Not Another Statistic

Not Another Statistic

Up until two days earlier, I had never heard of Von Hippel Lindau, hemangiomas, contrast MRI’s, cold PDT lasers, or angiograms. If I were to fast forward two days later, these words would all become routine vocabulary amidst the backdrop of worry Von Hippel Lindau paints.

On the first day of October, I got yanked out of school to visit the Children’s Healthcare center at Town Lake for something called an MRI of the brain and abdomen with contrast. To me, MRI’s were something one got if they were injured in sports, and they usually took about an hour, needed no IV, and did not leave one with a migraine and shortness of breath from being told when to breathe. For my MRI, I got a three hour long session with the beige cocoon, a blood test and an IV of contrast fluid which feels like someone is sending acid into your veins, a special helmet for my head to stay still in, and a special headset so I could be told when to breathe in and out. I also got to watch Monty Python and the Holy Grail twice, but there’s only so much Graham Chapman one person can take in an afternoon. From then, it was time to get milkshakes at a local ice cream place, and go home and watch the phone like it was a bomb that went off whenever one turned away.

Twenty four hours later, I was unofficially diagnosed with Von Hippel Lindau, or VHL. Tumors in the eyes, spine, and pancreas is a pretty definite answer to the VHL question, and from there, my dreams were shattered. I would not be able to move to an area more than a half hour from decent medical care. I could not live on my own due to worries about what would happen if I went blind. I could not have children without running a high risk of miscarriage, cancerous growths in my uterus, or the child ending up suffering the same fate as me. I was not going to die at the ripe old age of one hundred and three like how I had planned, more like forty or fifty or sixty three. Reality sunk in and hit my parents like a kick to the gut. I would just be another statistic in the medical world, just another VHL mutant who would kick the bucket from renal failure, pancreatic cancer, or some other not too fun activity sometime when most of her friends would be becoming grandparents, reaching middle age, or saving for retirement. Reality had not hit me yet. Reality would not hit me for quite some time.

As a result of the diagnosis, I went a bit crazy. I deemed