Multiple sclerosis, Struggles, Uncategorized

Mixing memory and desire

Music has always been a vital part of my life, probably since the womb.

I have my parents to thank for that. They encouraged me to pursue the arts, dance and (musical) theater in particular. I almost had a close call with playing the flute in band, but terrified sixth grade me backed out at the (literal) last minute.

When I was younger, my favorite moments with my dad were our morning car rides. He’d have the radio tuned to a classic rock station. I remember the metronome was his hand tap-tap-tapping the steering wheel, his wedding band making a distinctive metallic thump with every beat.

My mom had the most extensive album collection I’ve ever seen outside of a record store. I had Prince and Cyndi Lauper in kindergarten, alongside my Archie album and Annie cast recording. (Tipper would have probably tsk tsked her for allowing such a scandalous thing happen, but I think I turned out OK).

Gimme a beat!

She also took me to musicals whenever the touring company came our way, and when I got into modern dance, she got into modern music. The stranger, the better.

My ears have been quite spoiled over the years. I still am in love with music. The more, the better.

Nick and I went to the Austin City Limits music festival a few years ago. And every year since then, I’ve seen festivals grow and grow and grow. And every year, I make it my mission to get to one.

I never do, of course. A festival trip becomes really cost prohibitive really quick, and we tend to not like crowds.

But today the Bonnaroo festival lineup came out. And piqued my interest in musical festivals yet again.

I really want to go to this one. Like I’d donate a kidney to attend this thing.  The lineup is sick. I’m talking Arcade Fire, Neil Young, MMJ, The Decemberists, Mavis Staples, Loretta Lynn, Cold War Kids, The Walkman, Devotchka, Jessica Lea Mayfield, The Black Keys.

Ahhhhhhhhhhhhh. Heaven for a musicphile.

Like a patient on a table (love this nod to “Love Song of Alfred J. Prufrock”)
I wanna walk again gonna move through the pain

Now our lives are changing fast
Hope that something pure can last

We used to wait
Sometimes it never came
Still moving through the pain

— Arcade Fire, “We Used to Wait”

I’d like to throw caution to the wind and just go, but it’s becoming increasingly harder to put anything in stone anymore, especially that far out. Plans tend to go awry in my world pretty quickly.

And then there’s the physicality of it all — walking to and from multiple tents strewn across a 700-acre Tennessee farm on the sultry days of early summer in the South. I don’t know that my body can take it.

But I don’t want my world to get increasingly smaller as I give in to the fears of MS. If every decision I make is based on this disease/my future with MS, then I’ve limited myself to just a fraction of what’s out there.

Life, like music, is about taking risks and finding that lyric, or that song, or that moment, and embracing it with everything that’s in you.

And I want that experience, consequences be damned.



5 thoughts on “Mixing memory and desire”

  1. How cute is that picture?
    You know, I know you probably don’t want to do this, but maybe going to the festival and bringing a wheelchair to use during some of it would be something to consider.

  2. So with you on the need for music to help us through (Hello, Mr. Springsteen …) Great post, and I love your parting shot: “And I want that experience, consequences be damned.” Amen to that, Jenn. Dan

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