The Story of How Eye Sparkles and an MRI Machine Kindled a Brand-New Friendship

I’m so sorry I haven’t called, I’ve been dealing with some health stuff.

I’m so sorry I haven’t gotten to that yet, I’ve been dealing with some health stuff.

I’m so sorry I haven’t been around, I’ve been dealing with some health stuff.

I’m so sorry I haven’t written lately, I’ve been dealing with some health stuff.

About a month ago, I realized that there was a spot in my vision, and that had been there for days. It’s just a little spot, shaped like a teardrop turned sideways, and inside it sparkles, or shimmers, or – to use the medical term – scintillates.

The next day I left work on my lunch break to go to the doctor. The doctor ordered me down to UT Hospital that afternoon for a CT scan and an appointment with the eye specialist. A month and a slew of tests later, there’s still no viable theory. And the spot persists.

It doesn’t hurt, it doesn’t interfere with my ability to read or drive or work or care for my child, but there it is – my own personal “eye sparkles” as my best friend has named them.

My body and I don’t talk much. A few days ago I was even surprised by its reflection in the window. What was that? An image made on darkened glass – a hip, a pocket in blue denim wrapped across it, the hem of an old T-shirt. In a moment the pane is dark again. What was that? Oh! That was me, that’s my body, walking past the window.

Even if we’ve never been on great terms, my body has always functioned about as well as I could hope it to and has borne my neglect and disdain with surprising resilience. For the most part we have lived our parallel lives without too much conflict, and by this I mean that my body has silently withstood my treatment of it and I have steadfastly ignored its occasional requests.

The morning I first went to see my doctor, I sat in the exam room listening through the door to the nurse on the phone scheduling me appointments for a CT Scan and to see an Eye Specialist at UT Hospital that afternoon. She wrote them down in ball point pen on a green post-it note, handed it to me, and sent me back to work.

A few hours later I wandered the endless unmarked hallways at UT, clutching my green post-it note. Find the office door, push it open, first one waiting room, then another, a nurse, another nurse, What letter do you see? Look at the yellow dot. Click the cursor. Blink. Look up. A lot more winding hallways. Another waiting room. Lie down on the bench. This might be loud. Just a few more seconds.

When I opened my eyes, they informed me cheerily that the Radiologist had already read the CT Scan, that it was normal, and that I was free to go. They already read it? Who are they? They aren’t going to talk to me? I just leave? I got up and walked out of the room, out of the office, and out of the hospital where my dilated pupils struggled against the full springtime sun.

 

A few weeks later at a different hospital I showed up for an MRI appointment after deciphering another slalom of unmarked hallways and cryptically labeled maps. A man in scrubs called my name and I followed him through several sets of doors and rooms, each with its own caution sign on the door, each door giving a stronger warning than the last. The man in scrubs gave me a hospital gown and motioned to a closet with a curtain. Then he left. I sensed the expansiveness of the complex I was in, several layers deep in the center of the hospital without the chance of light getting in. There was no one else, and no sounds but the hum of large machines resting. I took off all my clothes but my socks, and folded them neatly on top of my boots. I tied the hospital gown as tight as I could.

Eventually the man in scrubs came back for me and led me through yet another set of warning signs into a small room with a huge machine in the middle, sleeping like a hungry dog. I understood my body was going to be closely restrained and pushed into the middle of that big machine. I started asking a lot of questions:

The form I filled out asked if I have any tattoos, is that going to be a problem?

No.

Are you going to restrain my head?

Yes.

How long is this going to take?

About forty-five minutes, once we get started (he glanced in irritation at his watch).

Are you going to give me contrast?

Yes.

What’s that like? Don’t some people get nauseous?

Some people do. Most people are fine.

He tried to start an IV in my right arm, but after a while said only,

“That vein blew, so we’re going to have to try the other side.

What do you mean my vein blew? What does that mean?

Sometimes it gets puffed up, and then you can’t get the IV in it.

He pushed earplugs into my ears, covered my eyes with a wash cloth, and screwed a restraint down over my head. At the last second he pushed something rubber into my hand. “If you need anything while you’re in there just squeeze this.” The bench raised up and I sensed the closeness of the machine.

I climbed deep into a rarely accessed chamber, where I wrapped a blanket around myself and waited for a sign that it was safe to come out.

After seeing four doctors and close to 20 medical professionals of varying titles, we still don’t know anything, no one has any ideas, and no one is calling to check on me. At some point in the middle of all of this, I started talking to my body. The dehumanizing experience that is inherent in the current Healthcare System put us on the same side of the struggle for the right to be cared for. It looks like we might end up being friends after all.

Ironically, the only test that’s returned any helpful information was an allergy panel that I requested myself on a hunch. The nurse who called with the test results told me that I “have multiple allergies” and that the doctor recommended that I “see an allergist, because you have so many allergies,” but refused to read me the list because “it’s like six pages and all I do all day long is make phone calls.” She agreed to mail me my results, but warned that it could take up to two weeks.

The list included a number of things I ate almost every day: Wheat, peanuts, almonds, walnuts, soy. Plus a bunch of things I rarely eat, like scallops.

So this morning I had to have a little talk my new friend, my body. It’s not that I don’t want to take care of you, or that I don’t want to work together, it’s just that we’ve never really had that kind of relationship before and I’m just afraid of commitment.

I’m three weeks into my new wheat-nut-soy-seafood-free diet, and while my eye-sparkles are not gone, they are sparkling at a much lower frequency. There’s still no conclusion – or even any ideas – from The Doctors about what it could be. But this is not a case study. Nor is it an essay about the many failings of American Healthcare. This is a story about how I finally, timidly, just maybe, am tip-toe-ing into friendship with my body.

 

 

 

Don’t Leave Your Friends Behind

IMG_1144As soon as I found out I was pregnant, I started digging through bookshelves, reading lists, cardboard boxes, anywhere I might find a book about motherhood or parenting or birth that included my experience. I have been digging for 18 months now. As a young person with radical politics, who has made alternative lifestyle choices, who came of age in the punk scene as an artist and an organizer, whose path to motherhood and immediately single-motherhood was ‘bumpy’ at best: when I performed the ritualistic anxious reading of What to Expect When You’re Expecting I couldn’t help feeling like they were talking about someone else. Someone with a husband and a house and a steady job and a 401K, someone who probably has a lawn and a reliable car that was made after 1983. Someone who is supposed to have kids.

Where was the book for mothers with non-traditional family structures? Where was the book for mothers who ride bikes and hang out at punk houses, who grow gardens and organize and spend their spare time seam ripping Goodwill dresses? What about mothers who still want to fuck shit up, who want to raise our kids and stay in the movement? Stay in the community? Stay who we are?

As equally as I couldn’t locate myself within the narrative of “motherhood” that’s most affirmed in our society, I also couldn’t locate myself as a mother in the scene I’d come of age in. I’d fallen into a crack between the worlds.

A few weeks ago I found the book I’ve been looking for. One of my oldest friends, Jonathan – who does not have kids himself- asked if I wanted to be part of a book club to read Don’t Leave Your Friends Behind: Concrete Ways to Support Families in Social Justice Movements and Communities (Published 2012 by PM Press, compiled and edited by Victoria Law and China Martens).

It’s a collection of short essays, stories & lists, written by parents of varying identities who are part of radical movements & communities. Reading, I felt how one does when your experience is affirmed – Oh, it’s not just me – that’s a real thing. In a very candid voice, the essays convey the mixed experiences of becoming a parent as a member of a radical community – the unique challenges and misunderstandings, specific concerns and difficulties, the ways they asked for and received support, built structures of mutual aid, and kept on living their lives and doing their work. The crack between the worlds all-but closed in my mind.

In the convening of our book club we focused our conversation primarily on how we could better support the parents & children in our community. The book itself provided a lot of concrete ideas for supporting families, and we brainstormed some specific adaptations for our place, time, and needs – a kid corner at our local community space, baby proofing at punk houses, non-parents offering regular childcare help, parents taking turns having sleepovers giving each other a night off.

One thing I hear from non-parents is, Wow, I had no idea. I never would have thought of that – I don’t have kids. It is the nature of humans that empathy only extends so far beyond what we have experienced ourselves. And so I share this list – it is incomplete, but it is a list of ideas affirmed both by the stories in Don’t Leave Your Friends Behind, and stories told in conversations between the parents in my life.

Concrete ways you can support families in your community:

  1. Affirm, affirm, affirm – Anyone who falls outside the mainstream narrative of what parents should be will have their parenting questioned and criticized with a regularity that parents closer to the center won’t experience. For myself, as a single mom, there are huge swaths of my parenting that no one even sees (like on the nights I only sleep 4 hours because my kid is getting a tooth, or how I have read the same bedtime story 31 days in a row with enthusiasm and creativity). Affirm the parents around you: I see how hard you are working. You’re doing a great job with your child. We are glad you are part of our community. I think it’s so cool that you do _________.
  1. Build relationships with the kids around you. We want our children to be welcomed as valued members of the community, just like the rest of us. Not comfortable with kids yet? Engage with them just like you would anyone else: What’s your name? What are you interested in? What games do you like to play? Be who you are. When you have a good relationship with a kid in your community, you are more able to step in and support parents in organic ways – like taking a rambunctious toddler for a walk outside to look at birds, or playing with a child at a potluck so their parent can sit and eat.
  1. Baby & toddler-proof your house. We promise we still want to come hang out with you, but if your floor is too filthy to put our baby down or we have to spend the whole visit keeping our kid from choking on bike parts or pulling rickety bookshelves over on themselves, we’re probably going to start declining invitations. If baby-proofing the whole house is too much work (which it may well be), just choose one room. Don’t know how? Ask for tips. Keeping it tidy all the time won’t work? Just sweep before the next house show! We appreciate even small gestures.
  1. Organize childcare. Any event or meeting where it is not appropriate to have children in the room needs to have childcare. If you can’t organize childcare, or your event is intentionally intergenerational, an organizer should make an announcement at the beginning of the meeting that is something like this: Children are welcome here, and we are fine with their noise and movement. Better yet, integrate children into the event – give them a job to do, plan workshops in a way that will engage children as well, make space for their voices and ideas to be heard.
  1. Ask questions. We want to talk about being parents, we want you to be interested in our lives – especially the mundane details that can feel so harrowingly isolating, like exactly how many times my baby woke up between 1:00 and 5:00 last night, or how long it took me to scrub the oatmeal off the wall, or why I think his bedtime routine isn’t taking hold. Make sure you ask if it’s wanted before you offer advice.
  1. Make concrete offers of support. While it’s great to hear, Hey, if you ever need any help just let me know! I’m down! open-ended offers still leave the burden of asking on the parent. Asking for help is guilt-inducing and often we won’t do it without having a “good” reason. It’s even better to hear, Hey, next Thursday night I’m free. Can I come hang out with your kid while you go out and do whatever you want? Because the answer is yes.
  1. Read. Read Don’t Leave Your Friends Behind, or find another rad book about supporting parents. Organize a book club or a workshop or a community discussion. Ask parents how they feel and what they need. Just like anything else, educate yourself.

 

All my love and solidarity to the parents and families doing the improbable work of raising healthy beings in this crazy world, and to all the folks who hold us up and share the labor.

 

Seeing Robins, Part II

Ahead of me a man stepped off the sidewalk but his feet didn’t catch him. I heard the wet sound of his flesh and then the heavy knock of bone hitting the cold pavement of the road. He didn’t get up.

I had walked to the library, and I was now returning. The day was cold, the wind unrelenting, finding it’s way to bite at your most tender places. I hunched my shoulders against it inside my coat.

A man in a black suit had seen him fall, he snorted and said to no one in particular: You can’t drink and walk at the same time, before opening the glass door of a marble building and stepping out of the wind.

A woman with short grey hair looked down off the sidewalk at the man laying there in the road. She took out her phone. Does he need an ambulance? She asked. I stopped walking. Men were all around him, having risen from the shelter of the bus stop. Four men’s rough hands gripped his jacket to lift him. Their hands were bare to the winter day. They were cracked and raw. I never saw his face.

One of them looked at me: I don’t want to involve you with this situation, ma’am. His eyes were blue, glazed blue, as if un-seeing, but he looked at me. To the other woman he said: Yes. Go ahead and call. You had better. He put his arm around the man’s body like they were just going for a good long walk, but the feet never took ground.
Then I walked away.

Walking again into the wind all I could hear was the sound of his face hitting the concrete and myself just standing there. For days my visions had been full of robins, robins stepping off from the branches, as – I had observed – as one steps off the sidewalk: casually and perhaps with pleasure to float across the open space of sky as the sun settles behind the ridge. I had named myself saved by these robins and their stepping off, called by them to live again in the world of the numinous and the ordinary, to be a creature in the world of creatures.
And just as quickly I am shown the smallness of my sight. To be a creature among creatures means to stand at the edge of the water at sunset and watch the robins flying for sheer joy in the last light, and next to watch helplessly the slow stumble towards death.

It means to hold hands with suffering, to be revealed to your own inadequacy, to know always that once you walked away. Should I have stayed? Perhaps. But they told me to leave, and my son needed picked up from school, and any number of other things that draw us along self-centeredly preserving our own lives.

Now when I walk past that place on the sidewalk I look down into the road, looking for a stain of blood or some sign that a man’s body had lain there, unmoving, that it was grasped by four bare hands and lifted. I look for the man with the blue eyes, I want to ask him – is he alive? Where is he now?

But who am I to know these things? I, who walked away.