Honey Badgers and Empathy Bears
Two days ago, I arrived back in Chicago for HSCT transplant for MS. I have just been admitted into the hospital room where I will stay for the next 2.5 weeks. It’s a pretty nice room. I’m doing fine, and although I have a lot to tell you, I want to tell you about being home first.
I was home for three weeks in Raleigh. It was such a whirlwind, I had no time to post…
We have the first days of school, open houses, meet the teacher, PTA meetings, the climbing gym, coffee with friends, drinks with people, bridge, and brunch. Everything is good and fun, but it is emotionally exhausting. Everyone falls into one of two categories:
- I’ve told you all my secrets.
or
- I’ve told you nothing and you wonder if I’m suddenly the punk rock girl you always suspected me to be.
How am I going to present myself to everyone? I need to figure out how to act. I decide to be like the Honey Badger, because the Honey Badger doesn’t give a shit. Either you know about me or you don’t. It doesn’t matter. I am the Honey Badger. I don’t even give a fuck.
(Watch this video if you are one of the 7 people who haven’t heard about the Honey Badger. )
With a purple mohawk, it was easy to pretend to be the Honey Badger. I looked like I meant it. But when my hair started to fall out, it got harder.
I thought my hair would fall out all at once, on, say, a Monday at 9:00 am. But it fell out in spells. It would get itchy, fall out for an hour or two, then stop. I could pick at it like a monkey picks at vermin, and this was surprisingly satisfying.
Eventually, enough fell out that I started referring to myself as “Patches MeGee.”
See that bald spot in the back, that’s where my hair rubs the pillow every night. Pretty, eh?
If you look up what to do when your hair starts falling out, you will see advice to shave it all off. The blog-o-sphere says is too demoralizing to watch it go piece by piece, and you will look crazy and homeless. But deciding when to shave your hair down with a razor is like deciding when to put your elderly dog to sleep. Is today the last day? Nope. Not yet. (Clearly, I waited as long as I could.)
Skinny has volunteered to shave his head bald in support of me. This is a very sweet thing to do. I decide that I want to do it in the Lot. (Every Tuesday, our gang goes climbing at the gym, and then at 9:00, we drink beers in the parking lot. We call it the Drinking Lot Club.) I text the gang: Skinny are I are going to shave our heads in the Lot tonight. We’ll be like twin weasels.
Stephanie texts back: I’m into weasel shows.
Gina texts: I’m into weasel shows, too.
Anna texts: Can’t wait to see the weasel gang.
It makes me giggle to think of us as a weasel gang. I imagine me and Skinny with little bandannas and guns.
When I get to the gym my friend Sheila asks if I have gotten sun, but I say, No, I’m blushing. She asks why, and I tell her that it’s hard to be losing my hair, and it’s possible that I am embarassed. I lift my scarf and show her Patches McGee.
In the Lot, Stephanie shaves my head, and Anna shaves Skinny’s. Anna’s getting married that Saturday, and we joke about her shaving her head before the wedding. Her fiancé, Amanda, would murder her. Which is funny. There is more lackluster joking, mostly about the heists and bank robberies that Skinny and I will pull when we both look like slippery weasels. I’m having trouble finding the joy in the moment. I wanted this to be fun, but I can’t help it. I feel sad about being bald.
The truth is, I am not the Honey Badger. I am vain. I’m overwhelmed. I don’t know how to act normal. I want to lay in the dark and stare at the ceiling. I want to send a mannequin to the thousand things I have planned with friends, co-workers, acquaintances, and teachers. I wonder if people will believe that a mannequin of Halle Berry dressed up as cat woman is actually me?
Here are some pictures of me and Skinny.
Everyone says I look beautiful bald. Sure, I’m gorgeous, but I’d rather have hair. I think of that internet meme about empathy and sympathy. It has a Sad Fox, a Sympathy Goat, and an Empathy Bear. In the response to the Fox’s sadness, the Sympathy Goat says, Yeah. That’s bad. Want a sandwich? And the Empathy Bear says, I know this is hard. And I’m here.
Shaving your head is what an Empathy Bear would do, and I’m grateful.
That night, Stephanie catches me on my way back from the bathroom and says, You’re doing a good job.
What? I say.
You’re handing this with grace and humor. It’s hard. Nobody wants to be bald.
All my tendons go loose. I can’t take this kindness because I am too busy holding myself together and being the Honey Badger. She starts to hug me and I say, You can’t hug me now. I don’t want to cry.
Stephanie wipes away her tears and nods. She’s an Empathy Bear, too.
This is harder than I thought it would be. And it doesn’t stop with just being bald.
I get prickly heat because I wear a head wrap to pick Zach up from school. It is too hot, I’m a sweaty girl, but I am too vain to take off my head wrap.
I have an abundance of sore, itchy pimples.
Some of my hair is growing back in…in patches that make it look like I have male-pattern baldness.
And this morning as I am getting ready to go to Northwestern to be admitted for 2.5 weeks, I notice something else.
The hair that is growing back in is white.
Maybe I was never meant to be like a honey Honey Badger. That’s not my style.
I’m more of a fox, anyway.
Filed under Stem cell transplant for MS | Tags: baldness, chemo, Chicago, hair loss, MS, stem cell transplant | Comments (11)Monkey Girl
The problem with dying your hair purple right before you go bald is that it leaves purple stains on your scalp. I look like someone chopped at my skull with an axe.
This is not the look I am going for. I shower and wash my hair with soap. The purple spots stay, but I scrub a bald patch on the top of my head. This is not the look I’m going for either.
My intention was to embrace the baldness. I’m gonna rock out with my cock out. But this is not how I feel. I have male-pattern baldness with spots. I. Do. Not. Want. I feel sorry for myself.
I had a friend in college, Bob; he’s a drag queen now, I think. I lived with him when I shaved my head, and he wanted to do a photo shoot with me in a pink frilly dress with a monkey tail and monkey gloves. We had captions: Monkey Girl eats a sandwich; Monkey Girl goes to the beach. I am brushing my teeth when I think: Monkey Girl is brushing her teeth.
And, I have a problem. I’m out of wine. Stephanie is coming over tonight, and we usually drink wine while our husbands have band practice. The AirSupply song is looping in my brain: “I’m all out of wine, I’m so lost without you.”
I explain to Chris, and he offers to go. But I can’t hide for the six months on the off chance that I will see an acquaintance.
I only buy my wine at Ridgewood Wine and Beer, on principle, because I like them. They’re nice guys, maybe misfits, who wanted to start a wine store. I know that Patrick’s dog died and that Ryan used to sell wine to Stephanie out of the trunk of his car. But, I just want wine. I wish I was more of a bitch so nobody would be a nice acquaintance. I don’t want to explain.
This is not a moment when I expected that courage would be required. I need to nut up. Monkey Girl will go to the wine store, the PTA meeting, the climbing gym, soccer practice, and the grocery store. Monkey Girl will be okay.
I go. It’s fine. They’re going to save my favorite rosé for me for when I come back in October. Rosé is delicious, but it’s been giving me a headache because my immune system is haywire. But maybe after all of this, my immune system will not think that a rosé the enemy.
I’m making every interaction exhausting because I am building it up in my head. Every person I see either knows what’s going on, or they don’t know. It doesn’t matter. What I need to understand is this: they just see me. They see Karen.
Monkey Girl is wearing a hat.
Filed under Stem cell transplant for MS | Tags: chemo, Chicago, devics, hair loss, HSCT, MS, stem cell transplant | Comments (24)