong - sometimes you can. Some homes will always be there for you to go back to.
It took my boyfriend saying that his home wasn't a place, it was a person, for me to finally understand why I didn't feel like my house was my home. It took him telling me that I was his home for me to realize that he has become a huge part of mine. When I was around my Nana, she made me feel like I could do anything; I didn't have to fear the world. I knew she'd be right there to help me back up if I fell, and she'd never love me less for trying. He makes me feel, in many respects, the same way. Around him, I can do things I never believed I would be able to, because I finally have the ability to let myself. He's reminded me that I have a home, that I don't need a place. And all I have to do is look into my heart, because the people and feelings that are my home can always be found there. I can be home anywhere, as long as I remember my heart.
What is "home" for you?
Tuesday, October 8, 2013
Unhappy Birthday to You
Last Saturday, I turned 24. It didn't feel much like a birthday, in part because for the first time I wasn't around any of my family members, and partially because what was supposed to be a lovely day out was ruined by the ignorance of others about invisible/hidden disabilities.
As I mentioned in my last post, I have Ehlers-Danlos Syndrome. It manifests itself in various ways throughout my body, but currently, my most severe symptoms have to do with my joints. Just about all of my moveable joints sublux and/or dislocate on a regular basis; I sublux almost constantly during the day, and I usually experience dislocations a few times a week. None of my joints are in great condition, but my ankles are significantly worse than my other joints. I wear braces on them daily, which I usually cover with pants.
The main reason I choose to cover my braces is to avoid drawing attention to myself. I'm the type of person who likes to try and fly under the radar; I HATE it when I get attention called to me. It makes me really uncomfortable. Most of that stems from growing up undiagnosed. As a child and a teenager, I was constantly injured. My injuries never healed in the normal amount of time, and that caused people to notice me - negatively. Doctors, teachers, classmates, and even friends and family members constantly questioned me. Doctors wrote me off as a hypochondriac when I insisted I still had a ton of pain and that physical therapy wasn't doing anything for me. Teachers gave me a hard time about affording me the accomodations I'd been approved for, giving me a hard time about things like getting me photocopies of the notes because I couldn't write. I found out later they discussed me openly in the staff room, insisting I was just, "Being a pain in the ass." Classmates made no secret about their disbelief - even though I wasn't allowed to carry things, almost no one was willing to volunteer to carry my bag to my next class. A couple people went as far, in the early days of AIM, as making a fake username and harassing me, telling me I wanted attention, that I was a faker and a liar, that no one would ever love me, that no one liked me, that I was good for nothing. My friends had a hard time believing me, as did my family. They never knew me to be a liar, but the sort of things happening to me were things they believed didn't happen to people - or only happened to people with a known genetic condition.
In some ways, other people treating me the way they did was more disabling than any of my injuries. I learned to hide myself away, hide the pain, hide the suffering. It was very unhealthy, but that's how I coped.
For my birthday, my boyfriend wanted to do something he thought would make me really happy, and he searched for months to find us tickets for a Broadway show I wanted to see. I was so excited, and on the day of my birthday, we headed into NYC set on having a lovely day. We got up to the theater, got our seats (second row!), and everything was going wonderfully... until I was harassed three different times, by three different ushers, because my disability is hidden. I was on line for the handicapped restroom, since the other bathrooms are up or down several stairs, and with my ankles, I can't do stairs. I got stared at. I got glared at. I got told this restroom was not for my use. I was told the bathrooms for my use were upstairs or downstairs. I was treated with disbelief. I was targeted, because I look young and vital, and I choose to cover my braces so that people don't stare at me everywhere I go.
After the third usher approached me, she tried to explain that the policy of questioning people on line like me was to preserve my use of the restroom, that the policy was in place for my own good. I responded, through tears, that when a policy unfairly targets and harasses the people it's trying to protect, it's obviously not working, and it harms people that are already dealing with enough. No one has the right to judge me - or anyone - based on my outward appearance.
Many, many disabilities are hidden or invisible. People who are disabled don't like being stared at, and those of us who can mask our disabilities often choose to, because we'd rather be seen as people before we're seen as disabled people. This is something that people need to realize. People with hidden or invisible disabilities are already suffering enough, the last thing we need is someone harassing us "for our own good." What we need is people that are compassionate and understanding, who are educated enough to know that just because a person isn't in a wheelchair doesn't mean they're not disabled. Disabilities, like people, come in all shapes and sizes, and appearances can be deceiving.
My experiences - and ruined birthday - could have easily been prevented, had the staff members not been so quick to judge, so uneducated about disabilities, and so arrogant. I told as much to the house manager, who encouraged me to write to the organization that owns the theater, offered me free tickets to come back, and said she'd speak to the staff. It was a nice offer, to be sure, but in order to take it, because I am disabled, there are so many complications:
As I mentioned in my last post, I have Ehlers-Danlos Syndrome. It manifests itself in various ways throughout my body, but currently, my most severe symptoms have to do with my joints. Just about all of my moveable joints sublux and/or dislocate on a regular basis; I sublux almost constantly during the day, and I usually experience dislocations a few times a week. None of my joints are in great condition, but my ankles are significantly worse than my other joints. I wear braces on them daily, which I usually cover with pants.
The main reason I choose to cover my braces is to avoid drawing attention to myself. I'm the type of person who likes to try and fly under the radar; I HATE it when I get attention called to me. It makes me really uncomfortable. Most of that stems from growing up undiagnosed. As a child and a teenager, I was constantly injured. My injuries never healed in the normal amount of time, and that caused people to notice me - negatively. Doctors, teachers, classmates, and even friends and family members constantly questioned me. Doctors wrote me off as a hypochondriac when I insisted I still had a ton of pain and that physical therapy wasn't doing anything for me. Teachers gave me a hard time about affording me the accomodations I'd been approved for, giving me a hard time about things like getting me photocopies of the notes because I couldn't write. I found out later they discussed me openly in the staff room, insisting I was just, "Being a pain in the ass." Classmates made no secret about their disbelief - even though I wasn't allowed to carry things, almost no one was willing to volunteer to carry my bag to my next class. A couple people went as far, in the early days of AIM, as making a fake username and harassing me, telling me I wanted attention, that I was a faker and a liar, that no one would ever love me, that no one liked me, that I was good for nothing. My friends had a hard time believing me, as did my family. They never knew me to be a liar, but the sort of things happening to me were things they believed didn't happen to people - or only happened to people with a known genetic condition.
In some ways, other people treating me the way they did was more disabling than any of my injuries. I learned to hide myself away, hide the pain, hide the suffering. It was very unhealthy, but that's how I coped.
For my birthday, my boyfriend wanted to do something he thought would make me really happy, and he searched for months to find us tickets for a Broadway show I wanted to see. I was so excited, and on the day of my birthday, we headed into NYC set on having a lovely day. We got up to the theater, got our seats (second row!), and everything was going wonderfully... until I was harassed three different times, by three different ushers, because my disability is hidden. I was on line for the handicapped restroom, since the other bathrooms are up or down several stairs, and with my ankles, I can't do stairs. I got stared at. I got glared at. I got told this restroom was not for my use. I was told the bathrooms for my use were upstairs or downstairs. I was treated with disbelief. I was targeted, because I look young and vital, and I choose to cover my braces so that people don't stare at me everywhere I go.
After the third usher approached me, she tried to explain that the policy of questioning people on line like me was to preserve my use of the restroom, that the policy was in place for my own good. I responded, through tears, that when a policy unfairly targets and harasses the people it's trying to protect, it's obviously not working, and it harms people that are already dealing with enough. No one has the right to judge me - or anyone - based on my outward appearance.
Many, many disabilities are hidden or invisible. People who are disabled don't like being stared at, and those of us who can mask our disabilities often choose to, because we'd rather be seen as people before we're seen as disabled people. This is something that people need to realize. People with hidden or invisible disabilities are already suffering enough, the last thing we need is someone harassing us "for our own good." What we need is people that are compassionate and understanding, who are educated enough to know that just because a person isn't in a wheelchair doesn't mean they're not disabled. Disabilities, like people, come in all shapes and sizes, and appearances can be deceiving.
My experiences - and ruined birthday - could have easily been prevented, had the staff members not been so quick to judge, so uneducated about disabilities, and so arrogant. I told as much to the house manager, who encouraged me to write to the organization that owns the theater, offered me free tickets to come back, and said she'd speak to the staff. It was a nice offer, to be sure, but in order to take it, because I am disabled, there are so many complications:
- I'd have to take a train into the city again. Trains cost money, to the tune of $50 for two round-trip tickets. Aside from the fact I'm a law student with no money, trains are difficult for me to travel on because of my joints. The jostling causes they to sublux and/or dislocate the whole ride there, and the whole ride back.
- I'd have to come up with the money to take cabs up and back to the theater again. Like I said, I'm a broke law student. Subways and walking, which are great options for most people, aren't an option for me.
- I'd have to find the time to actually GO to another show. I'm in class Monday through Thursday, from the morning through the evening every day but Thursday. If there are even shows on Thursdays, I'd have to try to take a train in during rush hour, which usually means there's zero seating left by the time I'd board. I can't stand for an hour train ride, because of my disability. On Friday, I work the entire day. On Saturdays, I usually have some time, provided I'm not cleaning, doing laundry, or running errands, i.e. doing all the things I don't have time for during the week. On Sundays, I spend the entire day doing homework to get ready for my next marathon week.
Friday, September 27, 2013
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:
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.
Wednesday, September 11, 2013
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?
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?
Monday, September 2, 2013
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.
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.
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.
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.
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.
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| 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.
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| "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.
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| 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.
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| On the water at Belmont Lake State Park in Babylon |
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| 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.
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| 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.
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| 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?
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