About Me and the Purpose of this Blog

I was diagnosed with a rare genetic condition called Von Hippel Lindau when I was 11 years old. It has changed everything about my life. I started this blog partially because I needed an outlet for my thoughts and feelings and partially because I know what it is like to feel alone in the world. This disease has killed everyone in my paternal family and I have to navigate these uncharted waters on my own now...and that's an extremely lonely feeling (to which very few people can relate) so if this blog can help even one person feel as though someone else knows what they are going through, then I think it's worthwhile.

I am currently recovering from brain surgery but I still have many more tumors that will eventually need operating so if you take this web-journey with me, I promise to make it as entertaining and informative as possible.

Friday, March 27, 2015

Life Altering Moment



When I was 21 my vision of life was extremely bleak. I felt wronged and bitter because by that time most of my paternal family had died from a disease I knew I had too. It was not a pleasant time for me. In 2008 I was waitressing at a restaurant and living on my own, albeit with a roommate I despised but it was the first taste of freedom I had had to that point. Still, I couldn’t relish in that fact because I was so preoccupied with my anger at the universe. I did have a pretty good excuse to be cold and disaffected but I was so ensnared in the past that it never even occurred to me to think whether this was how I wanted to perceive my future. It wasn’t until one brisk November night in 2008 that everything changed.
You never really see important moments coming. Maybe the reason they can have such a profound effect is precisely because they creep up on you and your guard is down. I know it certainly snuck up on me. Late that particular evening a friend and I were closing up at work where we were both waitresses, neither of us had plans, so after closing we stayed around, had a few drinks, and shared a pizza. What we had originally thought would be a 30 minute chat turned into a five hour long, life altering conversation. Years later I don’t remember all the details but I do recall with crystal clarity the moment that changed the way I looked at the world. We were pretty close friends but she had only known me in that dark period of time so she asked about what had so jaded me that I was acting this way. In a typical petulant style, I started complaining about everything that had led up to my current attitude. Normally when people heard my story I got a lot of shocked and horrified responses but she looked at me with compassion and simply said “Is this really how you want to spend the rest of your life? You can let this, circumstances that you couldn’t control, ruin your spirit but aren’t you better than that?” It was such a simple comment but it had so much impact on me.

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