A Little Bit of My EDS Reality

One of the reasons I initially decided to start a blog was to be able to give my own perspective on my medical issues. I had suspected there was something odd about me medically for years before I was finally diagnosed in September with Ehlers-Danlos Syndrome, but in many ways, I didn't realize how abnormal some of my symptoms were. I didn't even realize they were symptoms! Since September, I've learned a lot about myself and the world around me, and in some ways, life makes much more sense than it ever did.

Most people I've come into contact with have never even heard of EDS. The people closest to me are just beginning to understand what it means for me and what is has meant for me. Most of the things written about it are so clinical; I think it's very difficult for a healthy person to understand what EDS can really mean. Symptoms and manifestations of the Syndrome vary from type to type and person to person, but in the hopes of enlightening people to the actual impact EDS can have on a person's life, here's a list of ways my EDS has impacted MY life.

1. Three and a half years ago, I lost most of the productive use of my feet. I somehow fractured my right talus (a bone in the ankle), the fracture didn't heal, and I had to have surgery 6 months later to remove scar tissue and the broken-off piece of bone. While I was healing, I couldn't put pressure on that ankle, and a week after surgery, the other ankle started feeling bad. To this day, it still does, and it's been constantly swollen since then. I wear braces on both of my ankles, and I can't run, jump, skip, walk any significant distance, stand for any real period of time, or use stairs unless I absolutely need to.
2. Even though EDS gives me "loose joints" and has forced me to live an extremely sedentary lifestyle, you'd never know it from my muscles. Especially in my legs, they are large, and they are super tight all the time, which means I constantly experience at least a low level of pain, fatigue, and/or soreness from which there's ZERO relief. Intense massage can help a bit, but it's not easy for people around me to do, because it's hard to get into the muscle. Imagine trying to knead a new basketball. That's what it's like trying to manipulate the muscles in my legs.
3. Most of the time, when I'm just going to school, I don't bother doing anything fancy to my hair. I used to straighten it almost every day (I have ridiculous Italian frizzy curls), but I stopped a few years ago - because it was painful. I never understood how other women got up and did their hair everyday, and then I realized that they were able to because they weren't in pain from it. I thought it was natural for my hands and wrists and arms to feel horrible after. I didn't realize that my finger joints, wrists, elbows, and shoulders were all constantly subluxing while I was working on my hair.
4. I am extremely clutzy, and not matter how careful I am, I always knock into things/knock things over. I smash my knees and/or elbows into doorjambs, walls, and tables/desks constantly, even when I conciously try not to. I will pour myself a glass of water, put it down, and not even thirty seconds later, manage to send it flying across the room even when I'm concentrating really hard on not accidentally knocking it over. My poor proprioception is because my joints don't have any idea where they are in space, so they can't accurately tell my brain where they are, allowing me to avoid such mishaps. This might also be why I'm terrible at parking straight.
5. Before I was born, my mother's doctor thought I was going to be born with spina bifida, because my AFP was abnormally high. After I was born, I developed jaundice, had severe milk allergies, and ended up at the doctor's office/ER multiple times for breathing treatments. I had chronic bronchitis, severe allergies which required shots, and by the time I was seven, my doctor noticed that I had absolutely no arch whatsoever on my feet, and I walked incorrectly. By the time I was ten, by orthopedist could pull my knee-cap halfway down my leg, and he told me I was "loose-jointed." I had chronic sinusitis and chronic ear infections, but I couldn't run a fever. I began to have chronic ankle issues - they were constantly rolling, I tripped all over the place all the time, and I went through all manner of braces and orthotics. I started getting injured constantly, and my healing times were over double what they should have been. I started having issues with milk again, and ended up doubled over in pain almost every night for no apparent reason, feeling like something was clawing and ripping at my insides. All of these symptoms were EDS-related, but not a single doctor ever mentioned the fact that there might be something bigger at work.
6. Every morning, I wake up with something new dislocated. Dislocations are supposed to be painful - and they are - but when you deal with them sometimes multiple times daily, you kind of get desensitized to it. As long as you can pop the joint back into place, you feel like everything's normal.
7. For someone who isn't blind or legally blind, I have pretty bad eyesight. My prescription is currently between -6.25 and -6.50. I literally cannot function without my glasses or contacts, and I need to be very careful, if I take my glasses off, to remember where I put them down. If I don't remember, I'm in trouble, because I pretty much need my glasses to find my glasses.
8. Stairs are bad. Very, very bad. It sounds crazy, but they're actually life-threatening. Since my joints are extremely unstable bodywide, I am a huge fall risk. If my ankles aren't rolling even with the braces and causing me to trip, my knees or my hips are likely dislocating, and when one part dislocates or subluxes while I'm in motion, another part inevitably follows. I can hold on to a railing or another person, but my wrists, elbows, and shoulders all sublux and dislocate, so that doesn't make things much better. Considering I have issues not tripping and falling flat on my face on flat, even surfaces, stairs terrify me. Years ago, when I used them regularly, I used to brace myself for a fall - I tripped up the stairs at least once a day every day I was in high school.
9. I don't ever feel well-rested. Ever. I can function after 7 and 1/2 hours of sleep, but on any less than that, I'm feel like garbage all day and can't keep myself awake. I set three alarms in succession the morning to mentally prepare myself to wake up, because I feel just as tired in the morning when I get up as I did at night when I went to bed. I also have my boyfriend call me every day to wake me up, because I sleep like the dead. Even if I've already gotten 8-12 hours of sleep, I sometimes won't wake up to my alarm clock and my phone blaring on full volume. I used to regularly oversleep the alarms by as much as three hours. I also seem to have a digestive intolerance/allergy for caffeine, so coffee, tea, or anything caffienated is out of the question unless I want to spend the next four hours in the bathroom.
10. I am extremely flexible. Creepily flexible. I had no idea that most other people couldn't touch their palms to the floor with their knees locked straight or that there was any part of someone's back they actually couldn't scratch until last year. I also only recently came to understand why women say they need someone to zip/unzip their dress.

So, welcome to my weird world. Do you know anyone with Ehlers-Danlos Syndrome?

Snowpocalypse Janus

Right now, I'm comfortably settled in the law library, and there are approximately 14 inches of snow on the ground. Snowpocalypse Janus hit Long Island and NYC yesterday, causing massive chaos and panic throughout the region. Attempting to make the drive home yesterday was one of the most physically, mentally, and emotionally exhausting experiences I've ever had in my life, so much so that I think I might still be running primarily on adrenaline now.

In the morning, everything was fine - until the snow started 3 hours earlier than predicted. By noon, the media and public officials were telling everyone to get home ASAP, because the worst of the storm would be upon us soon, and travel would be extremely hazardous. Of course, the NYC and Long Island region is hugely populated, and millions of people commute back and forth to work every day. In fact, so many people commute back and forth that rush hour in the region, occuring in both the morning and in the evening, can be up to four hours long each rush, because of severe overcrowding of the roadways and public transport. So yesterday, all at once, you had not groups of commuters on the road (people who generally leave their workplaces at different times during the normal rush hours), but ALL commuters on the road. Literally everyone in the area decided they'd better head home at the same time. Most of the main roads were sanded and/or salted in the morning, but snow was coming down at the rate of over an inch an hour. Temperatures were well below freezing, and the roads filled so quickly and cars had to move so slowly that it actually felt like the apocalypse was occuring. My boyfriend's home, which is normally a relatively quick 10-20 minute drive from my school, took me over 90 minutes to reach. Traffic on the parkway going towards his house moved at an average rate of about 7 miles an hour. Cars were sliding out and getting stuck all over the place, and I passed accident after accident on the way.

After stopping at my boyfriend's house to check the traffic reports and the weather, I figured out an alternate route home. I got back in my car, and it was honestly like the world was ending. Two hours later, I'd only made it about two miles from his house, and I hadn't even managed to average a mile an hour the entire way. I stopped at the Container Store just to get myself out of the car and calm down; the radio had announced that two of the nearby parkways were closed due to accidents, and the weather was steadily getting worse. My parents, both frantic, kept trying to get in touch with me. My father suggested staying in a hotel, but everything I'd really need for an overnight stay was at home: my phone charger, my medications, etc. My father's girlfriend's house was about another two miles away, and we decided that I'd try to get there, and either my father would try to come get me later or bring me some stuff, if the roads weren't going to be passable for my small car. It took me almost two hours to get to my father's girlfriends house, but thankfully, I made it there safely.

Normally, I spend a maximum of two hours driving in the car per day. By the time I arrived at my father's girlfriend's house, I'd spent a total of five hours driving my car through snow, ice, and stand-still traffic. I was so glad to be someplace warm where I could rest and try to relax.

For the next few hours, I monitored traffic cameras, traffic maps, and attempted to figure out what to do. At around 9 o'clock, the roads were finally clear enough that I was able to go home, driving less than 35 mph the whole way. I don't think I'd ever been happier in my entire life to be home. There were many times in the car yesterday that I wondered if I would even get home; I worried that I'd run out of gas, spin out, get in an accident, have the car break down, break down myself, not be able to physically endure the demands of driving due to my EDS - it was terrifying.

I am so grateful that I made it home in one piece. I am not grateful for the mass hysteria induced by the media and public figures, or for the utter failure of anyone to predict how bad the storm would get so early. Realistically, by the time anyone revised the time that the storm would be the worst, we were all screwed, because it was a race against the clock to get home before then - and no one could. We were all out in the worst parts of the storm, simply because someone got the weather report wrong... and then scared us all into heading out exactly when we should have been sheltering in place.

I think I need a nap.

Old and New

Sometimes, the law library feels like my second home. I spend so much time in here reading (and relaxing, when I have the time); it was almost strange to be elsewhere during break. Yes, my law school classes have started up again... too early! I could have used another week or two of break.

But now I'm back to the daily grind, which honestly isn't so bad. I'm one of those people who's only happy when I know I'm doing something with my life; little breaks and vacations are great, but too much time spent lazing around always ends up making me depressed. I tend to feel like I'm stagnating if I'm not working towards some sort of goal, which is why 2013 was a difficult year for me but also felt like a turning point in my life.

I started off 2013 with the flu and the one-year anniversary of my car accident, where I was hit from behind while stopped. I was depressed that I wasn't in school or employed, and I was really nervous about finishing my transfer applications and pretty down on myself in general. Losing my scholarship in law school, though the circumstances were extreme (shingles during fall finals, allergic reaction and cellulitis before spring finals, a debilitating care accident at the beginning of the spring semester which left me in PT 3x per week and unable to drive for a month, with horrendous, I-need-to-lay-down-NOW headaches, my mother's cancer scare and surgery in February, and there being a power surge that shut down my computer during my Transnational Law final and a proctor with no idea what to do) and my grades weren't bad (loads of B+s, a few Bs, and a B- in Transnational Law), made me question everything. Before starting law school, I was so sure it was exactly where I was supposed to be, and everything devastated me so much that I spent a lot of time wondering if maybe everything that happened was just a sign that I wasn't supposed to be in law school. My boyfriend, who hadn't had a car for over a year and was struggling with unemployment due to the job market and his bachelor's degree in sociology, managed to find a temp position, save enough money to afford to lease a new Nissan at a manageable price, and finally, finally get back into school, something he'd been intending to do since we met. To my surprise, I was accepted into a higher ranked law school than my former law school, AND the higher ranked school, which actually cost slightly less than my former law school, offered me significant scholarship money. (I'll still have boatloads of student loan debt when I graduate, but every bit of help helps!) I was nervous about attending, still in the midst of my quarter-life crisis, but everything ended up working out really well. I honestly believe that everything I went through with my former law school was so that I'd end up here. I hated my first year in law school, but the environment here is so different, so much more open and welcoming. I've made a few friends, gotten involved in a student organization, met some great professors, and I'm about 25,000x happier than I was at my former law school. I didn't apply to this school right out of college for several reasons, all of which I've thankfully found out were baseless worries. I was diagnosed with Ehlers-Danlos Syndrome in the last months of 2013, which evoked a lot of mixed emotions that weren't always easy to deal with, but at least now I can begin getting the kind of care I need to preserve my not-already-shot joints and my the rest of my health. I found a wonderful online support group for the condition, and I've begun educating friends and family members about EDS, which has helped me a lot.

2013 was also a big year for me in terms of my genealogy research. I found and connected with numerous modern-day descendants of my ancestors on both sides of my family, getting in touch with everyone from third cousins living locally and fifth half-cousins once removed living an ocean away in Denmark. I got all the paperwork together to finally order my great-grandfather's death certificate to find out the names of his parents and be able to start tracing the family back in Italy, and I found out some crazy information about my mother's father's mother's side of the family.

All in all, 2013 was a really big year for me. It had its struggles, but without them, I wouldn't be moving forward. I'm glad to be. 2014 has been fine thus far; my professors don't seem terrible, nor do my classes. My schedule isn't the most convenient thing in the world, but it's not bad either - it should allow me to get a lot of work done at school, which will be nice, since it means I'll have less to do on the weekends. I also did order my great-grandfather's death certificate, and to my surprise, the office was able to give it to me right away - I didn't have to wait the 4 to 6 weeks I thought I would have to for them to send it to me. I've already found another family member on my father's side that's more closely related to us than I thought I'd be able to find, and the grades I've received thus far - and the grades my boyfriend has received in the classes he took this past semester - have been pretty good. I finally got an A in law school (and in a subject in the field I want to work in), which was pretty awesome.

A very happy new year to all of you out there!

How did 2013 go for you? Did you hit any turning points in your life this year?

The Outsider

I'll be honest: I'm someone that doesn't usually like change. I know it's inevitable and a part of life, but it's disorienting, and that makes me uncomfortable. I like to always have a plan, and change tends to throw all your plans out the window.

This Christmas was a big change for me. Since I was a little girl, I've always spent it with my family, immediate or extended. Since my parents divorced, our celebrations have been much smaller than they once were, but there has still always been a comfortable familiarity about them. Until this year. This year, instead of my mother doing a Christmas Eve party, she asked my father if he was okay with her doing Christmas with my sister and I instead. Normally, my father does Christmas with my sister and I, since Christmas is also his birthday. Because my father is in a serious relationship with a woman whose family does a big Christmas Day celebration, he told my mother that would be fine. It took the pressure off of him to cook, and he's very comfortable with his girlfriend's family, most of whom neither my sister or I have ever met. So, on Christmas Day, he went off to his girlfriend's mother's house, and I went off to my mother's house.

Every Christmas Eve, my mother throws a party for her boyfriend's fiancé's (they live together and have been engaged for a few years, but there's no serious talk of a wedding) family. Her own family is not invited, except for my sister and I and our significant others, if we want them there. So, this year was no different, it was just that everyone was coming on Christmas Day instead of Christmas Eve. No big deal, right?

Except in some ways, it was a big deal. I had become accustomed to the new normal: seeing my mother Christmas Eve, and spending Christmas at home with my father, having a really low-key day with good food, lots of time to relax, and being in the company of only those people I'm closest to. It allowed me to continue winding down from the day before, which was undoubtedly stressful. You see, I have never liked my mother's boyfriend fiancé. He and I are civil to each other, but we will never have a familial bond - I accept that he's a part of my mother's life and important to her, but that's where my regard for him begins and ends. He has done things that have had a direct, massively negative effect on my life, my sister's life, and my father's life, and as far as I'm concerned, the actions he actively chose to take - the things he chose to do - are unforgiveable. So... it's really quite awkward for me to be around his whole family.

His family loves my mother. They love my sister. They're civil to me, but they treat me like the daughter time forgot - even though I've been spending Christmas Eve with them for the past eight years at least. They all exchange their gifts for the holidays at my mother's house. My mother and her boyfriend buy everyone gifts. My sister and I never do. When it comes time for them to hand out their gifts, at least two or three of them always give something to my sister. I never get anything. And I realize that Christmas is about giving and not receiving, but I can't say it doesn't sting that my sister is always included, and I'm... just not. It doesn't help that it took most of them years to remember my name, and even now a few ask my mother what my name is when they walk in the house and see me.

This Christmas, I felt like an outsider, which is something I don't think I ever expected to feel on Christmas. Even when I realized, after my parents split-up, that someday it was likely Christmas would be celebrated with whoever they chose to be with, I had hoped anyone either of my parents chose to be with would at least try to make my sister and I feel comfortable during the holidays. I didn't expect gifts or to be considered part of the family, but people remembering my name after eight plus years and treating my sister and I the same as far as gifts/no gifts would be nice. I am my mother's daughter, not a stranger or a guest of my mother's they've never met before. I've thought about what it would be like to be in a relationship with someone who also celebrated Christmas and to celebrate with their family instead of my own - even if I felt like an outsider, that would be a situation I chose.

Have you ever felt like an outsider at a holiday celebration?

Holidays from Hell

Okay, so can I just skip the winter holidays this year? Pretty please?

I don't mean to be a Grinch, but I am having the week from hell, and my level of Christmas spirit is at an all-time low. I was looking forward to being done with finals, decorating the house, sending out cards, making cookies, making some money babysitting, seeing my family, and spending time with my boyfriend. Of course, then shit hit the fan, and it took all of my excitement for the season with it.

My week started off with me getting sick again, right after finals. I've felt crappy for days, all stuffed up and gross. Then, the father of the two little kids I babysit for got hurt at work, meaning he was home with the kids instead of me. I love those kids to death, and babysitting them seriously makes my day when I do, so that was super depressing along with meaning that both the father and I were out the cash he'd get by working and I'd get by babysitting, right before Christmas, when it's usually needed the most. My mother then decided to turn everyone's holiday plans upside down and cancelled Christmas Eve dinner, replacing it with Christmas Day dinner - which would be okay, except my sister and I was planning to be with my father, as we have for the past eleven or so years since my parents split up, since Christmas is his birthday. He's okay with it, because now he'll go spend Christmas with his girlfriend and her kids, but my sister and I aren't invited since we're supposed to be with our mother. My mother is having her boyfriend's entire family over, and none of her own besides me. It's awkward, especially since her boyfriend and I have never and will never be on good terms due to the circumstances surrounding them getting together.

As if that wasn't enough, there's relationship crap going on - I couldn't even tell you if I'm in one anymore. I've been really upset, so now in addition to being all clogged up, my face is sore and swollen from crying and I'm nauseous. (And he's not speaking to me.) A bad fight right before the holidays when you've been together for almost three years will do that to you.

Originally, I'd planned to make a happy post about holiday traditions, but for obvious reasons, that isn't happening. I'm happy that nothing worse as happened yet (like a death in the family or something), but at the same time, it's hard to be grateful that the worst hasn't happened, you know?

What's screwed up your holidays?

EDS and Law School Finals

It's that time of year again. No, not the holidays - finals season! I had my first final today; I have four more and a paper to write before I'm done for the semester. I'm scheduled to be down with everything at 3PM on December 16th, but it's going to be a crazy couple of weeks.

Originally, this post was going to be a short note to let everyone know that I'll probably be M.I.A. until my semester's over, but I had been thinking a lot lately about how I haven't really posted much about Ehlers-Danlos Syndrome and its effects on me yet. I'd really like to help educate people about EDS and the impact it can have on a person's life, because most people haven't even heard of it, nevermind understand how drastically it can affect someone's life. So, today, before I'm away for a couple of weeks, I'd like to talk a little bit about how my Ehlers-Danlos Syndrome affects me, specifically during finals.

Finals are pretty much hell for everyone. There's a lot of studying to be done, a lot of stressing out about things you didn't learn during the semester, and the fact that you have to attempt to prove to a professor in a few hours that you know everything he or she taught you during the course. It's not fun.

For me, finals have become a sort of special hell. There are no epic complications that occur because of my EDS, but there are enough little annoying things that happen that serve to make the experience all the more stressful because I have a connective tissue disorder.

So, what's the first problem? Testing rooms. At my law school, there are a number of classrooms that slope downwards; you enter the classroom in the back of the room, and you walk down stairs towards the front of the room. Of course, one of the complications of my Ehlers-Danlos Syndrome, presumably Type III/Hypermobility Type, is that all of my joints are extremely unstable, epecially in my lower extremities. My ankles are so unstable that I have to wear braces on both of them all the time, and even with the braces, I'm constantly in pain, can't walk significant distances, can't stand for any extended periods of time, or use stairs. Between my ankles, my knees, and my hips, which all sublux (i.e. move partially out-of-joint) regularly (re: almost every time I move them), I'm a huge fall risk, especially with stairs. No problem, right? I can sit in the back of the room. I can get to the testing room a bit earlier so that I don't have to ask anyone to move, no big deal. What about signing in and out of the testing room, like everyone's required to do? That's a bit of an issue, because the proctors always stand in the front of the room with the sign-in/sign-out papers, and it'd be really awkward to try and shout up and down the stairs to them that I'm disabled and can't use stairs. So, again, simple solution: I get to the classroom early, I ask to speak to a proctor as soon as one enters the room so I don't have to broadcast my health problems, and I explain the situation. No problem, they can bring the sheet up to me when it comes time for me to sign out. All I need to do is wait until everyone else has signed out, because when the test is over, everyone lines up in the front. Okay, great. I have to sit in the room until everyone else has left, watching as people stare at me and wonder why I don't just walk down the stairs, since I cover up my braces with pants and most people don't realize I'm handicapped. Even still, it's a small price to pay, right?

Other issues are created by the testing classrooms being located where they are. Most of my testing rooms are on the lower level of my law school, which is basically like a basement... with higher ceilings. As it happens, there are no restrooms on the lower level, which means if you need to use the restroom during an exam, you have to run upstairs. (Most students will literally run as quietly as possible - every minute of time on a law school exam is precious, and the longer you're gone, the less likely it is you're going to have time to finish the exam/write the answers to essay questions as adequately as you should.) As I mentioned, I can't use stairs. Instead, if I have to pee during an exam, I have to wait for the elevator - which can be slow as molasses, since it serves eight floors - to take me up a floor, and then I have to wait for it to take me back down. Once again, it's not the greatest scenario.

After I got home from my exam today, I was notified by e-mail of another issue: parking lot closings. I have a handicapped parking hang-tag, because as I mentioned, walking any sort of significant distance is a problem for me. I sometimes have issues walking 50 feet, so not having parking available close to the building can turn into a huge issue. (Believe it or not, the availability of handicapped parking close to the law school building was a huge factor in me deciding to transfer to the school I'm attending. The other school I was considering didn't have parking nearby, and because it also wasn't close enough to easily accessible public transport, I had to eliminate it as an option.) Now, in addition to studying my ass off, I have to find time tomorrow to call Public Safety and see what's up, because part of the lot I usually park in is supposed to be closed before my final on Friday. If the handicapped parking will be closed or minimized, I have to figure out where to park. The only other lot nearby is a faculty lot, which I could get a ticket for parking in even with my handicapped tag. I can't walk from anywhere further away, meaning that Public Safety is probably going to have to send a Public Safety vehicle or golf cart to pick me up from an alternative parking lot and shuttle me up and back from my car to my final. Considering though that this is Public Safety, I could be totally screwed if they're busy. Public Safety had to shuttle me to and from my classes when I was an undergraduate student when I fractured an ankle and couldn't crutch the mile and a half across campus in the snow, and because of all the stuff they have to do, it could sometimes take them twenty minutes to an hour to get to me. If Public Safety at this school has to shuttle me anywhere, I'm going to have to make sure to arrive extra, extra early in order to make sure I get to my exams on time, all because I can't freaking walk to the building from the parking lot in Guam.

My exams themselves pose further problems. Sitting in a chair and typing furiously for three hours with no break or a super short bathroom break is not nice when you have arthritis in an ankle, a knee, and an elbow, as well as degenerative disk disease in your spine. I constantly have low-level pain throughout my body due to the EDS, and adding the inability to really move for three hours definitely doesn't help matters. As a special bonus, my fingers sublux constantly as I type, and I get horrible muscle pain in my arms from trying to keep my movements controlled. Thankfully, it goes away after a few hours.

Now, don't get me wrong: things could be so much worse. All of these things are relatively minor inconveniences - at the end of the day, I can still take my exam and go home. But as much as these complications are small in the grand scheme of things, they are still complications. They still can and do present additional challenges that I have to overcome in order to accomplish the same seemingly simple task as every other law student - taking finals. It is frustrating, and it's the type of thing I don't just deal with during finals - EDS affects my everyday life in so many ways. Tasks that most people don't even think about can be a challenge for me, whether it's something as simple as brushing my hair (painful wrist subluxations mean constantly dropping the brush while hissing in pain) or getting a drink of water (my shoulder dislocates when I have to get the water jug down from the top shelf of the fridge). I'm so grateful that my problems aren't worse, but at the same time, I wish more people would take the time to understand that a non-obvious disability is still a disability, and it still has the power to impact someone's life in an extremely significant way. Just because you can't see it doesn't mean it doesn't exist.

Do you think people should be more aware of the existence and impact of non-obvious disabilities?

See you all in a couple of weeks!

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.

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?

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?

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:

1. 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.
2. 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.
3. 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.

You would think, at a show that prominently features a disabled character with a not-so-obvious physical disability, that the staff would be more sensitive to the fact that people have hidden and invisible disabilities. The irony was not lost on me.

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?

2L Time

This past Monday, I started school as a second-year law student, a.k.a. a 2L. Since my last post, I've been busy taking care of all the things inherent in going back to school as a transfer student, i.e. buying textbooks, getting a student ID, getting frustrated with financial aid, navigating the virtual maze that is the federal student loan system, figuring out my new school's e-mail system and building layout, finding and completing my first assignments, and getting back into Law Student Mode (TM).

You know what's crazy? It's been nice.

When I first started law school, I hated it so much. I was constantly depressed, and I felt overwhelmed. Everything that I had loved about school growing up was absent in law school, replaced by a tremendous pressure to memorize large amounts of mundane facts and arguments for the sake of becoming familiar with caselaw, even though all that would matter come finals would be the holding of the case and the policy considerations behind it. It was hell. Though according to everyone who went to law school, that was to be expected. It followed the stereotype: first year they scare you to death, second year they work you to death, and third year you don't care, you're just trying to find a job. Some of the lowest moments of my life were during my first year, and I felt like I was under an astronomical amount of pressure. I worked myself half to death, and when I lost my scholarship over 0.04 GPA points - when I managed a 3.22 despite all the shit that happened my first year (illnesses, injuries, my mother's health scare, getting rear-ended really badly, etc.) - I didn't want to get out of bed for days. I've been low before - it's par for the course with depression - but my whole life felt like a lie. I'd always believed that if you worked hard enough, things would work out okay, and to me, nothing felt okay. The year off I took wasn't much better. I couldn't find a job, thanks in part to the economy, my disability (no walking/standing/lifting regularly means no retail/food service), and my time commitment (no one in my undergraduate degree field wanted someone who didn't intend to work at the company long-term). I was poor, I was stressed, I was bored, and it just wasn't good.

Being back in school and working towards something again has made me feel so much better. My new school has a very different atmosphere than that of my former law school; it's much more positive and upbeat. My first year, it felt like everyone was against us, trying to trip us up, testing us, and making us question whether or not we could do it, but thus far, my professors and all the people I've encountered only seem encouraging. Part of that probably has to do with being a 2L (professors know you've survived your first year and come back for more), but I think part of it also though is definitely the school itself, and that has given me an overwhelming sense of peacefulness. I feel like I'm exactly where I'm supposed to be. I felt like that my senior year of college and throughout the summer afterward, but I was plagued by doubt as soon as I started law school. For the past year I've constantly questioned myself and my decisions, and it's a relief to start feeling more like I've made the right decisions.

I'm planning on posting about my summer adventures later on this weekend or early next week (I did a lot of cool things locally this summer, and I took a ton of pictures), but until then...

Have you ever been in a situation where for a time, nothing felt right, but it led you to something that  did?

Is it TDaP or DTaP?

Last Thursday, August 1st, I had an appointment with my doctor to get a school physical done. I normally don't get a physical every year (I see enough doctors during the year and have enough testing done that there rarely seems to be any point), but since I'm transferring, my new school obviously wants one done. No big deal.

It was only after I was in with the P.A. that I found out I needed a vaccine booster. I have no issues with needles, so I stuck out my arm and in went my booster TDaP/DTaP shot. Once again, no big deal.

Until, you know, about a minute later, when most of my arm went numb and the place where the needle went in started to itch. Neither the P.A. or the nurse seemed worried, so they finished filling out my paperwork and sent me on my way, telling me the arm would probably be sore tomorrow and not to worry about it. Of course, the next morning, I woke up with a hard lump on my arm right where I'd gotten the booster shot. Like any good millennial, I turned to Google. Google informed me that this was relatively normal; some people got a hard lump after getting the shot, and it was likely a minor reaction to one of the vaccine components that would go away in a few days.

Over the course of the next few days, the lump grew to the size of a golf ball. It was itchy and warm to the touch. Pain radiated up to my shoulder and down to my elbow. First, the lump wasn't discolored. Then it was red. Then it looked like I had a massive purple bruise. That's when I decided to call the doctor, who wanted to see me immediately. I drove myself to the doctor, and lo and behold, I was running a fever for the first time in 21 years! (I don't ever get fevers. Like, seriously. I've had sinus infections, ear infections, colds, bronchitis, the flu, and all those other things you're supposed to get a fever with, and I NEVER get one. The last time I ran a fever, I was 2 and had walking pneumonia.)

Yeah, apparently I'm allergic to one of the vaccine components...

On a brighter note, while my body is being difficult, I'm actually getting kind of excited for law school, which is beyond insane (and which I'll insist was never the case when finals week rolls around), but... I like justice. I'm actually trying my hand at the transfer writing competition, which for those of you unfamiliar with law, isn't really what you'd think: it's basically how you get on to law review/a law journal, something which employers generally like to see and which gives you the opportunity to potentially publish a piece of your legal writing. I'm not really sure I'll finish the competition, because I'm nervous about how my legal writing will come across when I haven't done any of it in a year, but either way, going through the sources has been a nice re-introduction to law school. I was petrified I'd have forgotten everything during the year off I had, but thankfully, that isn't the case.

Everything has also improved as far as my relationship goes, which is a relief. We still have our issues to work on (who doesn't?), but I think we've managed to find the common ground that we needed. We'll see how things go, but they're looking up from here.

Standing on the Edge

One thing I absolutely loathe about being in my 20s is how frequently I feel like I'm standing at the edge of a cliff, looking down, and wondering what the heck is going to happen next. All of my expectations have gone out the window - I have no idea if I could fall off the metaphorical cliff, if I could be pushed off of it, if I should retreat to whatever's behind about me, or if I should jump to whatever is to be found below me. It's exhausting.

All to frequently, I feel like I'm having the day/week/month/year from hell. Sometimes, it's so bad that I feel like Earth must be hell, only people are too caught up in themselves to realize it. Of course, when I realize I'm thinking this, I tend to think about how screwed up that thought must be, and what a drama-llama I must be for having it. Then I wonder if it's just my depression talking.

I was twelve when I was formally diagnosed with depression, and looking back, it wasn't a surprise. Yes, I was young. But by that time, I had also been exposed to the deaths of several loved ones, the deterioration of my parents' marriage, and physical, verbal, and emotional abuse. On top of puberty and all the crazy crap it does to your hormones, mental illness runs rampant in one side of my family.

Needless to say, I often wonder - and worry (yes, my anxiety diagnosis went hand in hand with my depression diagnosis) - if things are really as horrible as they feel. It's a product both of my depression and anxiety and the way people close to me have treated me over the years, always quick to tell me that whatever I was feeling was wrong and pathetic and weird and screwed-up. It made me become exceedingly careful about revealing my feelings or allowing myself to even feel them, for fear that I would be judged harshly for it.

At the moment, I feel like I have a lot going on.

• I'm in the middle of transferring law schools, something I really didn't want to do. Unfortunately, I didn't really have much of a choice after I lost my scholarship. I'll have a longer commute, a more hectic schedule, a very new/different campus environment, a number of new traffic laws to remember, a new group of people to get used to, and new challenges related to my mobility impairments to deal with. I'm hoping it will be a better environment for me, but I still haven't been able to let go of the resentment I have towards my old school for making this change necessary. I was comfortable there, and despite the constant stream of bad luck I got hit with during my first year (shingles, cellulitis, an allergic reaction, numerous joint injuries, a severe concussion, getting rear-ended, and the major health scare of a loved one), I still managed a GPA over a 3.2.
• My hypermobility is worsening, probably due to the lack of exercise I can do without dislocating something/subluxing something/ending up in a shit-ton of pain. In the past six months, both my shoulders and my knees have started dislocating, mostly notably when I'm trying to get to sleep.
• I've become estranged from two close family members. Even though one was extremely abusive during my childhood, it still hurts.
• I don't know where my relationship stands. There's an issue my SO (?) has had since pretty much the beginning of our relationship. At first, I was understanding, and it wasn't a big deal. It did, however, present issues for the long-term future of our relationship if it remained the way it was. I encouraged him to seek the help necessary to become psychologically healthier in that respect, doing whatever I could to make him realize the gravity of the problem while trying not to push too hard and respecting the fact that these things take time. Nearly two years later, even after seeking help, the problem is not better but exponentially worse, and it makes me feel horrible. I can't help resenting him for putting me through this and not doing the necessary work to get through it. I love this guy - I want to marry him someday, for fuck's sake, but I've gotten to the point where I lash out at him in desperation to make him see how much he's hurting me. He insists he loves me and that he's working on things, but I can't take it anymore. How long am I supposed to wait for things to get better?

Above all, my relationship is what has me the most stressed and upset lately. That's what has me on the edge of the cliff right now. We're not talking, and everything feels so hopeless. I love this guy and want to be with him and be happy more than anything in the world, but he doesn't seem capable of meeting me halfway... or even realizing that he isn't. Whenever we try to talk about it, I feel like he's so insensitive and/or completely out-of-touch with the reality of how this makes me feel; he de-values my pain. First, he seems to understand, but reacts by beating himself up about it and getting down on himself. Then, he does a one-eighty and suggests that I'm taking out my stress from other things on him, and that he's the one who deserves an apology.

It makes me infuriated and extremely depressed all at once. I've had eleven years to get used to my depression and anxiety and how it can cause me to react, and I have become almost hyper-aware of the things I'm feeling or not letting myself feel at every moment. I DO NOT let myself take my stress and unhappiness about something on a person unrelated to it under any circumstances. Doing so is one of my worst fears. If I feel like I'm going to, I tell the person that I can't talk at the moment, need to be left alone, etc. and that I need to decompress and calm down; it isn't personal, I just don't want them to be the victim of misplaced anger/agression/whatever.

I don't know what is going to happen, and part of me wishes I could freeze time right in this moment, so that I'd never have to deal with any of those questions standing on the edge gives you.

Do you ever feel like this?

Between the Lines

"There are many stories between the lines."

- J. K. Rowling on the Black Family Tree

Okay, so I'm really, REALLY into genealogy. Truth be told, I find it fascinating. I've devoted much of the past year of my life to researching my family's history and lineage for many reasons, something a lot of people would probably find boring. I don't though, because for me, it's a challenge. Doing genealogy research is like attempting to put together a really large puzzle - only you don't have all the pieces, some pieces seem impossible to connect, and every time you do connect two pieces, the puzzle itself expands. It's frustrating, but it's so crazy, the types of things you can find out.

Before I really started this past year of research, I thought I knew a lot about my family. My father's side of the family was a direct line from a Mayflower Pilgrim, after all. I didn't know much about my mother's side of the family, and I wanted to, but it seemed unlikely that her lineage would trump my father's. As it turns out, both sides of my family have some insane genealogy that I never would have expected.

What would you find among the branches of your family tree?

  On my father's side of the family, I'm a direct descendant of at least two Mayflower Pilgrims (the second which I had no knowledge of until recently), and I'm distantly related to more than a couple of U.S. Presidents and several famous entertainers. I managed to find someone online who's something like the 5th half-cousin once removed of my grandmother, and through his records, was able to trace one half of my grandmother's family not just back across the Atlantic to Norway, but back from Norway to Denmark in the late 1600s. The person I got in contact with had an entire website up dedicated to family genealogy, and through a common however-many-times great-grandfather, I was able to add over 200 relatives to my family tree. Because he lives in Denmark, he also owns or has access to a number of old family artifacts, including a portrait of that great-grandfather I just mentioned. I've always thought my father looked more like my grandfather than my grandmother, but holy crap, my father's nose and lips are identical to that great-grandfather's - even though they lived over 200 years apart!

On my mother's side of the family, I was anything but prepared for the things I found out. As it turns out, my mother's maiden name is a very, very old Italian name, and by very old, I mean it turns up in records as early as the 7th or 8th century. It apparently comes from a man who came from another country and conquered part of modern-day Italy; everyone with the last name in Italy is considered to be descended from him. He settled there and had children, becoming a noble, and along with a number of famous descendants, including at least one (infamous) pope and an old Italian princess, there are a whole bunch of freaking castles that - to this day - belong to, used to belong to, and/or were named for the family. I haven't found a definitive genealogical connection yet, but my great-aunt, who unfortunately passed away long before I began my research, always insisted that we were directly related to Italian royalty/nobility. She'd had information on our direct line going back several centuries, and she was an extremely intelligent but humble woman - unless she verified that information 10 ways from Sunday, I don't think she'd have told anyone. It wouldn't be a big deal to her that she was related to such people; it would just be a big deal to her that she was able to go that far back.

I've also found out a lot of things that probably aren't interesting to other people, but they are very interesting to me. Take, for example, the fact that one of my great-grandfathers was a barber. His brother was also a barber. No one had any idea how my great-grandfather met my great-grandmother, but as it turns out, her brother was also a barber who lived in the same area. Whether they ever worked together I couldn't tell you, but it's something that could easily explain how they originally met. Being related to all those barbers is also kind of funny when I think about the fact that I cut my own hair. To my knowledge, I'm the only one in the family that does, and I'm good at it. I've taken as much as eight inches off and people tell me it looks professionally done. One of my grandmother's also used to sew all the time; she made everything, and she was good at it. As it turns out, her grandfather worked in women's clothing as a "presser," and it seems like his siblings did too.

All in all, it's been shocking to discover the stories between the lines, to realize how much we don't know - or don't expect - about where we come from. There's a lot of truth in the way people say, "It's a small world." In some ways, it feels like that's an understatement; a lot of the time, we may be more connected than we think.

Have you ever looked into your own genealogy and found something you definitely weren't expecting?

Exes + Social Media = Nope, Not For Me.

Earlier today, someone I'm friends with posted this article to one of their social media accounts. It's all about how members of the social media generation can keep up - and apparently frequently choose to keep up, with their exes. I know that a lot of other members of my generation do choose to do this, but I don't understand why.

Ultimately, exes are exes for a reason. I think most people, immediately after a break-up, go through a period where they can't think about cutting their ex out of their life completely. I know I sure have, in past relationships. When you care about someone, it's hard to stop overnight. But as time goes on, eventually, I would expect that the majority of people would not want to keep up with their exes - or at least not with many of them. There are certain situations where I could understand having a way to keep in touch with an ex, but I feel like those are likely to be few and far between.

For example, I currently have one person that I consider an ex friended on one of my social media accounts. We dated for a very short period of time when we were young teens, but since we were both in a special program for "advanced" students in our school, we were stuck together  - with the same group of people - from third grade through tenth, both long before and long after we were a couple. The fact that we were ever together is pretty insignificant to our history; the group of kids we were thrown together with was more like a family then anything. It's kind of uncomfortable to think about the fact that we were ever involved, because looking back, it feels vaguely incestual. Needless to say, I don't believe either of us think of our brief involvement as anything particularly noteworthy or important. We have each other friended because the program we were in created a unique kinship between everyone in it; even those of us who weren't friends or didn't like each other had to get along, and we all bore witness to the trials and tribulations of all of us growing up. We were forcibly connected to each other for almost half of our lives, and so we know each other better than almost anyone else. Even if our connections are now more tenuous, it's not so easy to just completely forget them.

All of my other exes were pretty much written out of my life as soon as I was over the relationship enough to remind myself that it was the healthiest thing to do. Why cling to a relationship with someone that it didn't work out with? Sure, at some point you cared about them, but why waste your energy and emotions continuing to do so when that clearly isn't going to get you anywhere? Why prevent yourself from moving forward by keeping yourself tied to someone? I mean, it's great if you guys had a great friendship first and/or a totally amicable break-up because you genuinely like each other but agree you definitely aren't meant to be together. But why would anyone choose to remain connected to someone who didn't want to be with them, who they didn't want to be with, who didn't treat them right, who they didn't care much about to begin with, or who didn't care much about them to begin with? What in the world is the purpose of remaining connected to someone that was just a fling or who you only casually dated for a few weeks or who had no regard for your feelings?

Do you have exes friended on social media?

Allergy Fun

Driving home from Robert Moses State Park



Ugh. Allergies suck. I've had them since I was a little girl, but lately, they've really been bringing me down. Apparently, going to the beach now causes me to break out in a rash (which is not sunburn) and hives. What?

Last Saturday, my boyfriend and I ventured out to the beach. We spent a nice hour and a half or so laying out on one of my old sheets, talking and enjoying the weather. It was hot out, but there was a nice breeze coming in from the water. On the ride home, I noticed that I was starting to get itchy. I thought maybe I had gotten a little burnt or that my skin was just dry, nothing that was out of the ordinary. Then after we got home, my boyfriend went to take a shower, and I realized that the back of my hand was covered in small hives. By the time he was done in the shower, I felt itchy everywhere, hives were also on my feet, and both of my thighs and my chest had broken out into a warm, red rash.

Looking up at the bridge going over the Great South Bay

  Fun, right? Unfortunately, this is the second time something like this has occured this summer. I broke out in rashes on my arms and legs a few weeks ago, also right after being at the beach. I don't know what's going on. It seems pretty clear that it's some sort of allergic reaction, but what am I allergic to? Is it the sun, the heat, the sand? Considering the hives and rash have been coming and going for the last couple of days, I'm baffled. I've been asking myself a million questions. Have I eaten something I don't normally eat? Have I changed any of the cleaning products I use? Is there anywhere I've gone that I could have come into contact with a substance I need to avoid? Are there any non-allergic conditions or diseases that match my symptoms?

Foot hives

It's crazy. Apparently, my mother and sister both sometimes get hives on their hands and feet after being out in the sun, so maybe we're just a family of vampires or something, I don't know. What I do know is that I'm already on allergy medication for about 75% of the year already; I take Zyrtec-D twice a day just to be able to function on a regular basis throughout the spring, fall, and parts of the early winter and early and late summer. I'm allergic to pollen of all kinds, mold, dust, grass, and about every tree that grows in my neighborhood. The past few years, I've all but baricaded myself indoors during the entirety of the spring and fall in order to avoid allergy and asthma attacks. Though I used to have my mother's olive-toned skin, I've become extremely pale, and my Vitamin D levels are startlingly low. I was on allergy shots when I was younger and they were recommended for me again a couple of years ago, but $90/week for only a possible 30% reduction in symptoms after two years? There was no way I was going to afford that as a college student, nor did it seem worth it.

I am so frustrated. Do any of you have really random/unidentified allergy triggers? How do you deal with them?

How Am I Supposed to Feel?

There are a bunch of posts I've been working on finishing up lately, but yesterday, things came to a screeching halt for me when I found out that an old classmate had died.

I am no stranger to death. I have lost a number of family members over the years, as well as friends, pets, and friends of friends. Death has had an enormous impact on how I view life and on how I choose to live it. And while death can be devastating to the ones left behind, it's also something that, for me personally, isn't nearly as scary as it used to be. I think about being born - I have no memory of it, but how traumatizing must it have been? How could I have understood what was happening or where I was going? How could I have had any concept of what living was? Dying is something I've come to view as the natural partner to birth, if you will: everyone who is born must also someday die. In the same way that no one knows what comes after death before they have died (though they may have beliefs about it), no one knew what came after birth before they were born. But being born seemed to work out okay, didn't it?

Learning about my classmate's death has left me confused and wondering how I'm supposed to feel. This guy was in my 7th and 8th grade homeroom. I remember other people talking to him or about it. I know he was very close to another person who was one of the few people who was actually nice to me in high school. (I hated high school. One of the happiest days of my life was the day I graduated. I have a million-watt smile in all of the pictures people took that day, let me tell ya.) He had parents that loved him, a brother, a girlfriend, friends, and extended family. He didn't influence my life until he died, but he influenced a lot of others.

How am I supposed to feel about that? He wasn't my friend. He was barely even an acquaintance. But he was close to some of the people I care about, who are now grieving. I can't really be sad; I hardly remembered him. At the same time, I can't be totally unfeeling: I did know him at some point, he was young, his death was a horrible accident, and he was cared about by people I cared about. How am I supposed to feel?

Have you ever found yourself in a similar situation? How did you feel?