Chapter Five: Time to dance.

This is just a side sequence about my dance and performing arts history...

My mom had enrolled me in a top of the line dance studio a few buildings down called The King Centre. This place was amazing. I went for tap and ballet with Miss Kim. She was so nice. I actually enjoyed it a lot and I surprisingly didn't have problems. It actually helped my arthritis astronomically. I don't know where I would be today without dance.

Our recital was Wizard of Oz themed. Our dance was a tap dance and we were the Mischief Bears. I know, there are no bears in that story, but that's what we were. It was the cutest thing though. We wore brown velvet leotards with pink frilly tutus and white ruffle tiaras, and we wore white ruffly socks with our tap shoes. I can still vaguely remember the song and parts of the dance. Hell we rehearsed it enough.

I had also taken an acting class at that studio with an ex-cast member of the famous soap opera Another World. We had so much fun in that class. i had a giant bear the size of me that my dad had won for me for Valentine's Day that I would bring to class and we would act with it and make up scenes. Fun class it was.

I had later on moved from Midvale Wanaque to my grandma's (on mum's side) in Glen Rock. Her house was beautiful. Anyway, I'll get into that later. This chapter is about performing arts.

I had attended a new dance studio called Miss Patti's School of Dance and had taken a jazz class. My instructor was a dancer for The Nets. Miss Patti's was a top of the line dance studio as well. It just wasn't like The King Centre however.

Our recital that year was 50's themed and we wore green poodle skirts and did a jazz routine to Bob Seger's Old Time Rock and Roll. Oh man, was my other grandmother excited. I honestly can't stand the song, but she loved it. Quite amusing.

My friend Cathy had gone to that studio as well. Yes, I had a friend. She was in Miss Patti's jazz class in the room next door and her routine was to Splish Splash and they wore cute frilly blue outfits.

Later that year, I had also gone for piano lessons down the street. I was quite stubborn in that class though. I wish I hadn't been. I was only 7 though. At least I learned how to read music and I learned some basic theory at an early age.

Soon I had migrated my way down to Fort Myers, Florida with my family. There is where I went to YMCA for hip-hop with Miss Isabelle, Irish step and clogging with Miss Kathy, and lyrical with Miss I don't remember because she didn't have much of a personality, and when my wrist was flared up she wouldn't let me dance, which that upset me because I was capable and that's what I was there for.

I had also gone to another dance studio down the street at the same time for ballet and tap classes. Yes, I've taken many classes at once. We could afford it because my dad had a descent job at the time and my mom was making a shitton waitressing. Dance has always been my passion, so they let me follow it. I'm very thankful for it.

A year later, we had to move to a boring town slash fourth largest city in Florida called North Port. There was a dance studio down the street that looked quite legit. It was a big building called Universal Dance Academy. What a joke that place was. I had gone there for two years. Well, perhaps a year and a half. The owner's name was Tony. He was a guido wannabe who knew how to bullshit. "Our ballet instructor is a silver medalist in Russia!" Mhmm, that's why the class was just a mediocre version of the basic classes I had already graduated from.

The jazz class however was okay. My dance instructor was hawt I must say. Her name was Miss Courtney. She tought us how to walk in heels. That's where I learned, and now I don't wear anything but heels unless I work out. I took her intermediate class and it was fun. Just at my level. The next year, I was ready for advanced. Tony had supposedly placed me in advanced, but it felt like beginner to me. So I left.

I also had taken an acting class there. It was fun, but we didn't learn anything. So it was pointless.

A year after I left, I tried a place in Port Charlotte. It was actually pretty good, but because these two girls who had been a threat to me attended, I left.

In early 2008, I had finally found a new studio to go to after three years of not dancing. It's called A Better Place. I was hoping it would live up to its name. It didn't. It only did because the breakdance class I had taken was beast! My instructor was a super fine latin boy named Javier. Most of the time, no one showed up to class, so it was like a private lesson! He was so cute!

I had missed several weeks though because I was sick. I missed recital photos because the staff there failed to call me to let me know. How responsible. The rest of the classes there were horrible. Javi tought the only good class. now that he left, there's no hope for that place.

I met his younger sister in my dance class at school. She was the shit. If only I knew how to spell her name I would tell you her name. Let's just take a stab at Lortice. Pretty sure. She and I used to dance together, and we would booty dance with Marquis who reminded me of Beyonce's choreographer. He was super gay. It was adorable. I mean, he was one of those guys who would snap in your face and hollar "Mmm gurl!" and start talking really fast and skip around.

I had fun, so I auditioned for the actual dance team. The auditions were so fun! I made it, of course. I knew I would. I was so happy. I'm not being cocky, I'd just had so much experience that I'd earned it. During the first couple of weeks, we were practicing a modern routine to Mary J's "Just Fine". It was a lot of fun. During a measure of the song, we split into groups of four. My group was two Jamaican chicks and another white girl. Each group had to make up something of their own for the measure. Ours was extremely Jamaican Dance Hall style. The other white girl said I looked black doing it. Quite a compliment that was. Amusing as well.

One day during practice, this preppy chick walked in on me changing. Instead of apologizing for not knocking first, she just made some hissing noise and had this hilarious look on her face. "UGH I did NOT need to see that!" All I could say was "Bitch you liked it." but I kept my mouth shut.

After a while, the dance team wasn't so much fun anymore. Everyone was so bitchy and competitive against each other rathjer than being competitive against whatever competition the team didn't have. It was patheitic. Dance classes weren't fun either. I was in the hospital for a week with pancreatitis. I came back still in recovery. To think the girls would ask if I'm okay, no. Instead they bitched at me to go full out. It was to the point where I held back tears and would rebel against the routine, which I would NEVER do. My attitude was fuck this. It's just one big socialization room for fat black chicks and for bitchy white chicks to have their "who can suck at dance more" competitions at my school anyway.

For now, I'm training my arse off in ballet so I can go straight to the advanced ballet and contemporary classes at Broadway Dance Studio in NYC. For how hard I've been training, I'd BETTER make it into the advanced or else I'll consider myself a complete failure and will never forgive myself. Sure you may think why is she being so hard on herself?, but if you were dancing your whole life and were training yourself all day everyday to get into a class and discovered you weren't good enough, you would feel dicouraged and give up too. I'm a perfectionist and completionist. It needs to be completely perfect in order to be near complete. Dance is the one thing I absolutely HAVE to be perfect in. No excuses or exceptions.

...on the the next chapter continuing where we left off before this sequence!

Chapter Four: "Be a good girl, and walk for mommy!"

One day, I was with my mom at the super market. She had to carry me because I was having a bad day. This one woman asked me why my mom had to carry me. From what my mom had told me, she said something like "Why don't you be a big girl and walk for mommy?" or "Aren't you a little big for mommy to be carrying you?". My mom's reply: "She has arthritis...!" That shut her up.

Some people are just so rude. When there is someone with a disability walking, limping, or wheeling by, I don't sit there and stare at them. They're just another person to me. They have places to go, important people to see who love them just as they would love "anyone else", and there's just as much hope for them if not more because they can make a difference by spreading awareness about whatever it is they may be diagnosed with.

My parents had taken me on a trip to Disney World I guess as a sympathy trip for me. It was fun. Even though I had to be in a stroller, it didn't bother me. I didn't think twice as to why I was in one. I knew I had been limping that morning, but it didn't really matter to me or even occur to me that it was the exact reason I was being pushed along in one. I still had fun there, and that's what matters.

I wonder what people thought if they saw me. I didn't care or even think about it for that matter, therefore I don't remember or even care to. I'm sure the way society is though, I was glanced upon by some.

I remember one morning in our hotel room when I woke up that morning, I was limping of course. That's the way every morning went. I remember my parents joking and trying to make me laugh about it. "Alright, quit the limping!" I laughed and actually found it amusing. I still wasn't bothered by this disease yet. I was too young to understand how bad it was, and we had no idea it would actually get worse, for no one wants to think about that. All we wanted to do was hope and pray for improvement.

Well, ironically, the people at my church/school prayed for me, and ironically it got worse and worse the more they prayed. It eventually traveled to my wrist. My right wrist got a bit swollen and it hurt to move it. It still didn't phase me. I just thought oops it's in my wrist now. Sure it was painful, but I was apathetic towards it. As long as I could still play on the swing sets and do my thing, it didn't matter.

I still had my family who loved me, and cared about me, and spoiled me. When I was in pain, some would treat me like a princess. I was such a lucky kid in that way. You know how many kids are out there who don't have families who care for them? I can't even imagine.

I was happy to have my mom who would give me my meds and drag me to doctors' appointments and emergency room visits (which she still does), and my grandparents on boths sides of the family to spoil me, and my godmother who always made me laugh. They all still do pretty much.

Chapter Three: The Uniquely Dis-Figured Drawing.

Besides Miss Marge, there were several other people there. A group of older girls (Sheryl, Joy, Joyce, Bridget), and two pastors (Chris who was married to Sheryl, and I can't seem to recall the other because I rarely saw him). Chris and Sheryl had a baby named Ian later in the year. I wonder how they are doing today.

One day, they had all assigned the kids to lay on giant posters and trace each other. We had to draw our faces, clothes, and hair on to make "ourselves on paper" basically. Every poster I had come across had a perfectly healthy straight legged child on it. Mine was the only one with a bent knee because I didn't have a choice. It really wouldn't go anywhere. I was somewhat upset, but it didn't bother me a whole lot. I was just more confused than anything. Why was my leg bent and not any of theirs? That was the main question.

The class was always assigned to sit on the floor in the classroom either in a straight line across the room, or in a circle around the room. All but myself were always commanded to stay sitting Indian style, or "like a pretzel" as they called it. I didn't have to because it was impossible for me of course, for the right knee was bent, but not all the way.

I didn't socialize with anyone there really. I would talk to Brianna every once is a while. She was cute. She had really long white hair down to her tush that she wore in a braid everyday, and on occasion it would be in high pigtails which made her look like a puppy.

I was always the quiet confused one. I was always the observer. I never really followed what people were doing. It's not that I wasn't capable, I just didn't have the urge to be too social. I never understood what socializing was all about. I liked to just watch people do so. Being social seemed as if it would be too exhausting to me. I was already fatigued and confused from the arthritis. (I now understand what the term "introversion" means. I have always been the perfect example of an introverted being.)

Instead of playing with friends, I layed around reading books. My favourite series was "Busy Town of Richard Scary". I mean, how awesome is a worm piloting an apple helicopter around, and a monkey driving a stereotypical banana car, or some other weirdo driving around in a pickle car? Pretty awesome I must admit.

I have always had such a vivid imagination. I didn't spend time with other kids because I was too sick. Therefore, I sat around the house either reading, playing with the animals, and making up stories. I even used to make pictures with my food. I thank my godmother Lauren who we all call Bubba for introducing me to this act of "food art". We used to sit at the coffee table in my grandma's living room making pictures with veggies and mashed taters. There were these plates with cartoon kids on them that my mom made when she was young that we used to make boobs on with the food. Weren't we mature?

Bubba also introduced me to a very special condiment called ketchup. We would put it on our mac and cheese and egg noodles. Yummy stuff. Yeah it sounds gross, but so does tofu, and tofu is amazing. You don't know until you try. It's called being open minded. That's what life is about.

Chapter Two: The Diagnosis Table.

I can't remember my fourth birthday to save my life, but all I know is all I had at the time was my family, Lance, and the kitties - Wesley and Otis. Wesley was a fat and jolly Russian Blue who only had one eye. He was such a badass. Otis was a white manx who apparently didn't go through the full eye colour change. One eye was blue and the other was greyish instead of the orange. He used to run up the walls with his claws.

I was still a normal little one who was still exploring and enjoying life. I was able to run, jump, draw pictures, and perform other simple tasks such as turning a sink faucet. Little did I know, it was the last few months I'd be able to ever enjoy being "normal" again. Therefore, it was taken for granted.

My parents eventually kept examining my right knee. They kept poking it and asking each other questions as to why it was supposedly "swollen". I didn't notice or feel anything wrong. I kept pondering to myself why they were so concerned. I felt fine.

After some time had went by, they eventually brought me to this Chinese pediatrician guy down the street named Dr. Gong (yes, how stereotypical). He thought I had water in my knee. To this day, I can still vaguely remember being placed on a table being held down by what seemed like about five people as he sucked the life out of my knee with a giant syringe. I can vaguely remember the scenery, but I can still remember the feeling clearly. I had "moved around too much", so he did it a second time with another syringe. Imagine being four years old and that happens.

I'm not sure how they found out, nor do I want to even ask. It's an emotional topic to me, and I don't want to sound hormonal when I ask. I just know the diagnosis was JRA positive.

They had sent me to a local hospital to get labs done. It's where they have to draw a couple vials of blood out of your arm. I felt the need to mention what they were because I doubt the healthy people have to get them done. My first lab work was so painful. I'd never had anyone draw blood from me before. I was of course screaming like a little bitch so they had to make another attempt in my other arm.

Eventually, I finally started to feel pain in my right knee. It wasn't anything too unbearable. It was just starting. Then, all of the sudden, within (I'm guessing) weeks, I was dramatically hit with the most painful thing I've ever had to deal with.

Mornings were dreadful. I woke up unable to get out of bed. When I was finally ready to get up, I would limp my way across the house. My knee was the size of a soft ball. Compared to the rest of my scrawny self, that was huge. This was just the beginning. I was too young to understand or even comprehend how long it would last for. In fact, I don't remember even thinking about that. I didn't care. I still thought I was normal because I hadn't actually interacted with other children my age yet.

That thought had changed once my mom had enrolled me in preschool. I remember sitting on the living room floor one day playing with the cat and getting rid of a hangnail when my mom invited me to go with her to enroll me. She had taken me to this church right down my street called "The Little Lighthouse" where I had been enrolled for preschool and Sunday school. Once I got there, I saw how they felt. They made it clear. They felt so bad for me, and I noticed the children were running around and playing as normal children did.

The one lady was so sweet. Her name was Miss Marge. You would have to go up stairs to get the the main classroom, and I remember her helping me up the stairs everyday. I also remember her making a joke and my mom giggling "oh boy, this is why my hair is turning grey". For some reason, I thought it was cute and it didn't upset me. She was to sweet to get mad at. She had passed away of a brain aneurysm several years later. Only the good die young.

Chapter One: My Roots.

Allow me to introduce myself. My birth certificate states that I'm Alyson Amanda McKay born on May 13th of 1992. I was born in Butler, New Jersey, and I lived with my parents, a German Shepard, and a few cats.

People in my neighborhood seemed pretty close from what I can remember. Even the doggies were close friends. My German Shepard's name was Lance, and he used to love playing with the next door neighbors' gorgeous husky named Shiba. I can't really remember what cats were living then because we've had so many in my lifetime.

I lived a pretty normal and content life. I can still remember my mom waking me up the morning of my third birthday. It was so much fun. I had so many friends then. I am still able to keep in touch with a couple of the old neighbors now thanks to facebook.

Later that year, we had to move to a really old apartment in another town called Midvale. The people downstairs had no class at all. They were such rednecks. Gross.

The place had wood flooring in the kitchen that had splinters, and there were old furnaces which bordered the rooms along the floors that made obnoxious and creepy squeaky noises every now and then. The place was located on a busy main road and was supposedly one of the oldest houses in town.

Not the greatest place to live, but we still had fun. As long as my family had their friends and family to party with, we were still quite content. My parents were so happy then.
My dad had a descent drywall job, and my mom was a bartender. He had fun doing what he did on the stilts and scaffles while my mom enjoyed chilling at the bar with her friends and doing what she was best at afterwards... drinking.

Perhaps that's where I get my love for alcohol from? I believe so. At least we know it's not a problem because I don't abuse it. In fact, I don't think I've ever really "abused" anything. I know my limits, and I use common sense. Stupidity is NOT an option.

Also, here's some good advice for those of you dumbasses out there: NEVER use a needle for anything other than its legitimate purpose! ...but hey, if you're going to be stupid anyway, at least be sterile and clean your damn skin and don't re-use the damn syringe because that's how you get hepatitis. Dispose of that shit properly and put the used ones in a special container in which we call a "sharps container". If you don't have one, break the needle off of the syringe and throw it away. I just thought I might state the obvious to the people who can't grasp simple common sense. I don't know how they are living. Kudos to them.

Pre-face... or knee.

This is my memoir on JRA (Juvenile Rheumatoid Arthritis) in which I have created to slap people in their faces with awareness. I've procrastinated so much on making this because I know each chapter will be quite an emotional journey. I have a ridiculous long-term memory. I will end up remembering and reminding myself of so many unbelievable things while writing this. I want to make this book as graphic and detailed as possible to the point where you can almost feel it, even though the pain was indescribable. Let's just make the preface to be a short introductory, because we all get bored reading prefaces. I know I do. So I'm keeping it brief. Nothing too special. Just letting you know what this novel is all about.

P.S. I will also be mentioning other things besides the JRA itself. I was sick with many other conditions in which it may have led to as well.

*Photo found on DeviantArt taken by Harsh_Reality. I have been on Enbrel for several years on and off, and it works wonders.