I've won all the wrong kinds of lotteries. Those one in a million chances - chances of something going totally and completely wrong. I probably would have been the only woman to get her number called in the Vietnam draft. I'm just THAT lucky.
My first big "win" came at age 16 when I was diagnosed with a paraganglioma tumor in my left carotid body http://en.wikipedia.org/wiki/Paraganglioma Oh ya, my spell check doesn't even believe paraganglioma is a real word.
AWESOME! First of all, this type of tumor is extremely rare. Secondly, I was 16. This was virtually unheard of. So here I am, in 10th grade with a condition that is most commonly experienced amongst 80 year old llama herders in the Andes mountains, trying to apply to colleges and not totally ruin my life in the process.
Thankfully the 16 year old brain does not comprehend such serious life events in their entirety, so I floated along, distancing myself from the whole thing. I went on to have an insanely scary surgery which, luckily (ok, so I do get lucky lucky sometimes), left me with very few physical side effects. All I cared about was going back to dance class 2 weeks later. Facing mortality, let alone my own mortality, at such a young age changed me. It's difficult for me to explain to other people who haven't lived through such a formative experience.
And yes, this is only the beginning....
This blog will chronicle my experiences with years of misdiagnosis, migraines, Celiac Disease and my subsequent gluten-free life, trigeminal neuralgia (a pain so wonderful it's been dubbed the "Suicide Disease"), and a mystery condition that has yet to be diagnosed but has kept me out of work (and play, for that matter) for over a year.
Don't think this is going to be Debbie Downer's Depressing Diary. I AM HAPPY! Well, most of the time. There are so many things and people in my life that I love.
I would give almost anything to feel healthy again and I'd love to take back my tumor and the surgery, but such things aren't possible. I have to learn from these experiences and make the most of them, however cheesy and lame that may sound. I truly believe I am a better person for all of this.
I wear my scar with pride and have never considered getting rid of it. Why would I when I get to tell random, rude strangers that it's from a knife fight?!
So check back if you want to know how experiencing something considered to be the most excruciating pain known to humankind might actually make life better. Or if you want to know the benefits of life without birthday cake.
Great writing and keep writing. Not unlike you I had a 19 lb, cystadenoma on my left ovary at the ripe young age of 21...It left me traumatized and subsequently ill for many years. You are on a journey and the first sign that have come so far is your humor about your scar and the rude folks that ask. You ARE NOT your illness or the things that happen to you. You are the person you are in your heart and how you treat the world and those around you. You just "got it" earlier than most of your peers..they're still worrying about shoes, clothes, etc (not that you don't like those things) You just got the big picture a lot earlier. AT 47 I now look at my illnesses, tumor, surgeries, like stamps in a passport. I want to be well and feel well and I will do everything that I can to seek the best treatment and doctors but if I miss out on happiness it's my own fault...and bravo to you for figuring it out so early...wish I had been so intuitive at your age.
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