A virtual contact of mine has a “motto”, if you will, that I noticed a while back and it really struck me. More so than ever this last weekend at the Global Genes Patient Summit and Gala. Beatingcowdens has a tagline that reads: “Rare. Invisible. Real.”
Being surrounded by ahhhh-mazing people who have created foundations and have utterly blazed trails in their rare disease community was huge for me…
[And I have my blog.]
I felt a bit like a very small goldfish in the Pacific Ocean.
So I decided I needed my own tagline for here and for my Twitter account. I’m not sure if that’s the right word or not. But, that’s my word for it. And not that my tagline is on the same scale as rare disease foundations mind you…but it’s my start. It’s something. It’s mine.
A few months ago I said to a family member who was going through their own health scare, “There’s a lot to be said for hope and miracles. I’m proof of that.” Coming through the other side WELL of a 13 hour brain surgery is a miracle indeed!
But more than that, and I didn’t really think about it until this weekend. I have the word “hope” in my blog title. When I created this blog over 2 years ago I was just diagnosed with a brain tumor. I didn’t comprehend the magnitude of malignant and benign, and I sure as heck didn’t even KNOW of rare disease anything. But I knew I needed hope and I wanted others to hope for me. Hence, the title was born. 🙂
When I got home yesterday I decided to change the tagline to, “There’s a lot to be said for hope and miracles.” And it’s on my Twitter bio too. You know, sometimes I don’t feel very hopeful, I’ll be very honest here. But I know when those times are around I have to remind myself of the miracles that are all around me (namely Nephews #1 and #2!) and pray the hopelessness passes.
And it usually does. It might not be as fast as I want – but it does.