Just the Beginning

Chapter 1

It’s all I wanted. The disgusting hairspray, the overdramatic mothers and daughters, the ballet costumes only made for a size zero, the unbearable, intense lights in your eyes and the ruthless competition for the lead role that lasted less than fifteen seconds, just to impress a group of people that could make or break your future.

Sound fun? It was me. I loved it. Every minute of it.

Performing allowed me to say all the things I couldn't say. The movement was beautiful, the music was uplifting and the dancers were inspiring. We all may have been competing for the best spots, but when one of us stepped on the stage none of that BS mattered. We were all so special. We could make the members of the crowd stand on their toes. We had a gift not many people have, and would kill to have. If I could go back, I would never take performing for granted again.

When I was 16, dance was the only thing that brought me genuine joy. I loved the hairspray. The dramatic mothers were cringe-worthy but hilarious. They acted as if they were the ones performing! The costumes were beautiful, and I lived for the lights. They were like the sun glistening on my face. The minute they turned on, my adrenaline did as well. I adored the people I performed for. They held my future in their hands, they were my God. They gave me gratification, criticism and, hopefully, a one-way ticket to a career in the Big Apple. The girls that I performed with had a bond no one would ever be able to understand. No one knew what we had been through in the days leading up to a performance. We laughed, we cried -- but we mostly cried, secretly knowing we were all competing against each other for the best parts. We would keep each other’s secrets just as fast as we’d stab each other in the back for the lead role. From the demanding workouts to the strenuous bar routines, the life of a competitive dancer is unwarranted, and I wouldn't have traded it for anything in the world. It was my utopia just as much as it was my hell.

At that time, I thought this life would never slip away. How naive was I? I guess you could say I was asking for it. I was so close, but where’s the fun in that? 

“Break a leg!” my teachers screamed as I entered the stage for what I had no idea would be the last Nutcracker of my life. Unfortunately, with the agony I was going through, a broken leg would've been less painful. The days leading up to this performance were some of the most torturous days of my life. The pain my body was going through was excruciating, and it was much deeper than the soreness I had diagnosed myself with earlier. It was internal as well as physical. I felt like I was having an out-of-body experience. I wasn’t myself.

On days when we had rehearsals and I wasn’t performing, I would cry my eyes out in the bathroom because the pain was so unbearable. Silently, of course, so that no one could hear. I would then proceed to pop some aspirin and hope to God I could get through the next six hours, only to do the same thing in my own house. My routine had become depressing and crippling. I couldn't eat, I couldn’t sleep. I felt like I was being tormented by own body, if that makes sense, especially when I began to experience abnormal physical signs as well. The details are graphic, so I’ll spare you. I began to think that I should see a doctor, but it was my junior year in high school. More importantly, it was my junior year in performing. The year everything could change for me.

I had finally got a lead part in the Nutcracker. I kept thinking that Scouts from Julliard, NYU, and the love of my life, Alvin Ailey, could be watching. I don't mean to sound cliché, but this was my moment. My chance to be part of something greater than myself. If that meant popping aspirin after aspirin and crying myself to sleep at night, so be it.

I was losing sight of why I started dancing in the first place. I had to constantly remind myself that I would see a doctor as soon as my performance was over. It’s not like it could get any worse, right?

What the hell did I know.

* * *

Performance day had arrived and I thought that with all the excitement and nerves, my pain would magically go away, but as you all know by now, I'm not that lucky. The pain only intensified, and I was running out of free moments to slip away to the bathroom. Meanwhile, it was time for me to show everyone what I was made of. At that time, I didn't know what that was. The one thing I expected to be there for me that day was failing. My body was in agony. It was like I had no control over anything.

No matter how many aspirin I took, the pain was still chronic. It felt like my skin was on fire. I could barely sit down. Everything felt raw and sensitive. I could feel something wrong on the inside, too. The greatest day of my life turned out to be a day I couldn’t wait to finish. You gotta love the irony.

Despite my constant need to pass out, I managed to perform. On the verge of throwing up every time I entered the stage, my passion outweighed my pain. I felt as if I had an obligation to perform for my family and friends, or they would love me less. The logic is skewed, but it made sense in my mind. All of my hard work had lead up to this moment. I was going to finish what I had started. I didn’t want to let anyone down.

But who was I letting down? My mother? My teacher? The girls? Just myself, for letting my agony go on for this long. The worse part was that I couldn't tell anyone. 

After the performance, I should have felt a wave of pride and accomplishment like all the other dancers, but all I felt was relief and great deal of sadness because I didn't deserve adoration or a celebration. Something was wrong with me and it wasn't just going to go away. As days went on, and I had a small break from performing, I took this opportunity to see what the hell was going on.

The pain increased, and so did my need to finally tell my parents what was going on. Obviously their first instinct was what mine should’ve been all along: I needed to see a doctor.

I was hesitant for obvious reasons. My luck was changing drastically, and this was the last place I wanted to be. After everything I had gone through, sitting in the waiting room for those fifteen minutes was the most torturous. I had so many butterflies in my stomach, those butterflies had butterflies. I had a knot in my throat the size of a pear. I couldn't breathe. I knew I was getting bad news. You always know when you’re getting bad news. Either my life was ending, or my career was. Either way, I would have given anything to not endure the next twenty minutes… or the next six years.

Chapter 2

Doctor’s offices… they all look the same after a while. They become less and less special. After my diagnosis, each one became less unique. My once-a-year physical turned into weekly visits of painful blood work, medicine refills, and small talk with sickly children I suddenly had a lot in common with.

Catching on yet? It’s ok. I didn't for a long time. 

Rewinding to my emotional roller coaster of a doctor’s appointment, like the ones you see on the Lifetime channel, my doctor had told me I had Lupus Nephritis. How could two words that I had never heard of suddenly be my problem? The audacity. I wanted to be dramatic and accuse the doctor of messing up my tests and demand new blood work.

What was the point of that? To delay the inevitable.

It was like a bomb. One of those disasters where only cockroaches survive. I was silent. I had so much to say that I couldn't speak at all. Words literally wouldn't come out of my mouth. My doctor was talking and all I heard were the words “life-changing.” I didn't want my life to change. I liked my life, as middle-class privileged sixteen-year-olds usually do.

Don't laugh at me. I wasn't a normal sixteen-year-old. I had my whole future planned out, but the universe was laughing at me. I was getting too comfortable, I guess. The emotions I felt in that moment are unexplainable. But the one I felt the most, the one that was absolutely clear… was rage. 

Before I could even have a moment to breathe, let alone comprehend what was happening, the treatment process began. A typical scene at my doctor’s office would usually just include checking my weight, height, and blood pressure. After that, I would be on my way. But things were different now. Reviewing my bloodwork and shoving different medications down my throat were the new protocol. Everyone asked me how I felt constantly, and painful surgeries were used to collect information that seemed to be the same every time. I had waited so long to get tested, the Lupus I didn’t even know was there was getting worse.

I was admitted to the hospital shortly after that to see how far the Lupus had spread. Since I was going to spend some time there, I thought maybe it would be a good time to research what the hell Lupus Nephritis even was. “An autoimmune disease that can attack a specific part of your body.” In my case, my kidneys. How sexy.

My first thought was that I didn't deserve this. I shouldn't be here. I’m sixteen. I should be worried about boys, parties and choosing colleges, not pill boxes.

According to my doctor, my kidneys were deteriorating. Fast. Nobody could give me an exact time-table, but my doctor’s first response was to pump me full of steroids and hope for the best. Just like a hospital to make me feel even worse than I did when I came in.

Feelings aside, I had a career to think about. I didn’t care about my health or my kidney failure. I didn't even believe I had Lupus, honestly. I was a teenager, and a dumb one at that. I was immortal. Period. By my fourth day in this personal hell, it was time for me to get creative. Say whatever I needed to say to get myself the hell out of here. My parents weren't going to do it. It was every man for himself. 

* * *

You'd be surprised what you can come up with when under pressure. The steroids were making me weak and foggy. I had to stay sharp if I was going to convince these doctors that I was well enough to leave. It was time for me to prepare my audition tapes for colleges.

Lucky for me, my negotiating skills (or lack thereof) didn't even see the light of day. My scheming came to an end as I heard my doctor say that it was time to go home.

As I was anxiously packing, he talked to me and my parents about the medicine I would have to take, the life changes I would have to adapt to, and after that everything was a blur. All I was thinking about was how the other girls were in the studio increasing their skills while I had stuffed my face with mediocre pudding for four days.

When I arrived home, my parents offered to set up my pill box to help me get organized, and to get them off my back I told them I would do it in my room. As you can probably guess, I didn't do a damn thing. Actually, I still take my medicine out of a bag till this day. As my dad would say, I love learning things the hard way, but I digress. 

I continued to dance, attend rehearsals and go to school. Each day was harder than the last. Dance involved preparing for auditions while I hid my fatigue and extreme exhaustion, a side-effect of the pills being shoved down my throat for my well-being. The harder I pushed through, the worse my performance became. I could see it, the girls could see it, and my teacher could see it. Of course, they acted as if nothing had changed to spare my feelings, knowing damn well that everything had. I was no longer a competitive contender. I couldn't keep up with the semi–professional level girls anymore. I couldn't even keep up with the basic-level girls anymore.

Losing your talent is like losing your superpower. You no longer feel special. You lose your place in the world. I lost mine the minute I had to step aside during a simple floor routine to catch my breath. Unacceptable. Pathetic. In my eyes, if I wasn't competitive, exquisite, or at Alvin Ailey-level, I wasn’t worthy of dance.

I slowly began to peel away from my one thing that brought me stimulation as it became the thing that put me into the deepest depression of my life. At first, I thought that if I put enough passion in my routines, I would go numb to the pain.

Like I said, I like learning things the hard way.

Chapter 3

Do not let me fool you. This isn’t some fairytale where I beat my depression, become the poster child for Lupus Nephritis, and start my own campaign for young people like me to prove that you can have Lupus and still live a beautiful life. This wasn't the movies. It was reality. My reality. And unfortunately for me, I wasn’t allowed to quit school the same way I quit dance. Believe me, I tried.

No one really knew what was going on with me, except my close friends, of course. They did their best to be there for me and understand, to the best of their ability, what I still had not begun to fully comprehend. And this was just the beginning