What’s In A Name?

It was a long, winding road to find my blog title. Until one day it just clicked.

You can ask my kids, all of them, how I keep track of things. I scribble. On random pieces of paper. On the back side of a utility bill. On a napkin. Whatever I can find in the moment. Yes, I need an intervention. In life, I’m kinda, sorta organized, but in the land of paperwork I’m a train wreck. I’ve purchased scrapbooks, baby books, filing systems, notebooks that I labeled and designated for my writing. And I started. It was going pretty well. Then the whole thing went terribly awry. I’m not really sure what happened. But finally, at age 59, I’ve decided to embrace this flaw and these stacks of paper, as endearing, and just go with it. When I’m gone my daughter’s will each get their beautiful, partially finished scrapbook, and a shoe box filled with scribbles, a treasure trove of delight, from their first words to my innermost thoughts about life, what tried to break me and what made me fierce. Yeah, and probably a bunch of other stuff that means nothing at all. Hopefully, they’ll laugh, like they are right now, reading this. 

And there’s also this. I’m sick. With a plethora of autoimmune crap that pretty much gets on my last nerve and requires undaunted attention to my health, diet and well being, something I have not even begun to get really good at it, except when I am. It affects my muscles, joints, connective tissues, fingers, feet and anything else it wants. I have a love hate relationship with this illness of mine, have learned to become friends with the pain, let it teach and guide me, all at once wishing it would just go away already so I can get on with my life. 

A few years back, I had a really bad flare-up episode at the Blue Note Grill, in front of everybody who knew me, and where, for the first time many people I loved realized I had some health issues that resembled a drunk girl at a frat party and required a small army just to get me back to my seat from the dance floor. Scary shit! As difficult and humbling as that was, I felt compelled that evening to share some of my experience on Facebook. Let me just tell you that I was overwhelmed by the comments and the private messages filling my inbox from my very vulnerable expression of the heart . Suddenly I was an example of someone who goes out, vibrantly enjoys life, smiling widely without hesitation, while dealing openly with challenging circumstances. I realized then that this issue deserved a healthy, open conversation in all CAPS! Truth is, I struggled with how to do that. I’d been considering a blog for a while but didn’t know if I wanted to write about my disease, incite any negativity, give this a voice that’s bigger than me. I sure as shit didn’t want this to define me. 

But it is part of me, and it’s here to stay.

After my embarrassing public incident, and subsequent responses, it struck a chord in me when a dear friend said “This pain may be the yellow brick road to your purpose.” I finally realized that maybe, just maybe, that’s what this was all about. It’s speaking to me! Screaming, if you will, that I have a voice, a message, and that all those things I’ve scribbled in a journal when I’m at my wits end, may add up to something that you can relate to, so you feel less alone.

I have pain. Every. Single. Day. There are times when I am drowning in my affliction and I can’t see anything but that. It takes a great deal of intentional, sustained energy to keep moving through life during those endless days or weeks. I make plans around the way I’m feeling, pace myself, just so I can go out or even do something as basic as make dinner. Maybe you need to know what it’s like to be me. To go through a day like I go through. To muster the strength and energy just to get up. Not for pity, not for sympathy. But because, I am not the only ‘sick girl’, the only one facing fear and uncertainty. Sadly, SO MANY PEOPLE, go through life feeling defeated and deflated by chronic illness or other ailments, alone with this, ashamed of this. That’s not okay. I can do something. Honoring all of what I experience has allowed the revelation that I am so much more than what is happening to me. So is everyone out there who is struggling. With deep resonance for the brave people who have entrusted me with their stories, I will put my pride and shame aside, lay my soul bare and share my experience, my degree of discomfort and, here’s the good stuff, my victories! I have lots and lots of them! I will, through my own ups and downs, give you my insight on how I show up in a great big chaotic world when my world often feels so small. My mantra has become…

                            My body has pain, but my life has JOY!

So, here it is. What’s in a name? 

An invitation for you to embrace it all, to be okay with the way you feel. Permission to experience all your humanness, your fragility and fragmented self out in the light, not in the dark corners of shame. 

                                                      A Rebel Yell!!!

To live your life out loud without inhibitions or labels, self imposed or societal, that would dare hold you back! To remind you that this is your one and only freaking life, you are multidimensional, and can be empowered by all the broken and beautiful things at once!