Nichole J

In December of 2011 I was diagnosed with a rare disease, Chiari Malformation. Chiari Malformation (CM), which is a neurological disorder. Those with CM have structural defects of their cerebellum where part of their brain descends out of the skull into the spinal area.

My health journey however started long before December of 2011. Those with rare diseases struggle with finding proper diagnoses. This can lead to many months and or years of hopelessness. Throughout this time people are either treated for something they don’t have or told there is nothing that can be done for them. I experienced both ends of the spectrum.

For 2 years, starting in the summer of 2009 before my senior year in high school, I was misdiagnosed. I remember going to numerous different doctors appointments receiving the run around and no answers. I began to lose hope and at one point I even felt as if maybe I was just a hypochondriac. However, I was blessed with parents who believed me and never stopped fighting. They didn’t take no for an answer.

These were two of the hardest years of my life. I had no understanding of what was going on with me. All I knew was I didn’t feel good and nothing would help. I would describe the pressure in my head as a balloon in a jar that you kept putting air into even though it could expand no further. I had to stop all types of physical activity, including dance, which was my passion and outlet. My life came to a complete halt out of the blue.

Fast forwarding to December of 2011, I went for my bi-yearly MRI and we received the ominous news that I had Chiari Malformation. We now knew what was affecting me for the past 2 years of my life which was somewhat of a relief but we had no idea of what it was which began a whole new element to my health journey. And since knowledge of rare diseases is not abundant it takes time to find the right place to get help. My family and I found the Chiari Institute, in New York and we booked an appointment for July 23rd. We found out on that day that I was a candidate for surgery and that was my only hope of finding relief, but that the choice was ours. After talking about all of the pros and cons we decided the pros won out and I would purse a surgery date.

Feeling a range of emotions we patiently awaited August 14th to come. As I went back for surgery we could of never anticipated what happened next. I actually ended up having 2 brain surgeries 2 weeks apart, August 14th and August 28th. There were some complications after my first surgery and 12 days later I started to leak cerebrospinal fluid out of my incision, which had me on an emergency flight back to New York and the OR with my life in jeopardy and my future unclear.

Today, almost 5 years later, I am doing great. I do not simply have my passion of dance back in my life, but I am blessed with a dream come true everyday dancing for the NBA and the Detroit Pistons. I no longer am just going through the motions much like I was, but I am LIVING and LOVING life.

Life happens and we can either run from it or run with it. Running from it seems like the easiest route but running with it helps us to become the person we are meant to be. I personally choose to embrace whatever is given to me. It is not always easy and I have my days, which are a struggle, but when it comes down to it I have never regretted facing a challenge. Challenges help us grow and develop into the people are we meant to become. They test us and push us to our limits, sometimes until we break, but the key is that to come through it you have to go through it. I’ve learned through this journey that everything has a purpose and a time even though we may not understand why at the time and sometimes we never will. Most importantly, I’ve learned that life is worth fighting for. I promise if you keep pushing through the tough times, even when all hope seems lost, you will be thankful you did.

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