What it's like to live with a progressive neuromuscular disease

Saturday, June 21, 2014

Birthdays, Blogiversaries and Blankets

Today is my 39th birthday and my blog’s 3rd birthday. As a gift to both of us, I decided to kick it up a notch and graduate onto a new and improved platform.  One might wonder why I didn’t do this sooner (considering all of the snafus and technological hiccups I encountered with Blogger).  Truth is, I think a part of me never wanted to have to invest too much effort in a blog for a disease that I wasn’t “supposed to have” or that I simply didn’t want.  But since HIBM seems to be here to stay, I figured I may as well go for it. And take one more small step along the increasingly longer-than-expected road to acceptance.

In addition to unveiling my blog’s new look today,  I wanted to take a moment to thank you for following along with me these past three years and for making it feel so safe to be so open and honest here. From the very first post I published (with such trepidation) to now, I have been reminded of how much love and goodness exists out there. I took a risk and exposed myself fully, having no idea how people would see me, only to discover a circle of open arms holding out warm, comforting blankets should I need them. I felt so much closer, more connected to the people in my life, especially those who wanted to but didn’t know how to approach me around my disease. I was reminded in the most real way that what matters most in this world is true connection to others- authentic meaningful relationships based on honest human experiences. And finally, that a little vulnerability goes a long long way.

Please don’t take it from me. Try it out for yourself. I promise you, the enrichment to and enhancement of your life experience will far outweigh the risk and all the discomfort that can come from truly letting your guard down.

I mean, let’s face it, how else can I explain being one of the happiest people I know in spite of such tragic medical circumstances?

Oh and one more thing…If I can still dance by my 40th birthday next year, I’ll be having a full-on, blow out bash and I’ll expect to see you on the dance floor right next to me…

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

About me