If you follow me on social media (and if not, why not? @meredithfirst) you know that I’ve been working hardest in my life at recovering from Late Stage Neurological Lyme Disease. I’ve been pretty open with it on social media as a way of coping. For some reason though, I haven’t been able to write about it in my books or on this blog. I used to wonder why, but didn’t think too much about it and decided that I would be able to write about it when I was ready.
Then one day, during meditation, which has been critical to my survival, I figured out why.
I’ve been ashamed.
Isn’t that insane? I’ve actually been ashamed to have Lyme Disease. Like I had a choice that some stupid tick would implant itself on my head on a Sacramento area golf course in 2004. I don’t even like golf! And frankly, I still blame golf. The only redeeming thing in this whole scenario is I now have something on which to blame my awful golf game.
But back to the shame. When I asked one of my medical care providers (Lymies know, it takes an army of medical providers to keep us trying to live our normal lives – most of whom we have to pay out of pocket as insurance doesn’t cover most care) told me that was perfectly normal. “Perfectly normal” is music to any Lymies’ ears. “Normal? I’m normal?” I asked, as I wiped tears away from my eyes wondering why the heck I was crying at this seemingly innocuous confession.
“The Lyme spirochete is like a parasite and it’s normal to feel dirty when your body has been invaded by a parasite. It’s human,” she said, as she worked to open up my lymph system and drain the toxins that build up as your body kills the Lyme spirochetes (much like how a body reacts during chemo).
I didn’t think I felt dirty but just being given permission to feel shame and release it was huge for me.
Coincidentally (though I don’t believe in coincidences) the next day, my publicist sent me a list of questions to answer for the cover reveal of Gridley Girls and I wrote about Lyme Disease. I’ll attach that article below and hope you’ll read it, as it’s the first time I wrote, in such a public setting, of what it’s like to try and maintain a life and career with a disease that ravages your body and mind. A disease that separates your mind from your soul in a way I never knew existed. A disease that has a considerably high suicide rate among it’s victims. A disease that turns you into a shell of your former self. A sucky disease that needs to be stopped before more people lose their lives, their livelihoods and their minds.
But never their souls. That is our saving grace.
Our souls are forever.
That is what keeps me going. Keeps me writing. And keeps me alive.