Saturday, January 25, 2014

…how do you live?

This post is actually a reprint. It was originally written as a blog post inMay of 2013. But, I submitted it as a guest blog entry for cure magazine and they asked if I would hold off and let  them publish it in the winter edition. As you guessed, I held off and it is printed in the current Cure magazine. For those of you that missed it, here it is.

As I look over what I write so much has changed- My vision has significantly deteriorated, as well as my left side.

This week, my parents are moving my room to the first floor because the stairs are becoming a safety concern. I'm ok with it but it is just hard to face how sick I am. I hate being so reliant on others but I need a lot of help these days. I'm so lucky to have patient and caring parents. I couldn't do this without them.

"How do you live?"
Will it rain today? Will I get a bonus this year? To an extent, we all live our lives with a level of uncertainty. But some questions are unique, and harder to answer. Will I wake up tomorrow and be blind?

People who meet me in public never know that I’m sick until they are told. Even at the hospital, I have wondered if those in the waiting room think I’m accompanying one of my parents. Not until they see the tape on my arm from the IV do the suspect that I might indeed be the sick one.
For most people, they do not need to shut their eyes wondering if it is the last time they will see. But for me, the doctor’s aren’t able to estimate the probability that I could go blind at any moment. There is a new tumor that is growing on my optic nerve that has already stolen all vision in my right eye and threatens my left eye with every passing day. More than likely, the optic nerve tumor came from a loose tumor cell from the original brain tumor. Even the most recent treatment, gamma knife, has the ability to stop the tumor but also to at anytime take all of my vision.

It shocks people to learn that not only am I recently blind in the right eye but that two years ago I was diagnosed with an inoperable brain tumor, two and a half inches into the middle of the brain. But you look so good, we would never have guessed - they all say and shake their heads.

The right eye still responds when I move it; looking different directions and at people and scenery, but drawing nothing in. It still looks perfectly green.

How do you live your life? I live mine with both eyes open – even if only one takes in the picture. I eat dessert whenever I want too. I take my 6-month-old puppy for a walk each day. I close my eyes at night knowing that I was blessed to really see what I saw that day – the flowers and herbs that I potted with my mom outside, the tv show my dad and I stayed up late to watch – the card a friend sent.

In the last two years, I’ve made adjustments to living. I’ve become an advocate for young adults living with cancer through an organization called Stupid Cancer and I have been their largest individual donor. I’ve raised over $65,000 for the National Brain Tumor Society and served on their NY Walk Event Board because I truly believe that research saves lives and every dollar makes a difference.

With this most recent loss of vision, I’ve adjusted to walking with my right side against subway walls so I can’t be startled. I’ve moved to corners of the table so that I can take everyone in. But I’ve never stopped living. This summer I plan to go skydiving and spend a week with family and friends at the beach. There is no guarantee that I won’t lose my vision before I have a chance to do those things.  And if I do, I’ll still feel the salt water on my skin and the rush of jumping and flying through the air.

Sometimes you don’t need your eyes to look at your blessings. How do you live your life? Do you see what I see?

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