Juvenile Rheumatoid Arthritis

Emma 2001 USA

From the age of seven, I set my heart on being a dancer. There was just something about it that captured my interest, and I soon fell in love with the magic of the stage. I was also a pretty avid athlete. I played basketball, tennis, soccer anything with a ball basically and that sense of competition and motivation embodied the essence of my personality. They completed me, made my life worth living.

However, as with my physical well being and mental attitude, these treasures of mine were soon forced to collapse like a balloon with a needle stabbed through it. This needle went right to the heart.

Slowly, the enemy forced its way into my innocent body, always with increasing intensity and gradual succession until finally it won the battle. However, I was determined to win the war.

Bed-ridden, I would cry in my own crippled sorrow and misery, my body involuntarily surrendering to this evil demon. Slowly but surely it ate away at all the meat of my body and all the sanity of my brain. All those years of strenuous dancing and muscle tone gone in the blink of an eye. Fleeing at its mercy, my strength and independence followed quickly behind. Now it was a struggle just to walk, eat, or most importantly to be the me I thought I was. The strong Emma. The Emma who never gave up. She was gone, and in her place was a girl I didn’t know.

So, the nightmare of my life kept playing itself out day by day, overpowering my ability to choose and my right to be myself. When something so painful and severe as this happens to you, your mind goes into an angry, confused state of being. Depression inevitably follows, and I would find myself simply not wanting to be. Not necessarily that I wanted to die, but just to get out of this heart -wrenching reality which I had to call my life. So, because disappearance was not in the cards, I degenerated into a string of “Why me,” “It isn’t fair,” and a feeling of being alone. Not to say that my family wasn’t there for me every second of every day, because they were. I’m talking about all the kids who went to school every day, going to their daily activities and leading normal lives, never once having to think of the horrors that exist in the world. I, on the other hand, had to live through it every day. While they could acknowledge it and then turn their backs, I was stuck like paper to glue, and there was no getting out. No, that’s a lie. But the way out was a far ways away, and something which you cannot see is extremely hard to live for.

Soon enough my body became totally crippled, and it not only hurt to be inside it, but also to look at myself in the mirror. My knees poofed up bulging out of my twig-like legs. My arms were paper-thin as well, and at the end of them hung a cluster of swollen knuckles and sausage-like fingers. My ankles were puffy and red, and my feet tender to the touch. I had grown terribly pale from months of not seeing the sun, and large, dark circles formed under the rims of my eyes, encasing my face with a ghostly appearance.

My elbows hung close to my side, contracted for so long that I could not straighten them out. I almost looked as if I had been a victim of a concentration camp, and this weak invalid began to take over my life.

Thankfully, after many months of pain, weakness, and hardship I really began my road to recovery. Right now, sixteen months after I first started the antibiotics treatment,* I am doing extremely well. I am now able to go to school every day, am regaining independence as a person, and simply able to live my life once again. However, this is not a story that ends in a miraculous quick recovery, and a clear-cut “happy ending.” I am still not able to play on a sports team, and I have yet to step into a dance studio again. Even though I don’t have nearly as much pain as I used to, I do not feel “normal,” and although I have gained a lot of my strength and flexibility back, its all relative and my rehabilitation stage is really just getting started. Hopefully, I will be lucky enough to go into remission and gain back the lost components of my life. For right now, I am trying with all my might to be thankful for things I do have, and to not let the aspect of the unfairness and empty answers get the better of me. For, along with the hurt and suffering, came a realization of myself. I was faced with what could be the hardest time in my life, and I was able to work up the strength, courage, hope and simple persistence to come out on top. So even if I never put on another ballet shoe, or slip on another basketball jersey, I will still have the satisfaction of knowing the heights I am capable of climbing, and hopefully, one day conquering. And, I know, looking back on this, I will be proudest one day to be able to say I survived.

Emma is doing very well on antibiotic therapy and almost 5 years after this was written, attends college as a full time student. Presented during an RBF luncheon on Cape Cod. She is still doing well more than 5 years later.

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