A Conversation About Big Stuff, aka Lots of Swearing

Misty Lyn and I have been in overlapping-but-not-quite-totally-the-same circles for the last decade plus. I think I first met her waaay back in the Elbow Room/Dabenport days.

We have a ton of shared friends, and in like 2008/9, when I was involved in helping organize some fundraiser shows and stuff for one of my fave orgs, 826michigan, we crossed paths here and there again, too. And then, of course, at Old Town.

It just kinda kept happening, and I’ve glad our orbits have overlapped a little more in the last few of years. It’s been fun to see what she’s up to, what she cares about, and what she channels her energy towards — in these last few years, that’s been photography and documenting the River Street Anthology in particular.

She’s turned those photo and capturing skills to her own project this year too, in the 52 Portraits Project — a series of portraits accompanied by extended interviews with various women, set up in podcast format.

It certainly feels humbling that she wanted to spend time chatting with me. I hope I had at least a little insight on navigating difficult times, or at least that listening to this makes you laugh a little bit.

And lordy, I had NO idea that I swore so much when talking about intense things, but I guess that’s just what I do now (so NSFW, yo!). Special audio appearance by Sparky, oops!

Here’s to stories, to reflecting on the long haul, sharing them, to learning and trying to connect to each other through them – in whatever form they may take.

Thank you, Misty, for all that you’re doing, and for taking the time to chat. ❤

 

 

You Are Here: Spring to Spring Side B

You Are Here: Spring to Spring Side B

I wrote this in mid April, right after Side A, and was waiting for some space to go back and take a second look/edit.

Got caught up in a celebration of spring and friends and my birthday (which felt wonderful, fun, life-affirming) and then in quick succession, the death of a friend from cancer (which felt sad, gutting, terrifying, complicated).

But it’s time to flip things over to Side B… even if it’s a little later than I’d figured…

February 2017

You are here, this is one of the first shows you’ve been through since treatment ended six months ago. It’s harder to navigate shows with lots of standing. Walking is no problem, but your legs start to burn if you’re standing for over 20 minutes. The nerve damage from the chemo is still a daily frustration. It’s getting better slowly, though, certainly in your hands you can notice improvement. You can button buttons better again.

You’ve been back to a full-time work schedule for a month, though that’s more out of economic necessity than really feeling like you have the the energy to do it. All of the rehab and PT and working out and walk-a-lot-each-day-but-not-too-much takes a lot of other energy.

You joke with your doctor that you are the first person to use a Fitbit in order not to walk too many steps. You tend to get excited when you have energy and lose track and why not walk to work AND walk home? And then a few hours later your legs are on fire at 3am.

You’re doing all the things you’re supposed to do, and frankly you’re kind of tired of doing so much and feeling so stuck, exhausted, and still looking like a downy baby bird with no eyebrows.

But still, you are trying so hard to make room for joy. To save some energy for the people and things you love, and the reasons you’re excited to be coming out of this weird treatment cocoon.

There is this band you’ve loved since you were like 18. You were obsessed, when obsessed meant more than just heading to YouTube, when it meant finding some way to get some record or even a friend handing you a VHS tape. They’re going to play and you’ve never seen them live so goddammit you ARE going to be there.

You know it will be packed so you go early. You wear sneakers (ugh!) so you can stand longer. Your friend Greg is there and thank goodness he and your husband can hang out in a decent spot, because every 20 minutes you have to go sit down on a table of very expensive t-shirts. But still, you do it!

And The Mummies finally play and are great and fun and messy and it feels so good to be there in this place. You see people you’ve known since forever, and people you’re just getting to know. You make jokes but also still feel incredibly awkward, like a foal who can’t get its legs under it.

 

March 2017

You are getting your legs under you. Through a friend’s incredible graciousness, you get to see Patti Smith (you get to sit for that one). You get to see PJ Harvey.

 

You know you are getting stronger. You can walk farther, but you are still taking a LOT of medicine for pain. Your monthly supply of pain medicine is a full two of these bottles — wide as a can of pop, but taller — pint glass for size.

 

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May 2017

You are here. Your birthday! So many lovely friends celebrate, and you look around at the greenery slowly revealing itself and the life people have bought and brought you, and you think “abundance” and sigh and feel grateful.

You keep trying, and doing, you keep working.

 

April 2018

You are here and you are standing.

You are in this same place you were in just a little over a year ago. There are so many people, all crowded in. You think about the amount of medicine you were still taking a year ago just to be able to stand for 20 minutes at a time, and how now it’s less than a quarter of that.

You are here, but you have gone away on a trip and come back changed. Like some bizarre time travel Einstein shit — everyone but you has been experiencing time in a different way — all while you’ve trekked across the galaxy. It took you one year, but them 20. Or is it the other way around?

To everyone else, you were standing still — slower, even — resting, but there were so many things that shifted — things you’d thought were givens.

You move with your friend and your partner towards the stage, the band is starting. Your partner disappears into the crowd completely. No trace. That used to be your move. So many things have changed, roles flipped, patterns shifted, with new things to figure out.

You stand at the back of the crowd, you spot some folks you love but mostly you just focus on how your body feels the sound. You feel warm and thankful and alive. You don’t need to keep finding places to rest as much anymore.

Here you are, standing on your own two feet.

 


 

 

 

 

You Are Here: Spring to Spring, Side A

You Are Here: Spring to Spring, Side A

march 2015

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ufo factory bathroom

You are here. Your friends are too.
Well, like outside the door. Not IN the bathroom with you.
You are uncomfortable with selfies, but comfortable here.
The walls are pink. You shift your stance in the light. You snap a picture.

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b-room, driver’s side/backseat studio

You are here. Your feet cross the threshold of a beat-up room you’ve been in before.

You play and record songs with two of the closest people in your life.

Jo is the very best at snacks. You’d considered naming your band Snacks at one point.

You all want to capture this moment in time, and Jo is going to have a second kid. You know things are going to change a lot.

You have no idea how giant that statement really is.

april 2015

dreamland theater, ypsi

You are here. You’re with these same bandmates, playing at a fest you’ve played every year since you started this band/playing bass — including playing right after you graduated school. Even that one year your guitarist had to go take a breastfeeding break in the car. These babes are some the most solid, most make-it-work women that you know. You are loyal.

As you’re starting off, some idiot tosses a beer can and an insult.

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You plant your feet, square your hips, throw that beer can right back and holler right back at him. This boy’s dumb anger is not yours to carry.

You launch into a set that might well be your last as a band, though none you know it yet. You’re having a long-planned surgery in a month, and life’s taking some twists for everyone, as life does.

september 2015

a farm, your house, the doctor’s office

You are here. Look, you’ve recovered from surgery!

You dance, hopping up and down, you celebrate, you stroll out to the fire, warming your feet by it — fancy shoes aren’t really made for the slight chill of a September night in the country.

You find a tiny bump in the shower, so you visit the doctor (he has braces. it’s disconcerting)

He tells you not to worry.
You worry.
You are right to worry.

april 2016

your backyard

You are here, somewhat to your own surprise.

You are so, so tired, but finishing the second part of a three-part, nine-month marathon. You are mostly napping. Wanting nobody to need anything from you. You do not want to be needed. You need yourself and you need other people but they cannot need you, it takes too much.

You go to the hospital every day. You are so. damn. sick. of the hospital. But grateful it can help you. But also, did I mention tired?

Most days when fatigue hits, it’s heavy as a surging wave in the ocean. Suddenly, you need to lay down. You think of those weighted blankets, and imagine someone just running around throwing them on people. That is how it would look. Instant crumpling.

There is no choice, no coaxing the body with caffeine or breath or movement.

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You are here. You are a shadow, in more ways than one. Your silhouette is different, because, wig. You’re wearing a hat because of the suddenly bright sun and hypersensitivity to light. It kind of makes you look like a shootout villain at high noon in a western.

You lay in a hammock under a blanket, in true Michigan style. The crocuses reach upward, and hyacinths pop.

You are here.

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I keep thinking/I keep sleeping/I keep on

I keep thinking/I keep sleeping/I keep on

I keep thinking about water. I keep thinking about hair. I keep thinking about relationships and circumstance and dumb luck. I think about eyebrows and how I never really learned a damn thing about makeup and cultures of girlhood and initiation to womanhood. I keep thinking about gender and race and class and access and healthcare and networks and communication. And grace outside of religion, and reciprocity and abundance and how it takes so many different forms.

And then my brain fizzles and sputters and I have no choice but to sleep or do something very, very slow — very, very different from what my brain usually craves.

I have so, SO much that I start thinking about — that I make rough notes about and sketch out in fits and starts here and there, but synthesis? Synthesis is hard right now.

The doctors had tried not to scare me or “prime” me to experience certain side effects, but the heavy fatigue that started to set in after AC chemo treatment #2 was like nothing I’ve ever experienced. They reassure/d me that it was/is “not at all unexpected,” much like the (much more minor) chemo-brain that had crept in since the very first session.

They even reassured me that the depth and heaviness of this tiredness was something that oftentimes doctors — going through their own cancer treatment — did not fully understand until they themselves experienced it. It’s odd when even sleep does not feel restorative. But luckily, there are still moments and even an hour here or there where I feel more like myself, energy-wise. Most days, I still try to walk at least a few miles and/or do gentle yoga at home, because even if I feel crappy at the beginning, at least those things help make me feel a little more fully a part of my body and less like a tired blob. I’m also ALL OVER some basic nutritional things I can do, and acupuncture helps a bit.

A few years ago, in my first year of grad school, I had a car accident that left me with a minor concussion. I remember suddenly realizing I was standing in the middle of the highway, with broken glass all around me, and the ding-ding-ding of the door-ajar alarm tinnily ringing in the background, my tiny car smashed, but having done its protective job amazingly (I’ll probably always buy Subarus now).

I was lucky to be alive, and to be, in the big scheme of things, relatively OK. But the concussion did take a few months to fully heal, and it was scary to have just jumped back in to the massive amount of reading, analyzing, and writing that grad school entails, only to have my brain and ability to focus jostled. I was fortunate enough to have insurance, good doctors, and two instructors in particular who understood that I might need a little extra time and assistance on papers, and I got through.

In fact, once I was on the other side of healing, I used what I learned on the process of “sensory gating” (I became temporarily less able to block out light and sound — sometimes I would wake up suddenly in my bed in the middle of the night, with the hum of the far away highway or hospital SO loud in my ears) to write one of my favorite papers about information overload. I think about that cycle these days, and how in the midst of healing, things felt really hard, but how ultimately, my body did, indeed heal.

Man, was I really, really lucky that I healed well then. Man, am I lucky now to be able to even go through this treatment — to have an illness that has a good research base and treatments that most often have really good end-results.

But in those moments of trying to adjust to a brain or a body working differently or needing far more rest, it’s still a challenge. Not every moment, and not even every day, but it’s a strange identity shift when you’re not able to do or be the things you’ve usually been able to. Especially when, like me, you’ve kinda prided yourself for a long, long time on being someone who gets thing done and makes things happen.

As the AC chemo gets out of my system little by little, my energy will come back a bit. I just did my first Taxol infusion yesterday, and so far, it seems way less mean. I even went to work for 3 1/2 days last week (not much, but the most I’ve been able to do so far without every email turning into a mess of typos – ha!). Then, promptly caught a cold and had to sequester myself again — ha!

BUT, my energy is getting better, little bits at a time. I look forward to having the energy to put my thoughts together more coherently – whether in conversation, work, little songs (SO many lazy little voice recordings to go through) or simply writing things down.

For now, my writing still feels very disjointed to me – whether in notes to friends or here, but I want to keep at it. I want to have this both as a way to check-in and a way to reflect. Also, as a way for people to know that everyone struggles with things, and it’s so very, very human — whether we/you are comfortable talking about it (and there are often very good reasons not to) or not. This being human thing can be wonderful, joyful and amazing, and it can also be really hard. That’s OK. That’s all a part of it. That’s how we learn and can try to understand each other, if we’re lucky.

In the near future:
More about why I’m writing, about water, about all of the gender stuff you just can’t avoid thinking about in the midst of breast cancer treatment, and also, on radio, art and grace…

Until then:
My super-talented partner in crime (go see the originals for his amazing Stooges comic and other work at GIG: through 1/30 at the Art Center (review) if you get a chance to stop in!) has been pretty amazing in the way he’s risen to the challenge of things. I’m super, super lucky.

He made a really honest and wonderfully put-together comic, here (click thru on it to go beyond the lil’ preview image)…

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