No hair, don't care.

The exhaustion of hiding.

Hi Friends,

I’ve been planning this letter for 3 months. And by ‘3 months’ I mean, 30 years. Do you know how exhausting it is to hide? Not just hide a medical issue, but hide from potential rejection from every human you meet?

In 9th grade I developed an autoimmune condition that caused my hair to start coming out in patches. Dr. Clemens, the family doctor, showed me a picture in his medical dictionary and smiled, “Don’t worry; alopecia goes away on its own.” My eyes had accidentally read the italics on the page that said, “In rare cases, the condition progresses. There is no current treatment or cure.” I did not want to be rare.

But by 10th grade, I couldn’t cover the spots with makeup or avant garde barrette configurations. The dozens of steroid shots in my scalp hadn’t worked. The 40+ nutritional supplements made me throw up. Even the ladies’ prayer circle failed.

My whole life I’d felt that something was wrong with me. Like what? Who knew. But there had to be some reason why I always felt like a fish in a tree. Kid logic is limited, so I internalized a confusion that it must be me that was out of place and … wrong.

So when, in 9th grade, my autoimmune system freaked out, it kind of felt like the inevitable next step towards total rejection: now my body was rejecting itself. My own physical self didn’t even recognize me or want me near it. I’ve come to believe that the only thing worse than being rejected by others is rejecting yourself. It’s a self-exile. A self-excommunication. And that solitary confinement cell is dark and deep indeed. And the desperate people standing ready to help aren’t allowed to get close enough to help, only close enough to see you suffer. Sorry, Mom and Dad.

I remember the night I told my mom that I was dropping out of high school or I was going to hurt myself. I didn’t mean the last part, but that’s what you say to scare parents when you have no other power to get your way. My mom wrapped me up in her arms and let me sob. She just kept saying over and over how sorry she was and that it was going to be ok. That was my last day of going to school. It was my last day on the basketball team. And the first day of my re-education in the classroom of WTF.

For the remainder of high school I locked myself in my bedroom with my cat and every library book that held hope for finding ground when life turns upside-down. I was on a survival mission. And hoping to find friendship among those with short legs who fell into a tall hole, too.

And I did. I found solidarity with unlikely friends—people like Dostoevsky. Externally, yes, I know that losing my hair bore no equivalence to the gulag; but internally, I absolutely was living on cold mush and hard labor. It was comforting to know that someone else had suffered, met his suffering dead-on and lived in its face, defiantly.

People like Kerouac. Who traveled from tall hole to taller, giving at least a fleeting sensation of movement. After high school I would end up following him on that road, going from Pittsburgh to Boston to Los Angeles to Portland to Scotland. In each city, I would hope to find that the change in scenery had magically changed my internal experience. That I would finally feel at home in my own skin. No such luck would be had, but I learned that even when you can’t escape your circumstance, there’s value in stomping around enough to not freeze.

People like Plato. Who talked so beautifully about the “real world” of forms outside of the cave that, for snatches of time, I was drawn up and out of myself. I spent days on end trying to access this world that I knew was there for me, there for everyone. At that point I didn’t have the internal resources or external supports to heave my sad bag of body parts up and out of the hole to really live there fully. But I had experienced the reality of that place of true belonging, and it kept me fed enough to not give up.

Pennsylvania homeschoolers are at liberty to stitch together their own education. I loved the creative freedom to study what mattered to me while my parents worked. I also loved getting straight A’s because I graded my own damn self. I went on a lot of walks in the woods, listened to a lot of Radiohead, and filled a lot of journals.

As I dug maniacally into worlds of ideas, I hit the bedrock idea that kept me from sinking into despair. It was this: that to exist is a good, in and of itself. That existing proves you have a place, that you have worth, and that you belong before you can earn it, before anyone can confirm or deny it, before you can eff things up with your “poor choices.” A few years ago I started calling this “bare belonging.” It’s the belonging that is bound up with our existence and can’t be taken away. I longed for this to be true, and to feel it in my lonely bones.

In 11th grade I got my first wig. I rode the T with my mom into Pittsburgh wearing a bucket hat and feeling ugly as shit. It was a financial strain, and it hurt to hear the beep of her credit card sliding through the machine. The fake hair did restore enough confidence in me to start leaving the house again, though it also marked the beginning of a new kind of hiding, of keeping people at arm’s length so that they didn’t “find out.” I call this the ACT NORMAL era where I just whistle around with darting eyes and hope no kids come up to me with blunt questions.

I didn’t let my own parents see me without my hair until five years ago. I couldn’t say ‘alopecia’ or ‘wig’ out loud til then too. And I couldn’t look in the mirror and see anything but Gollum.

There were so many decisions I made over the last 30 years out of fear of being seen as I was. As I am. I quit the basketball team that made me feel alive because I couldn’t stomach the idea of playing in a bandana. I stayed in a single dorm room in college, which short-circuited my social life, just so a roommate wouldn’t see me sleeping au natural. I said ‘NO’ to anything related to the ocean in case a wave took my hair out to sea. And I married a dangerous man because he made me feel accepted when I couldn’t accept myself.

I have, of course, told my inner circle about my heinous secret—every time met with nothing but love and support. When he was little, Noah saw me nervous about my new hair coming (happens every 4 years or so) and people saying something about it. He grabbed my face in his hands and said, “Mom, if people treat you different, they’re not good people.”

I’d done a lot of work to build self-confidence and to downsize other people’s opinions and felt ready over the last years to attempt a public “hair share.” But something has always hijacked the revelation. I was to share my story in a beauty campaign for a cosmetics company, for example. And I had a cover story set for publication in Guidepost Magazine. But I think this is way better for me to just tell you here and in my own way.

So, I have alopecia. And there is nothing wrong with me.

I hope that no matter what has gone wrong for you, you know that there’s nothing wrong with you. You are good. I am good. And nothing that falls apart in our lives can erode our bare belonging.

Can’t tell you how much it means to share this with you and trust it will be met with understanding from the holes you’ve pedaled upside-down in, from the caves you’re maybe still not ready to venture from. Feel free to message me about this post—it won’t be weird now that the bald cat is out of the bag.

Cat

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In other news! Now my energy can go towards:

PODCAST: Today the first episode of my podcast, “What Can I Bring?” goes live, co-hosted with journalist, Megan Botel. More than talking heads, we will host in-person gatherings across LA in local business spaces to explore how to live well together, and then do an act of belonging in the community. Our first event was hosted by Divine Vintage in Santa Monica to benefit local fire efforts. Join us next month on the Eastside! (links forthcoming!)

BELONGING WORKSHOPS FOR ORGS: Google xi and StoryCraft Lab created something called The Wheel of Belonging to help organizations create cultures of belonging through story-sharing. I’m one of the expert facilitators and was thrilled to contribute a tiny part to this just-released book, The Belonging Playbook. Let me know if you want to have coffee and look through it, etc.

MY BOOK: As a Valentine’s Day gift to myself, I’ve committed to spending the next 30 days finishing the book proposal that I began 5 years ago but have not been free to complete. Til now, baby. The book’s called, You belong: finding our way home on a new social frontier. And I’m pouring all my blood, toil, tears and sweat into it because I really do think it will be of help.