For the past two years, Alison Piepmeier has been one of the City Paper's main columnists. Over the course of that time, Alison, a proud single mother to a child with Down syndrome, has brought a feisty, feminist spirit to the Views pages, one that all of us here have appreciated and I hope you have too. This past year has been a particularly stellar one for Alison, as she broke stories on the General Assembly's anti-LGBT goose-steppery and led the Fun Home fight at her employer, the College of Charleston. As fans — perhaps even hate-crushers — you've probably wondered why Alison's byline hasn't appeared in the paper recently. This story, a collection of posts from Alison's blog and previously unpublished material, explains why. —Chris Haire
I haven't been blogging for a while. Now I'm ready to tell you the story. Just so you're prepared, the story ends with "in two weeks I'm having brain surgery."
Or maybe that's how the story should begin.
In two weeks I'm having brain surgery. On Christmas Eve four and a half years ago, I had a huge seizure, and in the hospital that night, my brain tumor was discovered. Six weeks later, a wonderful neurosurgeon at Duke removed a solid chunk of material from the middle of the part of my brain that controls language. The surgery was a great success. It stopped the remaining parts of the tumor from growing. And when the tumor started to grow a bit two years later, I went on a pretty easygoing chemotherapy, and that stopped it again.
The surgery also had small effects on my language and my memory. Within a couple of months of the surgery, I was in the car with Walter [my ex-husband], talking about something, and I discovered a spot where a word was supposed to be, but it wasn't there.
"Dammit!" I said. "It's a word. It means big, exaggerated, over the top!"
"I can't think of it!"
He then said, "It starts with 'hy.'"
"Hyperbole!" I announced, both relieved and disappointed. I'd thought of the word, but I'd needed clues.
When I told people this story immediately after it happened, almost everyone tried to encourage me by telling me that they didn't know that word to begin with! Hell, nobody knows the word hyperbole!
But I knew it. And the fact that it had disappeared was an effect of the surgery. It's not a big thing — I'm able to teach easily, to write, to maintain conversations. I've published academic articles and a ton of columns for the City Paper. But I often have to start stories by saying, "I've probably already told you this, but..." I often have to change my sentence halfway through when I realize that I'm approaching a word that isn't going to come to me. I have to write things down the moment I think of them or they'll disappear. I forget names.
I get that everyone 35 and up reading this will tell me that they're experiencing this very thing. And I hear this — and see it — from enough of my middle-aged friends to know it's true. It's easy for me to blame everything on the tumor.
- Jonathan Boncek
- Alison and her six-year-old daughter Maybelle days before surgery
Since Dec. 25, 2009, I've thought about the tumor many times a day. I blame things on it in part because I never forget about it. Sometimes I'm aware of it simply as part of my body, while other times I fear that it'll grow and that I'll die.
Now it's growing. I've made my uncle who's a neurosurgeon assure me more than once that this growth doesn't mean I'm going to die soon. What it means is that I'm going to have surgery. My Duke neurosurgeon is going to explore the remaining tumor that has infiltrated my brain tissue. When he takes out the tumor, he'll also be taking out parts of my brain. And as I mentioned, the tumor is in the language center of my brain.
My No. 1 priority, which I can recognize with no ambivalence, is being alive for Maybelle.
If I allow the neurosurgeon to take out more of the tumor, I'll live longer, but I'll lose my language ability, an ability that in many ways defines who I am. How do I choose? I ask myself this question, and he said, "You don't choose. You'll get both — language and being alive." I heard what he said, and I wrote it down.
My No. 1 priority, which I can recognize with no ambivalence, is being alive for Maybelle. But language — talking, writing, thinking, being outraged, being passionate, being curious, being able to connect with the people I love — is a significant second priority. So important that it's a millimeter below priority No. 1.
I hope that I don't have to choose. I hope that the surgery will help me to have years and years and years of life. And I hope that within weeks or months of the surgery, possibly with speech therapy and coaching, I'm back to being a person in love with language and able to use it. If it's a few notches lower, I can accept that.
But how many notches? What will that be like? How can I choose?
I am now six days away from heading to Duke. My mom will be arriving at noon on Aug. 13, and then she and I will hop in the car and head out of town.
On Monday, I went to Duke and talked with my neurosurgeon and my oncologist. Both were actually quite encouraging about priority No. 2, my language. They said that I'll forget people's names, even if I've met them multiple times. The radiation that'll happen after the surgery will mess with my short-term memory, and that won't go away. But both said that this is about it. My language won't drop to the level of a fifth grader.
I was really relieved about that news. I'll still be able to speak, to interact, even to write. I may have to apologize and explain why I've forgotten what someone just said, but I'll figure out a strategy to make that work.
Having priority No. 2 addressed didn't eradicate priority No. 1, though: being alive for Maybelle. Of course, no one could explain that one completely. It's a mystery.
But I got some frightening answers. My neurologist doesn't seem to have good interpersonal skills, because he suggested that the remaining years in my life would be far too abbreviated. After that I met with my oncologist and her nurse practitioner, and they were much more encouraging. The nurse practitioner seemed to be an expert about coaching, telling me all the things that contradicted my neurosurgeon: "You're young! Technology is changing every day! We're basing our predictions on old data!" My oncologist and her team are the ones dealing with all the post-surgery stuff, so they have hopeful thoughts.
Those thoughts include radiation. New, more aggressive chemo. An even more aggressive kind after that, if need be. All kinds of options. No need to panic yet. As if I can simply turn off the panic.
There's so little I have control over, of course. I'm going to have surgery and do what the surgeon says, and then what the oncologist says. I have instructions, and I'll follow them. I have no control over this tumor and what it does.
For that reason, I am going a thousand miles an hour in my house and at work. Taking huge piles of things to recycling bins. Talking with all the people who are supporting me at work: my dean, human resources, the new interim director of Women's and Gender Studies, the chair of the WGS Community Advisory Board. Aligning all the bits and pieces of my portfolio for a full professorship. Talking with my editor. Making plans for who'll take care of Maybelle while I'm gone. Cleaning the guest bedroom so that when guests arrive they'll find a cleared-out space to stay and proclaim how comfortable and attractive it is.
These are the sorts of thing I'm doing right now. I have control over all of this. Very good distractions. While I wait.
I'm in a moment where I'm surrounded by generosity, from people locally and afar. Surrounded.
Is it worth listing some of what they're doing? Wonderful local friends, and people I barely know, want to bring food to help me recover. They want to create something in their own kitchens, the kinds of luscious meals they wouldn't usually fix for their own families or themselves. Andrea has created a calendar scheduling the meals that will arrive in my immediate days of recovery, as well as in the six weeks of my radiation.
- Jonathan Boncek
Leigh and Claire are making it possible for me to go through the process of being promoted to full professor, which is happening this fall. I'm creating all the main components (my narrative, copies of the things I've written, student papers with my comments), and they'll organize this stuff and put it all online. It's a chunk. Hours of work. And they're doing it.
Administrators here are glowing examples of exactly what you'd want: supptortive and happy to make this work in whatever way they can. I will be on medical leave. They've made that clear.
And Leigh created a site on Rally.com for Maybelle's Fun Fund. People from anywhere and everywhere can donate money to help support babysitting. I'm single and will need help. My mother and best friends are taking turns being live-in support, but they can't do it forever. So I'll have the funds to invite babysitters — people Maybelle adores — to come help. This site is growing and growing.
I have fucked up feelings. I guess the more appropriate way to say that is that I'm experiencing complex feelings. And they're fucked up.
I'm getting emails from students, former students, colleagues, friends who are offering their love and prayers and good vibes. They're asking what they can do. They want to be with me. I've gotten emails from colleagues across the country who are sharing how much they're thinking of me, the work they want to do with me when I've recovered. I'm hearing from students I worked with very, very closely a year ago or a decade ago — students who've been such a great part of my life. I talked with an alum yesterday, a student with whom I worked very closely while she was with me. She wanted to hear my voice, to hear me say how shitty things are.
And I said it. Things are shitty. Everything is triggering pain.
Is that fair? So many people reaching out. So many people sending love. And I have fucked up feelings. I guess the more appropriate way to say that is that I'm experiencing complex feelings. And they're fucked up.
I feel guilty: I don't deserve this much generosity. It's more than I've ever experienced. It's coming from so many places, so many times. People I've never met are sending money. People I've never met who are friends of my mom's, or single moms who've heard about me, or friends of the many friends on Facebook. I can't possibly deserve this much. What in the world could I do to be worthy of this?
And if I'm not guilty, if I do in fact deserve this generosity, then it can feel like evidence that I'm going to die soon, that the brain tumor will kill me. The beautiful words that people post online and send me can feel like obituaries: "Alison transformed my life. I'm so grateful that I got to work with her." "Let's raise money for Maybelle, since Alison won't be with her long." "We'll feed her while we can, because she's on the decline."
Let me be clear: nobody is writing these things! Nobody's writing an obituary. Almost every message ends with some version of, "You're going to do great!" "Kick that tumor's ass!" "I can't wait to get together once you're feeling better!" But sometimes death is what I read, what I see and hear.
It's three days until surgery, and I'm feeling vulnerable. Afraid. Sad.
The generosity is crucial — it's holding me up. And I'm still in so much pain.
Maybelle's having a great summer. Every day she's all smiles, soaked with pool water or stretching into her leotard for dance class. But when we've made it through our schedule for the day, she ends the list with, "Then our new home." And I'm always able to say, "Yup, that's how our day ends. We'll be home together."
Yesterday, the day before my mom and I headed to Duke, she repeatedly told one of her beloved babysitters, "Mama. See Mama!" Her babysitter was able to confirm this fact. But this morning, in the hours before I leave town, Maybelle is following me around. It's an unusual amount of attention from her. Of course, I'm reciprocating. I'm having to pack a bit, but I'm trying to hold her as much as possible, to sit beside her, to dance with her.
It is breaking my heart — making me feel physically like I'm breaking — when I know that she'll have seven days away from me. Those days feel so long. I'm afraid that she'll be sad, confused, devastated.
New home! Where is Mama?
Seven days is tough. That's a long time for someone who's almost six. It can feel like forever, and I want to hold her and hold her and let her know how soon I'll be home.
But of course this heartbreak is about more than the seven days of me being at Duke Hospital. When I think about these days away from her, I'm also thinking about being gone from her life. Really gone. What if I'm gone? How does a child make sense of that, make it through that? How much love will surround her to lift her and carry her through that?
Chris Haire, my editor at the City Paper, emailed: "I've long since gathered the prognosis is grim. Do you mind telling me how grim it is?"
I wrote back, "There's no way to know. This is all so mysterious. But the neurosurgeon said three to five years. Three different doctors, including my oncologist and my neurosurgeon uncle, adamantly contradicted him, but they couldn't say, 'Oh, you'll be healed! It'll be fine! You'll live to 80!' So I'm carrying all that around with me. Sooner or later I'll get used to it, and it'll just become part of my life as I understand it. It won't be such a painful weight."
He responded, "I hate to say it, but that's good to hear. I was expecting something even more dire, as if three to five ain't dire enough. At the very least it should give you some time with Maybelle. But geez, man, ugh."
No one in the medical community has told me that I'm going to die this year. Initially, I was terrified that it was time for me to find a hospice center that would ease me through these final months. That's not what's necessary right now.
But geez, man, ugh.
I think about living for three years. Maybelle will be nine. What will happen to her if I die when she's nine? It's too young. She'll be in second grade, reading Alexander and the Terrible, Horrible, No Good, Very Bad Day, learning boundaries for where she can ride her bike. Too young. She'd be too young to go on without her mother.
I guess I'd think that about any age: Maybelle at 15, 20, 30. Ideally I want to die so late in life that Maybelle will be fully grounded as an adult, so late that she'll be sad but not surprised. She'd sit with me in the hospice room, holding my hand and the hand of her partner, watching my painless last breaths.
That can't happen now.
My brain tumor surgery is tomorrow morning. It starts about eight hours from now.
So for that reason, I'm offering a slightly more upbeat post. I'm not going to be falsely cheerful, but I'll share a few things that aren't entirely focused on fear/danger/pain. Instead, I'll tell you other aspects of this process.
For instance: last night my mom and I arrived at our very nice hotel to get ready for today's 8:30 a.m. pre-op process. I went out to the car to get my suitcase, which not only has my clothes, toothbrush, and books, but also my medicine. The seizure medicine. Which I have to take every morning and night. The suitcase is fairly important. So here's evidence of how freaked out I am: the car was empty. No suitcase. I carefully packed it, then left it at home. Because mom and I were able to get replacement seizure drugs at CVS, the situation was funnier than it was distressing.
And here's another example: After I wrote about gratitude and pain the other day, I've gotten probably 20 emails from students telling me how important I've been to their lives — in ways I wasn't aware of. Plus, as I'm sure you've noticed, there have been some powerful comments online. Wisdom. I'm trying to breathe it in.
And another: after I went through a series of exciting pre-op activities (urine test, blood test, EKG which required a guy to put all kind of pasty stickers on my naked boobs), mom and I were told by multiple staff people — including the admissions person — NOT to be admitted until we'd had some good food to eat. "Once you have your bracelet on you can't leave," they sort of whispered, "So go now!" We went to Nosh and I had a fantastic brunch: French toast with peanut butter and bananas. The best food I'll have (and have the appetite for) in days.
And finally, I'd like to celebrate a friend-from afar, Kris. She became part of my life five years ago, when I was diagnosed with a brain tumor, because she'd had one recently. A women's studies friend had connected us. The brilliant thing she did was text me with jokes every day leading up to the surgery. She's doing it again! It's fantastic. I'm eager to read every text she sends.
So I'm going to offer two. No. 1 is my favorite. No. 2 is most appropriate to this evening.
No. 1: Two penguins walk into a bar. The third penguin says, "Huh — you'd have thought the second one would have seen it."
No. 2: A brain walked into a bar. "I'll have a pint," she says. "No way!" says the bartender. "You're out of your head!"
Aug. 15, 6:32 a.m.
I'm in the pre-op room at Duke, waiting for my brain surgery. My body is under so much control that I'm surprised I can write on notebook paper. Two of the three fingers on my right hand have been poked for glucose. I have a blood oxygen tube on another. IV, blood pressure cuff, EKG pads and wires. Knobs are glued all over my scalp to function, as one neurosurgeon said, "Like a GPS for your brain."
I've had to tell my birthdate every couple of hours to confirm my identity, and I keep having to tell people why I'm here ("Brain tumor surgery." "Right!"). Reasonable questions to confirm who I am.
This will be over today, and I'm grateful.
In the next few weeks after the surgery, we'll see if I can remember names. If I'm able to put together sentences that matter to me, if I'm able to communicate.
I want all these things. And I want to be alive, functional, for Maybelle. Able to let her know how much I love her. I've been thinking about her constantly — had dreams about her, imagined her comfortably asleep with one of the families she and I love. I'm imagining the feeling of her body when I hug her.
Maybelle. I want to stay alive for Maybelle. I know that lots of other people love me, but they're adults. They'll survive the grief. Maybelle, though, is a child. She's been with me since she was born. What would she do without me? What would I do without her?
So here I lie, six in the morning, beeps and murmurs and machine hums all around the room. Soon I'll talk to the anesthesiologist. And then I'll be asleep, while my family waits for hours and hours to learn what's happening.
I'm now curled on the sofa in my home, grateful to have been released early, grateful to be home. I'm having incredibly bad lan-ttguage skills. Words, phrases, how meaning emerges. My mom is typing this.
Three days ago my neurosurgeon removed a quarter of my skull and dived into my brain. I was quite awake for the surgery, so when it was time for me to read cards or talk about Maybelle to the speech guy, I could. And I can still remember the basic words I was supposed to be able to demonstrate (like seeing a picture of a duck and saying, "Duck"). I'd also coached the speech guy to bring up Maybelle in the conversation since she'd be a motivating factor to make me want to stay awake. My neurosurgeon did some surgery, then he brought out the in-room MRI to see what other bits of tumor were still there, then he dived back into my brain for another round.
Later the doctor came in and said he'd gotten more than he expected: almost all of it.
After six-plus hours of surgery, the nurses and PAs had to work for a few hours to get me to stop vomiting. But after they got that problem solved, they were ready to let me go. We got to Charleston on Sunday afternoon, well before I thought we would.
The funkiness of my language hasn't yet become distressing, but that's because they told me that it was to be expected, and it will go away. For right now it's good for me not to go solo in a conversation. For instance, my mom has said to me, "Honey, you've used the word 'intimate' three different times, and it doesn't apply to any of those situations." It's good I got the semester off from teaching, because the students would have thought it was hilarious.
[Unlike the previous passage, I typed this one myself.]
This speech thing is fucked up. I try to find a word, and it's gone. I'll say what I think is a real sentence, and sometmis my mom looks to me with a sweet grin: "I think you meant Charleston." But since I'm working my ass off, I can sometimes speak a universal sentence, after a nap or first thing in the afternoon. That's HARD for me. once six weeks have passed, my communciatino skills will be up to 90%. I think that may all the skills I'll get — -9o is it — but right now that's not freaking out. I can do this. I can read, write, ad tachin n the ways that matter to me. I am still me, even a strugglg me. The struggling will be hard. Writing this much right now, eve withot making corrections, is challenging. Challenging. Will I be able ot read and writing for fun?
But eqally important: I'm in this moent –this moment — that I've temporarity steped away from my fears abut Maybelle. She's very joyful. Incredibly well loved. For this moment, I'm not sinking into that spot where I'll abandon her and she'll have to learn an entirely new way to live her life. Even writing that right now I find that it's not triggering e — not at this momet.
[I've realized that I can write if I wait until I'm well rested or if I'm entirely relaxed.]
Before Maybelle was escorted upstairs for her bubble bath tonight, she sat beside me on the couch. I was reading an easy novel, and Maybelle lay against me and started examining my scar as she's done every day post-surgery.
"Mama's head," she said. Her fingers were incredibly gentle, tracing the black sutures on my scalp, touching the shaved path that exposes a deep slice, a trail that travels from my part toward the back of my skull and then all the way back to the spot where my ear and face join. She's been doing it every day. My hair's growing back, but it doesn't matter: this is just how Mama looks. My scar doesn't distress her.
- Jonathan Boncek
The adults around me are circling this visual element of my body. In many ways I seem normal: I'm wearing comfortable clothes that are both pajamas and hanging out clothes. I have perfect bandanas that my sister-in-law bought that hold my hair back. I'm smiling. I'm talking — you know, talking to a very limited extent, just after I've slept, but still. It's interesting in this context for me to watch these adults, to watch their intense kindness as they circle.
"The staples are punk as hell."
In the pieces of writing about me all over social media, several people have said I was someone with a beautiful soul. They talked about brilliance, passion, bravery as capturing who I am. I'm an inspiration. A hero. I sit and hear what they're saying. I sit and read their words. Their words are beautiful: repeated mantras, breaths of fresh air, visions of who I am in this mysterious moment. They suggest that I can change who I am. I can even change my hair part, use the right side of my hair to obscure the scar. It's me. It's my body. The scar doesn't have to define me.
And then there are some different visibilities. When I forgot to wear my bandana this morning, my tattoo-covered next-door-neighbor-guy saw me. "You're a punk girl!" he announced definitively. A day before, a friend of mine from high school had written the same thing: "The staples are punk as hell. You'll be the toast of the Charleston goth scene."
I'm a person who wants this scar to be visible. I don't want to be magical, heroic. I know that I want this scar to be here with me. It's part of who I am. I don't want to be a hero. I want to sit on the couch with my curious daughter.
I acknowledged the anniversary: I'd had brain surgery a week before. A full week. I'd made it.
What does it mean?
When I tell people about the brain tumor, the surgery, the response I get is often surprised: You're awake! You're talking! I'm able to do so, to have a few hours a day when I really am alert. I've learned that I'm pushing myself even when I'm not aware. A friend will leave and I'll collapse, finding it difficult to walk without leaning against the wall. Then I go to bed.
Now it's Aug. 24, another anniversary, Maybelle's sixth birthday.
Early this afternoon Chantelle took Maybelle to play in the fountains at James Island County Park. I took a shower. My mom was downstairs, quietly doing laundry. So after my shower, I lay in bed. Eyes closed. Muscles completely still. I felt every part of my body touching the mattress, my head nestled in the pillow. Breathing. I wasn't asleep. I could feel the air in my room change as the air conditioning came on and turned off. I heard a person downstairs walking by with his dog.
What does it mean?
I have brief moments throughout the night. What defines my life? What matters to me?
Through the months and years of my life — my ordinary life — there are so many things I'm passionate about, and they're central. I'm fortunate to have a life that isn't defined by rule following, by meaningless procedures that have simply become the way things are. I'm not having to tiptoe behind rows of paper, being directed from one meeting to the next, taking notes while I'm thinking about what really matters.
In my ordinary mornings, Maybelle and I have our breakfast while she reads what I've written on her board:
Today is Tuesday.
I am eating O's and milk.
Then I will go to ECDC. Hurray!
Later I have dance class.
After I drop her off at school, I get to shut the door to my office and write. Rather than being polite, I get to be outspoken about legislative homophobia. Or I can turn to generous women I've interviewed, who've shared with me their experiences of prenatal testing and Down syndrome.
Researching. Thinking. Words on the computer screen.
Coffee with friends.
Reading, hands clasped around a book, highlighting sentence after sentence.
Walking into my own classrooms, fingers tingling, eager to encounter students' thoughts and questions.
Picking Maybelle up in the afternoons: "Hey, Mama! Going to dance class! Ballet!"
That isn't my life right now. This morning Maybelle woke up and brought two of her dolls into bed with me. She was quiet. She sat beside me as I lay in bed, and her girls gently danced in her lap while I stroked her hair. A bit later my mom came and got her, and they began their day downstairs, happily getting ready for school.
I'm in a moment now when everything has gotten oddly quiet, where I have brief moments of soft awakeness that slide back into silence, into glimmers that diminish little by little, and then I'm asleep.
I have no lists here. Yesterday I tried to compose a list of priorities: Priorities! Priorities! What matters the most? But it immediately began stretching, spinning, adopting pictures as well as words, heart symbols, illegible letters, circles on the page. Of course, writing matters to me: here I sit at my computer, almost exhausted, knowing I have just a few minutes to write. If any adult were here at this moment, I'd lovingly be escorted to my bedroom. Reasonably. Appropriately.
But for this moment, I want to write. I want to allow these tendrils to have a space to touch, just a small spot where I can trace them, revisit them. It's such a different kind of writing in this moment. Nothing like what I've been writing. Rather than outraged, I'm curious. Curious.
Comparisons. I've heard so many: "My husband is in such pain from his back surgery. I'm so glad that you're not hurting!" "I couldn't walk for a month after my hysterectomy." "When they removed my brain tumor I lost one eye and my ability to smell. And I'm so grateful."
When my next door neighbor saw my scar for the first time, he was stunned and gave me a big hug. "I was going to complain about the cavity I'd just gotten filled," he said, "But now I can see that my dental work was great!"
How do we compare the cavity and the brain surgeon? The comparisons just can't happen.
How do we compare?
I had brain surgery on Aug. 15. By the time you read this article, I'll have started on radiation and strong chemotherapy. These treatments will last for months. I have no idea how they'll affect me — my body, my mind, my abilities, my feelings.
I'm surrounded by friends, by support, by encouragement and love. And I don't know where this story ends. Should I wait until I'm finished with radiation before I tell you? Wait until we see what the chemotherapy is doing? From the MRI results in a couple of months? A couple of years?
When will I get to share my happy ending?
But, of course, there's no real ending for stories like this. So this, I guess, is how I'll end it:
I'm sitting on the front porch steps with Maybelle. The early morning sun is rising. She's singing "White Coral Bells" while I sip coffee, watching her.
She pauses, looks up, and says, "Birds."
"I hear them," I tell her.
"Yeah," she says. "Good morning, birds."