Oh…. Yeah.

13 06 2014

There’s this thing I forgot all about. You know when you forget stuff that you think should be important enough to remember? Like the year you got married, or a fifty dollar bill in a coat pocket, or how much you used to love studying British literature because of that one professor who made it come alive…
This thing I forgot, it got lost. In porphyria. In motherhood. In budgeting. In laundry. In potty training and breastfeeding and doctors appointments and pain and stress and fatigue, in wine and Cymbalta, in isolation and play dates.
But, y’all: I remembered it last night.
What I remembered is: that music is at my cellular level. It is my stardust. I am made of it, and it of me. It tingles through my tissue like blood pulses through my veins. It is home to me. It is The Thing. Of my life. My Thing. And for years I was intimidated away from letting it happen, and had excuses of no time, not the right people, not the right equipment, no money, a disease, kids… All this shit that in my mind meant that I’d missed my boat and that was that. I lived ten years thinking I failed my potential. It never occurred to me (and WHY DID IT NEVER OCCUR TO ME) that I did NOT miss my chance. I’m not too old. Too tired. Too busy.
I remembered last night that making music wakes up little tiny places in me that have been dead for the longest of time. Like, I sat on my foot for ten years and it went numb, and last night it finally dawned on me to just stop sitting on my foot, and the feeling came back. And it was uncomfortable and tingly and tickly for a few minutes and I couldn’t put weight on it, but when the blood filled up the space again, I was all like “oh yeah! I have another foot! I can walk!”
It was like that. I found my other body part that had gone so numb it disappeared from my psyche. And can I just say, ahhhhhhhhhh.

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4 responses

14 06 2014
Allison Linner

Thank you for this post Sabrina 🙂 it really is so difficult to distinguish yourself from all those things you mentioned–especially porphyria. It just becomes a part of you, but your post reminds me we can never let it define us. Congratulations on your foot waking up 🙂

25 10 2014
Barbara Bradbury Wilcox

Music is the breath of life, as it has been all my life. Do enjoy your return to it.

25 10 2014
myswelldisease

I have enjoyed, immensely, my return to it. I will post some things on this blog soon that I’ve recorded with a band, Cryface, I’ve been working with in the studio. It’s really beautiful music, and I’ve loved being a part of it and watching it all come together.

7 01 2015
Cat Royer

I found your blog by searching for Lupron and Porphyria, as I have a bff with hcp. I read it all in two days. You have given me insight into her life, as I know she leaves a lot unsaid. Thank you, and I look forward to future posts.

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