Health & Wellness,  Lupus (SLE)

Memory & Music


“We’re going down, down, down, if that’s the only way,
2 make this cruel, cruel world hear what we’ve got to say,
Put the right letters together and make a better day”
–Prince, Alphabet Street; Lovesexy (1988)

I am departing from the chronic illness discussion today, because a big part of living with a chronic illness is that it is chronic. It is always there, no matter how life is going at the moment (okay, I’ve had better times, but I’ve certainly had worse ones), or whether it’s raining (not at the moment, but I live in Ohio so, that could change), or if it’s Tuesday (it’s not, it’s Friday, and oh wait, yup, still have lupus, fibro, hyperparathyroidism, thyroid disease, and now, most likely, small fiber neuropathy in my legs and feet).  It doesn’t go away.  My message this week is that my disease(s) or your disease(s) are going to be there no matter what you do and what you talk about or don’t talk about.
So, with no offense meant to my more tender readers, if in fact anyone is reading these musings, fuck it. I want to take a break from stupid diseases, diagnoses, symptoms, and survival. I want to talk about Prince.


The Great and Powerful Purple One passed away a few days ago and like a music lover, when an artist whose work I have loved dies, I went on a listening binge. I started pulling out album after album, metaphorically speaking, no one “pulls out albums” anymore.  We click on a song and it plays, pristine in its sound quality with no crackles or skips. I feel like we have lost something in the ritual of listening to music with the advent of technology, but that is a topic for another day.
I was 12 when Cyndi Lauper released She’s So Unusual.  I replayed When You Were Mine until the tape warped and Cyndi’s quirky soprano was stretched and garbled. I cried to that song as I thought of a man whose attentions defined the pathology of my romantic relationships for 23 years. I understood the lyrics “When you were mine/You were kinda, sorta my best friend/so I was blind” in the way of a woman-child who is learning all the wrong lessons about love and relationships. I mourned my first college love to Sinead O’Connor’s version of Nothing Compares to You and I chain-smoked and listened to I Could Never Take the Place of Your Man at least a thousand times when I was 22 and my first adult relationship ended. There are so many memories that are set to that strange, wonderful genius’ music, but nothing so poignant as the years of 1982 to 1984 when he released 1999 and Purple Rain, two albums that served as the backdrop to that terrible, glorious time.
I was 13 in the summer of 1984. I remember the year as being one marked by monumental moments that came one after another. Recollecting the pain of that time has been softened by the 32 years that have passed. Time and a hundreds of hours of therapy have created scars where there were once open wounds but sometimes a trigger sets off a cascade of memories. The vignettes are part of the cascade that has resulted from the memories and the music.


Let’s Go Crazy “Pills and thrills and daffodils will kill, Hang tough children.”
My father was entrenched in a battle with his own mind in 1984. Some days, life in our household was like those Christmas Eves during the The Great War when all sides agreed on armistice to catch their breath. Other days the cease fire was suspended and there was yelling and broken dishes and tears. The worst part was that madness like my father’s was, by definition, not predictable. He could be a charismatic, charming genius who improvised folksy riffs on his guitar for hours, carved beautiful birds, and invented strange time-saving machines. He once designed and produced a machine that plucked ducks by attaching a smooth cylinder with rubber nubs to a spinning motor. The cylinder spun and the rubber nubs pulled the feathers off the duck carcass. It was hilarious to watch him in his hip-boots and red hunting vest with duck feathers and down floating around him like snow, catching in his beard and the waving flames of his burnished copper hair. Those were the moments when my father’s insanity was driven and the man himself was incandescent and irresistible.


Computer Blue “Someone please please tell me what the hell is wrong”
There were other times though, another part of my father that my mother once told me he called his dark child. The dark child had good days and bad days, on good days the dark child would hang in front of our open screen door like a specter in a Japanese fairy tale, staring blank-eyed at passing traffic and sucking on the corner of his mustache. The bad days were terrifying, the dark child would throw pots and pans, grasp at whatever personal issue my mother or I were dealing with and exploit it to prove to both of us we were poisonous failures, or just curl up on the scrappy front lawn of our small duplex and scream I can’t take it anymore.


Baby I’m a Star “My lucks gonna change tonight, there’s gotta be a better life.”
Escaping my house and my father’s mercurial, dangerous mood swings was paramount to survival.  The most freeing of my indulgences was roller skating. Every Friday night my father or mother would drive my friends and I to Skateland. I remember it as a palace of a roller skating rink on the outskirts of town. I wrote a poem about that place. What kind of writer would I be if I didn’t take gross advantage of a common place with a miraculous, fantastical name? I can still smell the industrial cleaner and feel of the bubbled, uneven patch of floor that rumbled beneath my skates when I was unfortunate enough to take that stupid corner too wide.


Little Red Corvette “See you’re the kinda person, that believes in makin’ out once, Love ’em and leave ’em fast.”

I was an insecure, depressed kid with long brown hair, feathered bangs, and no boobs. I was obsessed with Esprit sweaters and lilac leg warmers.  One way that I tried to resolve the massive dissonance in my life was bumbling around a polished wood floor with 10 lbs of rented wheels and leather tied to my feet. I also kissed a lot of boys I didn’t know in dark corners.  There was one boy. I remember he was lanky and skittish like a new colt, all elbows and knees and so clumsy that he didn’t even rent skates. I don’t remember his name, but I remember his sneakers.  He wore Adidas white with the royal blue stripes and I thought he was insane. Who wouldn’t want to glide around in a circle, crisscrossing your feet like Olivia Newton-John on the corners and switching to backwards on the straightaways like a peacock fanning its feathers. I thought that skating was the closest thing to flying a person could experience while tied to the ground. I told all-elbows this and he looked at me like I had grown an extra head. Then he kissed me. It was unskilled and full of awkward stops for breath and bumped noses. It was so innocent. He didn’t open his mouth or do anything other than grasp at my waist like he was drowning. I leaned against the carpeted wall and tried to imagine he was Harrison Ford. When the lights came up and he blushed and handed me his comb before he walked away.

RIP Prince. Thank you.

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