It’s so funny how when I’m napping, or laying down right before bed, and my mind wanders, I create the best blog posts! But when I come to the computer – zilch. 🙂
Anyway, here I am. I am a girl with a blog. A blog about my life with Cowden’s Syndrome and Lhermitte-duclos Disease. But what makes me different? Do I even want to be different? Do I want to stand out? There are a zillion blogs out there. Food blogs, music blogs, book blogs, fashion blogs, ad nauseam. Then, there’s just me. A health, medical, blog. A tiny goldfish in the Atlantic Ocean.
Sometimes, I feel an (unnecessary) pressure/responsibility to write. Tweet. Get the word out there about CS and LDD. I mean, these conditions are heavy, you know? People need to KNOW about this! And as I network more online and connect with others who have rare diseases (or Cowden’s Syndrome) I am never at a loss for words such as, “Man, what if my doctor had known about THIS?” So, am I doing any good? Does it really matter if I am or aren’t? Isn’t this blog for me? Or is it for a greater good? I was triggered by something bigger than me (obviously) and now I feel a passion to do something. Does that make sense?
I know I am not going to save the world. Or, change the face of medical staff and what they know/learn/study in school. (I mean, what if Dr. K hadn’t seen a gangliocytoma when he was training? Would he have even called out Cowden’s Syndrome?) That may have just been luck, but regardless, I am grateful to him. (And, I guess in a roundabout way, I am grateful for the brain surgery.) I want to do something. More. I just don’t know how. I used to have (what I thought) was this nice, quiet life and I went around with my head in the clouds. Really. I did. I didn’t know hard. Or fear. Or Pain. Or Anguish. Nor did I know healing.
But then I think, “What about the other parts of me? The Church part; the family part; the (when I can) employee part; the (hopefully, one day) significant other part?” THE NON-HEALTH PARTS – Do I have passion in those areas of my life as well, or am I only passionate about getting the word out about CS and LDD?” I guess I do not want to get stuck in the wayside of the zillions of blogs out there.
I want to be different. I want to be loud and proud ABOUT ME; not just brain tumors and rare diseases. I know it’s about finding balance; my wish is to be a well-rounded person regardless of what my body is doing.