By Joules Evans
It was the best of times. It was the worst of times. This is a tale of two masks, this mane and this zebra pencil. It’s a comedy about a tragedy. One of my own doing.
But first, a tale of two sons.
Act 1: Matt. Matt has always liked (and still likes) to dress up as his heroes and superheroes. Davy Crockett. Indiana Jones. Andy (from Toy Story). Mario. Siracha hot sauce. Spidermat, I mean, Spiderman. The thing about masks is they hide our true identity. When Matt puts on his Spidey mask HE IS SPIDERMAN. Matt is underneath, but hidden. It’s a pretty epic mystery. Like how nobody spies Superman underneath Clark Kent’s glasses. But the other thing about masks is they can also reveal. When Matt puts on his Spidey mask he is revealing something about himself. Inside, he is a superhero. In his own way, he is and has always been out to save the day, save the girl, save the world. In a sense, in essence, HE IS SPIDERMAN. Even without a mask. And he has been all his life. Once when he was 5 or 6, we were at his little brother’s baseball game and it started raining. My little superhero took off his mask, in this case the shirt off his back (but to me it was a superhero’s cape) and put it on the bleachers for me to sit on so I could stay dry.
Act 2: Mikeyy. Not surprisingly Mikeyy followed in his big brother’s steps as far as dressing up as superheroes. Superman. Michael Jordan. Michaelangelo. Daniel Boone to Matt’s Davy Crockett. Buzz Lightyear to Matt’s Andy. Luigi to Matt’s Mario. Batman to Matt’s Spiderman. One thing that was revealed early about Mikeyy was that he is and always has been a peacemaker. And later, when he sometimes ended up dressing up as the bad guys because all the good guys were all, already taken by everybody else, it revealed something else about him. Like when he dressed up as Voldemort for the midnight premiere of the final Harry Potter movie. Mikeyy shaved his head AND HIS EYEBROWS. What it revealed about Mikeyy is commitment to the nines. He was Voldemort that night. Not only did he win best costume, but everybody in the theatre wanted their picture with him. What it hid was this mama’s utter shock at seeing my baby boy bald all the way down to his eyebrows, since I’d just grown mine back from fighting cancer. It was like looking in a mirror. Like I was seeing my own reflection, back in time.
Act 3: It’s just hair. That’s what I tried to tell myself when I found out I had breast cancer and that the chemo was going to be an ultimate wardrobe malfunction and make my hair fall out. #tbt to August 20, 2008. THE superpowerinciting incident of all inciting incidents in my life, in which this mask was lifted. My cancer… (yes, mine. I own it; it does NOT own me. Or define me. But it is part of my story. My story. I am the narrator, not my cancer.) …was caught early, thank God, because it was also the most aggressive form of breast cancer. 20 some years ago my kind was 100% fatal. But thank God for cancer researchers and specifically UCLA oncological superhero breast cancer researcher Dr. Dennis Slamon, for developing a silver bullet that worked for me (so far so good. Just hit my lucky 7 year cancerversary.)
Act 4: Before cancer, I had long dirty blonde hair with 2 incorrigible cowlicks on my crown. I was not a fan of those unruly cowlicks… but I wouldn’t have thrown the calf out with the bathwater, if you know what I mean. Anyway, picture Piper from Orange is the New Black, add a double cowlick and a red pencil in the ear, and minus the orange scrubs, and you get the gist of this mask before cancer. What this mask revealed was that I was a homeschool mom who never had time nor inclination to try and tame those cowlicks, and who was always losing her grading pencil. What this mask hid was the fact that underneath, cancer was trying to kill me.
Act 5: It was the Monday of all Mondays (and a chemo day to boot, Round 2 of 24) the day this mask was lifted, the day my hair fell out. It was the day after Matt’s 16th birthday party. Even though I knew it was just hair, and even though I knew that verse about not worrying about things cuz God numbers even the hairs on our head… I was still superpower freaking worried that my hair would fall out on his birthday and ruin the party. It hung in there for me like a champ, clinging on with its last non-dominant pinky toenail. But there I was the next morning, getting ready to teach my British Literature class at the homeschool co-op we were part of. The toast had just popped up when Mikeyy gently touched me on the shoulder and told me, “Mama, your hair is all over your shirt.”
The thing about cancer is you find out super quick there is not a lot you have control over, like you may or may not live to the end of the school year, or get to finish the job you started of raising and homeschooling your kids. But the things you can control, like how the hair falling out biz is gonna go down…well that’s something. We took those 2 cowlicks by the horn, shaved my head, and watched my hair go down the shower drain, one by one. Then I took the proverbial pencil out of my ear and shared the Veggie Tales “Oh Wear is My Hairbrush” song on social media to set the narrative tone for the long, bald day/road before me. It was the weirdest thing, trying to figure out what to wear with bald.
I’d already warned my students that there was going to be an aerodynamic bald chick teaching the class after my mastectomy and once the chemo started doing its thing. When I walked in to my class that morning, I said to myself, “it’s just hair” …but never in a million years would I have expected to walk in and see my entire class wearing bandanas in support of my new mask. Matt & Mikeyy had given my class the heads up.
The thing about the mask of being bald, was that it was the biggest reveal of all that I was super sick. But it also hid the fact that the chemo was actually doing its thing to make me better. Even though I looked and felt like and wondered if I was dying a lot during this act…I was actually on the way to getting better. And actually, was better than I was when those dirty blonde cowlicks, were masquerading and mooing about like they owned the pasture.
Act 6: I graduated cancer, chemo, and homeschooling all around the same time. My hair started growing back. I’d spent a lot of time wondering and hoping and dreaming for those chemo curls so many cancer patients get. Nope. I got these spikey spikes. First they came back super soft, and it looked like somebody had shaken salt and pepper on my head. I didn’t mind. It’s not just hair. It was HAIR. Plus, since it was so soft, my kids couldn’t help themselves from petting me every single time they walked by me. For me, this was the best consolation prize EVER for having had to wear that mask. I retired my red pencil and replaced it with a trusty No. 2 to start writing a book about that cancer story, and also the next chapter of my life. At some point my hair turned brown and I realized I didn’t really recognize myself as a brunette. My kids are aka the redheads so my daughter suggested I join the ginger party. “It’s just hair,” I thought. “So why not?” That mask didn’t really feel like me either, but it was super fun being one of the redheads with my kids for a little while. The first thing Amanda said when she saw me as a redhead was that all the freckles on my shoulders FINALLY MAKE SENSE. That revelation and especially the smile on her face was so. Worth. The. risk.
Act 7: Post cancer, my hair and this pencil seem to have taken on a life of their own. Not long after the red, I met this little cancer fighter named Maya the Magnificent who was in the hospital 100 days following a second bone marrow transplant. I don’t even know how it happened, but we were making silly videos back and forth and somewhere in the mix I ended up letting her choose the color of my hair and I kinda got hooked. Quite accidentally, it has become a thing people identify me by. But I don’t mind. It’s just hair.Whereas my red hair made my freckles make sense to Amanda, THIS, this crazy hair and this zebra pencil and these tattoos and this aerodynamically enhanced me aka the literal walking billboard of a life I am so lucky to get to not just lead but LIVE makes sense to me.
The poet Mary Oliver wrote, “What are you going to do with your one wild and precious life?” THIS. The reveal of this pencil is that I’m a writer. And I’m always taking notes and this is where I can usually find a pencil except when I forget to take it out before I run, shower, or go to bed. The reveal of this crazy hair is that I have a little mini me of a cancer warrior sister who likes to choose crazy colors for me and making her smile makes me happy. The hide is what’s underneath the crazy colors of this cancer activist. The personal scars from facing my own mortality. The grief from losing so many friends to the disease that tried to take me down. The guilt from being so damn lucky to still be here. The pressure to not waste a second, to try and make it worth it that I am still here. It’s a precarious balancing act.
Act 8: a few years ago I was at a cancer event at a bar with some friends who all followed me in cancer and who I was able to help out a little during their own journeys. This is the zone for me. My mask was on. I was on. And then I got a text that another friend who was a year ahead of me in the same kind of cancer and same treatment that was my silver bullet…but as it’s a 50-50 thing whether or not it’s gonna work, it unfortunately didn’t work on her… and the text I got said she now had 18 tumors in her brain. She had 2 very young children who were going to miss their mama growing up. I am still trying to figure out how to deal with that kinda bad news when I get it, cuz I get it way too often in my line of life. But that night, I just pulled the mask tighter, covering the grief underneath, lifted a glass and a prayer or two or maybe it was 3 glasses but I lost count…and as sad and mad and bad as I felt inside I made merry with my friends outside. We closed the bar and then I got in my car to drive home.
Luckily, there was a very savvy policeman who was sitting just outside the parking lot on the lookout for just such an occasion. The thing is, I knew there was usually a policeman waiting there after the bar closed cuz I’d heard a number of stories about it in the bar that night. But I forgot until I saw the blue lights in my rear-view mirror pretty much the second I pulled out of the lot. The other thing I forgot was that one of the stories was about another friend who had been pulled over in this very spot on a similar night to the one I’d been having, after her child got a bad diagnosis and she had immediately broken down crying and told the officer what happened. I’m not excusing driving under the influence in any shape or manner, but the thing is she received mercy and all I know is thank God for mercy, and that no-one got hurt, that she got a ride home, and that her child is in remission.
In my case I didn’t even think to play the cancer card. It was hidden underneath my mask and blinded by those blue lights. And really the only thing on my mind was walking that line. And that I wish I would have peed before I left the bar. I was legally over the limit. But the truth is, I can barely walk a straight line when I’m sober if somebody’s watching me cuz I’m super shy and I forget if I’m on left or right or left …and things can get super awkward. And trying to walk a straight line while doing the potty dance. Not. Gonna. happen. At which point I was handcuffed. Besides wishing I would’ve let down my mask for a second that night to pick up the phone and call a cab, this is the moment I wish I would have played the CANCER CARD that I’ve been carrying around since august 20, 2008, and have hardly ever used.
The thing is, my arms don’t go back like that ever since my breasts were amputated. I still don’t know how the officer got them together to handcuff me. But he did …and it hurt like hell. Which is pretty much what I felt like I deserved in that moment. Add some orange scrubs and grow my hair out again… and maybe #iampiper.
And I still don’t know how I managed to climb in the back seat of that police car with my hands cuffed behind me, and my arms coming out of their sockets, while trying to hold my bladder. All I know is something had to give a little… and something did.
Not my finest moment. But a moment, in my life. Just a moment, in my life, thank God. But a moment that was a diving board to all the other moments I’ve been given since. Each one a gift. Even the hard ones.
But that particular one stripped me down, not unlike cancer and chemo did. It taught me a lot about the masks I wear. The things they reveal and the things they hide.
It may be a literal mask, or the shirt off somebody’s back, or a bald head and shaved eyebrows, or it may be just some crazy colored hair and a pencil in the ear …but then again, it’s never just a mask, or the shirt off somebody’s back, or a bald head and shaved eyebrows, or just hair and a pencil.
Joules Evans is occasionally radioactive with a chance of superpowers. She uses them to fight cancer. She is also a writer. And a photographer. She blogs at www.joulesevans.com, posts neat pictures on instagram, and likes to tweet. Her book, Shaken, Not Stirred…A Chemo Cocktail, is available in paperback and as an e-book.