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. ❤

 

 

Advertisements

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.

View this post on Instagram

loved it at 17 yrs old/love it now. grateful ❤️

A post shared by mariah (@mariahbbc) on

 

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.

 

IMG_0239

 

 

 

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.

View this post on Instagram

🎉plant party! 🌱

A post shared by mariah (@mariahbbc) on

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

924129_1572290719706877_381092558_n

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.

10979494_1556146227997601_377143178_n

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.

Screen Shot 2018-04-25 at 8.42.56 PM

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.

12677387_813117695485543_52810387_n

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.

13092348_1130023940383745_438860445_n

Cycles/Seasons/October

It’s been a weird few years. It’s been a weird few weeks. Still processing a lot of junk, so it’s good I don’t have to have a Hot Take on anything, ha.

Reflecting on cycles and patterns and constants and changes and seasons.

So thankful to be here. There is so much to be thankful for ❤

October 2014 (not easy but the calm before the storm)

View this post on Instagram

magic in the minimall parking lot

A post shared by mariah (@mariahbbc) on

View this post on Instagram

best bud #muppetdog

A post shared by mariah (@mariahbbc) on

View this post on Instagram

finally stopping in!

A post shared by mariah (@mariahbbc) on

View this post on Instagram

white witch #ootd

A post shared by mariah (@mariahbbc) on

October 2015 (fuck, fuck, fuck, fuck, fuck)

View this post on Instagram

Portrait of me & Phoebe💖, plus the Worm Family

A post shared by mariah (@mariahbbc) on

View this post on Instagram

🍏twins 2/2 👯 @ the #zineshow

A post shared by mariah (@mariahbbc) on

October 2016 (so tired, slowly emerging from a cocoon) 

View this post on Instagram

#latergram #hippiemodernism

A post shared by mariah (@mariahbbc) on

View this post on Instagram

primary

A post shared by mariah (@mariahbbc) on

View this post on Instagram

always great pickups at a farm sale

A post shared by mariah (@mariahbbc) on

View this post on Instagram

seeing buddies w buddies #lovedatbear

A post shared by mariah (@mariahbbc) on

October 2017 (ok, ok, here we go, slowly whew.)

View this post on Instagram

after the party

A post shared by mariah (@mariahbbc) on

View this post on Instagram

good weekend/thankful ✨

A post shared by mariah (@mariahbbc) on

View this post on Instagram

monday

A post shared by mariah (@mariahbbc) on

View this post on Instagram

I bought these boots 2 years ago, then promptly had to pack them away. my feet and legs got too jacked up from chemo for me to wear anything other than sneakers for a long long time. I’ve been healing, though. *** I took them out of the closet last month and this last weekend was the first time I was actually able to *wear* them. *** Yesterday, after a nervous morning, I had a clear mammogram. ‼️🤞Fingers crossed, in a few weeks I’ll get to celebrate 2 YEARS cancer-free. (really significant wrt my initial diagnosis) *** So thankful for these feet, to be able to stand and walk and dance almost like normal again. So thankful for my loved ones, J, #sparkycoupon and the rest of my extended friend-family. So thankful for sweet friends and acquaintances. *** Most of all, thankful for a second chance. Thanks for taking good care of me, friends. ✨❤️💪

A post shared by mariah (@mariahbbc) on

View this post on Instagram

goodbye Kiwanis, you’ve always been there for me 💖

A post shared by mariah (@mariahbbc) on

View this post on Instagram

explorers

A post shared by mariah (@mariahbbc) on

 

 

Young Adult

Hey. It’s been awhile.

It’s not for lack of thoughts, feelings, or things happening, but the first year post-treatment involves a lot of being tired, a lot of hard work healing, a lot of change, and a lot of just figuring out how to deal with certain things.

Honestly? I just didn’t want to be writing too much about pain. That’s just a bummer.

But really, what else is it that we all ever truly write about? Or make things about?

Sure, there are plenty of other things in particular, but when it comes down to it, it’s one of the main things we’re always talking, singing, writing, making things about — just sometimes more directly than others: our pain, where it came from, our path to mold it into something different — to shape ourselves into something different, transforming pain and our hurt selves into other things — things we hope are great and better, but may still feel a little busted at times.

****

There is more and more joy and fun and feeling like I recognize parts of my life. I try to guard the energy I need to seek all that good stuff out, and to nurture it in quiet ways on the days when I can’t quite rally my past-life rambunctiousness. Some days, it just sneaks right in.

But as I keep healing more and more, moving into feeling better and better, I still feel awkward, and not always on solid footing.

****

There is a thing called proprioception, and it’s a sort of sense of yourself within space — a sense of where your body or legs or hands or fingers are. It helps you figure out how to move, adjust, and your next movement.

Proprioception refers to the body’s ability to sense movement within joints and joint position. This ability enables us to know where our limbs are in space without having to look.

The neuropathy I had from chemo led to some damage to this sense, and I’ve been having to recover it, little by little. The amazing thing is, it does recover. I can better judge where my fingers are on a fingerboard/frets now. I am not so clumsy, dropping things or tripping anymore.

And the whole thing, while really literal, feels pretty metaphorical some days too.

****

After getting my diagnosis, I try to find a local support group.

I find out that the medical/support community officially defines a “Young Adult” patient as “ages 15-39.” OK, I think, whew, I fall in that range. I look into the local young adult support group. Their upper cutoff is age 30.

So, I’m too young for the regular support groups, barely too old for the local “young adult” group. Even with support groups, there’s no place to fit.

****

I hand over the clipboard, the nurse or assistant glances down at the form, pauses, and raises an eyebrow.

“Cancer? But you’re so young.

A version of this story has happened to me at least a dozen times over these last two years. Pretty awkward trying to figure out how to reply — often the nurse or assistant seems visibly rattled, like they are hoping I just checked the wrong box.

After a few super awkward exchanges, I just started responding, “I know, right?!?”

What the hell else can you say?

I’d like to appeal the fact of it too.

****

After finishing radiation last summer, I went to a retreat. I fell asleep listening to out-in-the-country sounds that lulled me to sleep when I was little. It made me feel ten years old again, at peace, and myself, even if I still didn’t totally recognize the person in the mirror.

Nerve damage from chemo was at its worst then — as I creaked from my cot to the meeting tent, my legs wobbled like a new and gangly colt.

I methodically made my way around the pond and tumbled into a folding chair next to a 50s-ish woman.

“I’m sorry, I don’t mean to be rude, but how old are you?”

“Um…”

“…because you look so YOUNG. You can’t be more than what, 25?”

“Thanks, ha. Actually, add like a decade.”

I’m guessing that lady was seriously lowballing it to be polite, but daaang.

I mean THANKS to everyone who told me how much it sucked to be “diagnosed in my 20s” for thinking I was LIKE A DECADE YOUNGER than I am. Ha.

****

In a lot of ways, my body looks the same as it did 2 years ago, besides my port scar, and a small slash on my left breast. I tell myself that it just looks like I got into a rowdy knife fight.

But everything feels so different. I’ve never had curly hair before. I ask all my curly-haired friends just how to take care of this different part of me now. Condition, don’t wash. Use this towel, that product. Air dry. No wait, use this special thing. It feels like sitting in my friend Melanie’s bathroom in 7th grade, trying to figure out eyeliner.

My hair is different, sleep is different, my dreams are different, my focus is different, my eyes are different, my balance is different, my immune system is different, my hormones — they go on pause if you go through chemo — they are back and totally healthy (pretty rad! that’s not guaranteed), but… they’re different too.

Since they’re still leveling out, they’re a bit in flux.

I’ll notice myself having some teenage feelings — angst, sadness, crushes, sudden elation, moodiness — from time to time and I have to stop and think, “Ohhhh, wait. This is like a second puberty, a new adolescence. That’s what’s up.” It makes feeling awkward make a lot more sense.

****

I still have tons of follow-up appointments, and almost everyone else at the Cancer Center is at least 25-30 years older than me. When they aren’t, they are the family, not the patient.

The pictures on the pamphlets and medical literature show people who look more like my mom’s friends.

There are only a few visits over two years when I spot someone close to my age. In two cases, seeing the other younger women just makes me feel so, so sad. We muster weak smiles to each other and can’t quite bring ourselves to talk about why we’re there.

In the third case, the woman seems about my age. We’re alone in the waiting room together, and we talk. Turns out she’s younger than me. But I’m a selfish jerk for silently, internally hoping that the fact she’s having a recurrence isn’t something we’ll share. I leave with an all-clear on my own test, feeling both grateful/relieved, guilty and even sadder than before.

 

****

Some days, I feel older than my chronological age. It’s a jarring adjustment for someone who likes to throw her full heart and energy into whatever she does. I like to feel wild. I want to feel full-color.

But I’m getting back to being able to walk 8-10k steps a day, which feels really, really good. All the weights and PT and work have had a pretty dramatic impact. I feel stronger. I feel younger than I did 3 months ago, and that was more energetic than I was 3 months before that. It’s incremental, and I am so proud of/thankful for the body’s astonishing ability to heal.

****

When I first started my job at the library, I was working an event — a panel where a handful of authors were discussing their work. It didn’t take too long to get to the tricky question — what exactly does “Young Adult” mean in literature?

I went back to the transcript of that event to try to suss out what I remembered connecting with. I found this:

“Young adult is not a genre at all. It is a perspective. The quality of the literature is no less. The complexity of the plot is no less. The seriousness of the issues is no less. The difference is that it is all about that time– it’s coming from a person who is going through a very specific change in their brain chemistry and also experiencing things, very significant things, for the first time.

they’re going through something for the first time. I think that’s what it is, is coming of age…when you’re that age, everything’s new, and you’re going through so many different things for the first time.”

There it is.

These last two years have definitely had a lot of first-times.

I’d love for so many of those firsts to also be lasts, but for now, I’m just focusing on how thankful I am to have brand new firsts, to be getting back to living as part of the world.

My feet still feel new some days, my footing tentative, awkward, but I’m standing, walking better — understanding where my body is within space, and where it’s moving to.

****

Last week I got an all-clear on my mammogram. SUCH good news. This means — fingers crossed — I’ll celebrate 2 years with NED (no evidence of disease — measured from surgery date, rather than treatment completion) in November!

For the subtype of cancer I had, this is super significant, as there’s a higher chance of recurrence in the first 3 years. I’m 2/3 of the way through that window. I feel about 2/3 back to feeling like myself, too.

****

In March, a friend’s generosity meant I got to see Patti Smith play all of Horses. It was electric. Had me in awe of just how much power she had over an audience, a room, and a feeling. So alive.

Toward the end of the set, she and the band played My Generation, and she was spitting, singing with alternating control and abandon. And when the line came around to “hope I die before I get old,” she replied, “You know what?! I AM old. And I’m gonna get FUCKING OLDER”

And I thought, yes. Yes, exactly. By some standards, I’m young, by others I’m old. Some days I feel brand new, some days I feel 80. But in either case. I’m gonna get fucking older.

At least that’s what I’m trying for.

Let’s try.

 

 

I like to think that I started out as the first (YMG) song here, and am getting closer to the later (Modern Lovers) one. 

 

Lashes, Haircuts, Time and Healing…

Lashes, Haircuts, Time and Healing…

My eyelashes are falling out again. My doctor said that that was pretty normal in the year after completing treatment — that she knew one woman whose lashes had fallen out and grown back again FIVE(!) times in the following year. When my eyes get all irritated a few times a day, it’s just a “hey, stop and reflect for a moment” reminder.

Some days it is reassuring and feels triumphant to think about where I was a year ago. Most days I feel thankful, but it’s an exhausted-kind-of-thankful. An “oh my god, I just ran a marathon and you’re telling me I have to keep walking?!” kind. I absolutely adore my job and everyone I work with and all of my friends and all of that, but there’s a part of me that just wishes I could go live on a beach for about a month, and then come back, feeling more ready for the rest of the world and life and weird times that will require energy, resistance, defiant joy and transformative love each day.

How do people do this — come back from the strange semi-there world of cancer and treatment and recovery — if they don’t adore their job, their life, the world and people all around them? It’s hard enough when so many of those factors are so right that you feel like you’ve won the work/friend/community lottery.

Some days the sadness and anger bubbles alongside that thankfulness. One of my guiding reassurances since my teen years has been that thankfulness crowds out a lot of unpleasant emotions. That’s true, but it only seems realistic to recognize that those other things also have a right to exist, to be felt, to be processed over time, to be channeled (oh, oh, I am SO practiced at channeling feelings), and perhaps, eventually to be let go.

That is part of the fundamental work of healing, but for me — someone who has always taken a long time to process things but a short time to check most things off a to-do list, — it’s disconcerting to realize that that healing has a longer timeframe than I had initially thought or that I would wish it would.

Synthesis is still more challenging than it used to be. Energy/fatigue is still a challenge. It takes me at least three times as long to do most things as I think it will. I know it will continue to get better. When I look back, I can see it getting better, but it’s hard to let go of the fantasy that life after treatment bounces back quickly to what used to feel comfortable and normal. I imagined a different timeframe. I needed to believe in a different timeframe in order to meet treatment with the attitude I wanted to have. My stubbornness/tenacity can be both a gift and an additional source of frustration.

I am changed in ways I did not want to be changed. Besides the big things, the scars and the way my body cracks and pops eighteen times when I get up or sit down, my skin is different now. My immune system still has some healing to do too. I can’t usually sleep on my left side without this weird-and-kinda-annoying-but-nonetheless-helpful pillow thing. But U of M has pretty amazing resources, doctors, and occupational/physical therapy folks with an amazing breadth of knowledge to help folks with quality of life issues after treatment. And for that, dang am I thankful.

My neuropathy in my legs continues to heal, slowly but surely, and I’ve gotten help for some other post-treatment issues/challenges. Through the LiveStrong program at the local Y, I can really see advances in my strength, which is heartening — especially on the days I feel frustrated. And most days, walking down steps does not hurt at all anymore, which is a huge positive too. I can walk to or from work a day or two a week, and my doc says that my daily step amount is remarkable considering the amount of neuropathy I started out with. That’s reassuring, but also just makes me laugh at myself, because I know that part of that is just that I am tenacious (stubborn!), and like clearly measurable goals.

The hair on my head is proving sturdier than my eyelashes, and is wonderfully curly and getting healthier and softer. It’s odd that it’s so dark, but I dig the Rogue/skunk stripe at the front. I just had my second haircut, which doesn’t even seem real.

View this post on Instagram

haircut buddy

A post shared by mariah (@mariahbbc) on

 

Time is still moving strangely, but slightly less so with each week. Instead of barely making it through a few hours of Tiny Expo post-chemo-sesh, this year I was actually able to be more involved again in the planning and execution, and I saw and hugged and helped and chatted with so many friends. Jeremy even unveiled a few new prints, and my pride in his accomplishment and refocusing make my heart swell.

The biggest thing I notice in these last few months? It’s been slow (like me!) and gradual… My own life has less moments of feeling foreign to me, which is, I think, a lot of what I’m learning real healing is about.