Receiving wild flowers in a spaghetti can is not something a girl forgets, especially when they arrive with bacon, wrapped old-school style by the butcher.
I was staying at a B & B in small-town Quebec when I heard the door knock. Checking that I was presentable, I put on my mask and opened it.
A thin, sun-hardened arm reached out and passed me the flowers. They had clearly been arranged with care, not simply tossed in the can.
“These are so beautiful, thank you, I-“
The other thin, sun-hardened arm reached out and passed me a package wrapped in brown paper.
“It’s for your breakfast with your friend. You’re going to visit her today, right? It’s bacon.”
Wearing a black kaftan, hair up in a bun, mask on, I stood holding the flowers and bacon. The moment felt surreal and for a second I felt like an actress in a scene from a quirky indie film.
Standing in front of me was the man I had dated when I was just twenty-one years old. Now, thirty years later, he stood before me with these sweet offerings.
I had traveled to rural Quebec for a late summer visit with one of my dearest girlfriends. Realizing my old boyfriend lived nearby, I had reached out to him thinking it would be nice to have a coffee and catch up. But that’s not quite what happened…
I ended up sitting on a lawn chair, in a field behind a workshop, drinking wine from a dirty mason jar. An alarming-looking fire in a metal barrel and a giant pirate’s flag were the only decor. Joining us were his ex brother-in-law and a fast-talking man wearing a straw fedora.
At various points in the evening the guys took turns urinating outside.
“If you need to go pee you can just do it out here, don’t worry, we won’t look and you’ll be safe. I’ll protect you,” said my ex.
Wait what? Peeing outside? What is happening?
On the walk over to his artist meets Hells’ Angels living quarters, I had struggled to connect with the man I once knew. He had a hard time making eye contact, was fidgety and clearly drunk.
I learned he had a grown daughter whom he deeply loved. That he knew how to survive in the wilderness (yikes, why?) and had spent time in Ireland. He’d also worked for years on large ships and loved to write poetry. That’s what I got, just a broad outline. But there were details. The details were in the scent he gave off: a blend of grief and complete despair.
“You know me. I’ve been trying to kill myself for years,” he said casually, just like someone might say, “you know me, I love ice cream.”
His pain completely overwhelmed me. I felt like any second it might swallow me up whole. Part of me wanted to run – fast – away from the field. But I also knew that his pain deserved to be seen, his pain deserved to be acknowledged. And so I sat in the field, drinking wine from a dirty mason jar and bore witness to it.
Later that night, alone at my B & B, I was overcome with sorrow. It shattered my twenty-one year old’s heart to see him so broken. I remembered him being wild and troubled when we dated, but also kind and romantic. One time he surprised me at the bus station: I was returning from visiting a friend and there he was, hands in his pockets, staring at the windows trying to locate me, his eyes lighting up when he saw me. I distinctly remember thinking: “I can’t believe he’s here!” There were no cell phones or emojis back then, but if there were I would have texted my girlfriends: “OMG he’s waiting at the station for me!💖😍🤸♀️👏💕”
Being presented with flowers and bacon the morning after such a crushing evening was not something I was prepared for. But, the moment was tender and real and awkward and despite the sadness I felt it was also beautiful.
Back in the mid-1980’s if you were a victim of sexual violence you hid it behind your stacked rubber Madonna bracelets and teased bangs. No one talked about it.
As a teenager in that era sex was a fraught issue for me. AIDS was front and centre in the 80’s making it scary. Also, my mother was a recovering Catholic, her internalized shame about sexuality passed down to me like a piece of heirloom jewelry.
When I was raped in high school I was still a virgin. I told no one about the assault and when my attacker gossiped that “he’d slept with me,” I brushed it off like it was no big deal.
The trauma quickly morphed into a skilled thief, stealing years of my life.
I didn’t have sex with anyone for the rest of high school. In my early twenties came a brief stage of boyfriends whom I slept with. The men were not worthy of me, but at the time they were all I felt I deserved. My broken psyche did not like what she was seeing though:
“You’re dating total losers, you’re on a precarious path!” she screamed.
Like the Goddess Artemis, my psyche was my protector. But since she was broken she didn’t know how to best take care of me. Fearing for my safety, she went a bit nuts and shut me down completely.
“No men, no dating, no sex!” she yelled.
So I spent 3/4 of my twenties and the first few years of my thirties single. I was like a flower that had been planted, started growing and then just before it could blossom a crazy gardener came along and put a giant terracotta pot on top of it – killing it.
Of course there is absolutely nothing wrong with being single, but being single because of unresolved trauma is very different.
The trauma thief stole my entire early adulthood. Years meant for learning about myself and relationships. For making mistakes and exploring my sexuality. For learning how to trust my instincts and stand up for myself. For dating wannabe poets and having affairs with much older lovers. But I was completely Shut Down, so I lost an entire decade. Pouf!
I spent part of that decade in Austin, a city I loved. I made beautiful friendships and had a great job. But I spent most nights alone. No cute Austin musicians or Texas cowboys for me.
I still grieve for those lost years. Looking at photos of myself from that time I see such a lovely, lonely girl. Though I’m not a big believer in destiny, I do believe that had I seen a therapist during those years I would have stayed in Austin – that it actually was my destiny to stay there. I can totally see myself married, with a grown child, still living in Texas and fighting the Handmaid’s Tale tyranny of Governor Greg Abbott.
Since then I have had the luxury of being able to work with a couple of excellent therapists, but there will forever be a little nest of grief inside of me. I envision it like a small bird’s nest, but with some glittery grass, for even in my grief there is sparkle. There are no birds or eggs in the nest. It is empty, but pretty and it lives in my throat.
(In the ancient Indian text the Vedas, the throat chakra is associated with the ability to speak your personal truth.)
When I was a child I used to make snow angels in our backyard with my youngest brother. Dressed in our bulky snowsuits, we would lie under the beautiful star-filled sky and move our arms and legs in rhythm. We would remain lying down and then just talk. I remember telling him all about the planets one time because I was obsessed with Saturn’s rings. Eventually we would get too cold, or our mom would call us inside, but before leaving we would admire our angels.
Now, this same brother thinks he is an angel, an actual angel. And not just any angel, but Archangel Michael, the only angel who is mentioned by name in the Bible, the Quran and the Torah. My brother told me this about two months ago when we were sitting outside on a patio on an unseasonably warm day. I was drinking wine and he was having a beer. I asked him what it meant to be Archangel Michael and he replied that he could create miracles.
I’ve been dealing with my brother’s mental illness for many years now and I sometimes use humor to cope. So in my mind I thought:
“Fabulous! If you can create miracles then can you please start by eradicating Covid, (or as he calls it, “the plague”) and then next can you please cure me of Peritoneal Mesothelioma?“
Instead I listened to him, nodding my head and I ordered a second glasss of wine.
In some ways my brother is lucky. He lives in a nice apartment on a nice street and he has enough money to live comfortably. My parents supplement his disability – disability payments put you living at the poverty line by the way. And my mom buys him new winter coats and boots and running shoes when he needs them. He needs new running shoes fairly often because he self-medicates by exercising obsessively. Dangerously long jogs and bike rides in the middle of the night. He keeps vampire hours staying up late, then waking at dinnertime.
He will not see a doctor, let alone a psychiatrist. Based on years of spending time with him and research, I’m guessing he’s on the schizophrenia spectrum, the autism spectrum and has OCD. Of course I could easily be 100% wrong.
Had he been born into a different kind of family, he could easily be homeless. One time I saw him walking down the street having a very animated conversation with himself and I thanked God for bringing him to our family where he is protected.
This holiday season, like so many others, I am burnt out. I have nothing left to give or say. I just want to take a Xanax, curl up under a blanket and listen to old Kate Bush songs. I don’t want to decorate or bake or cook or make conversation. But oh what I would give to make snow angels with my brother again. To have him back for just one night.
I know it’s not a healthy breakfast, but I don’t care. I want a croissant or pain au chocolat, with a strong cup of coffee.
I don’t need a giant Costco bag of apples, just one perfect crisp McIntosh will do.
I want to eat eggs from the happiest of chickens, the ones who run free on a family-run farm. Yes they are more expensive, but you can taste their joy.
My afternoon snack is a piece of cake with frosting covered in sprinkles. It’s a silly cake, the kind you might make for a six year old’s birthday, but it’s what I want and it makes me smile. Yes I will crash from the sugar high and need to nap like a toddler, but it’s worth it.
I want to cook dinner like my Aunt showed me, the one who lived in Paris. Cook anything in a cast iron pan with butter and white wine and it will be like dining on the Rue Mouffetard.
Speaking of wine, I want to drink mine from mis-matched vintage glasses, the ones that are etched with swirls and trimmed in gold. And I want to drink it every night.
Before sleeping I want to massage my face with a heavy rose-scented cream. Maybe it won’t take away my wrinkles, but they will enjoy the lovely rose scent and I will too.
I will read a fashion magazine in bed. Not a book about something important. Instead I will look at beautiful clothing designed by artists who paint our bodies with fabric instead of painting canvas. This is important to me and it will help me dream of magical adventures, where I laugh and twirl and love myself and throw glitter down on everyone sleeping, so that when they wake, they exclaim, “whatever happened last night? Why is there a rainbow of glitter in our bed?”
This is what I want. I don’t care if it seems fanciful or silly or not what I should be doing. For the only thing I should be doing is living as my truest self. The doctors said I would be dead by now, that my cancer would devour me, but somehow I am still here. A mystery to them. So while I’m still here, I want it all. And I want it covered in gold sparkles.
“I’m going to marry him,” I told my girlfriends. He smelled like home. When he hugged me I’d almost fainted from the sheer intensity of his scent. He smelled like the kind of love that inspires poets and songwriters. But God is a trickster. He created smell to mess with us. “She thinks she’s going to marry him because he smells like home!” God said laughing. “I’m just fucking with you, get it together girl, he’s not your future husband!” God tossed a handful of popcorn in his mouth and continued watching his reality show.
The following is a true story. It’s part of a new series I’m doing of 100 word real life stories.
My secret crush was standing in front of me at the toy store where I worked. He handed me a fortune cookie and left. Inside was his number. It was 1987, so I had to wait until I got home to call him; we spoke for hours. I told my parents that the boy I loved wanted me, so I would not be going away to The University of Toronto; they refused to comply. Thus began weeks of me listening to Bryan Ferry’s “Slave To Love” while sobbing. At school I dated, ate pizza with magic mushrooms and dreamed of him.
“You’ll feel like you were hit by a truck after the operation.”
“The surgery will take 9-12 hours, including administering hot chemo into your abdomen.”
“Do you think you’ll be able to save my reproductive system?”
“We’ll try, but it’s likely that it will all have to come out.”
“We will be giving you an ileostomy and it could end up being permanent. Be prepared for that.”
“Oh my God.”
“I know it’s a lot to digest. If you have any other questions please let me know. I’ll see you on the 18th.”
“Thank you Dr. Govindajan.”
I left the hospital in a daze, walking aimlessly for several blocks. A pub down the street caught my eye and I went in and grabbed a booth at the back. It was only 11:00 AM but I ordered a glass of wine. I also ordered a grilled cheese so I didn’t look like a sad alcoholic. I opened my notebook where I’d had written down everything my oncologist had just told me.
“Here’s your wine sweetie, tough morning?”
“Ya. I have cancer and I’m getting operated on in two weeks.”
“Oh I’m so sorry. My sister had cancer and she’s fine now. You’ll be okay too, don’t worry.”
“Thank you, that’s nice of you to say.”
Actually I’m probably not going to be okay because my cancer is very rare and there’s no cure and there’s not much research on it.
I started making a list of things I would need for the hospital: facial wipes, lip balm, reading glasses, secret stash of Xanax, cotton pillow case because the ones in hospitals are gross polyester, mirror, phone charger…
The grilled cheese arrived and looked delicious. I took a bite and then another. On my third bite I got that familiar feeling again, the one that had been plaguing me since I was first diagnosed with Malignant Peritoneal Mesothelioma.
My throat is closing. I can’t breathe. I’m dying. Please someone help me.
I pushed the grilled cheese aside and grabbed my pills. As I tried to swallow one it felt like there was no room for it to go down.
Oh My God the cheese has coated my throat and now I’m choking.
Thankfully the Xanax kicked in quickly and I felt like I could breathe again, but I couldn’t eat another bite. I had already lost ten pounds and I wanted to gain weight before going into the hospital, but food had become my enemy.
After the pub I headed to a nearby department store. In the shoe department I chatted with a friendly salesperson about our favorite fall fashion trends. I bought three pairs: tall wedge booties and fringed mid-calf cowboy-ish boots, plus a cool pair of men’s style oxfords.
Where are you wearing these? You’ll be dead soon.
In the cab home I leaned back and shut my eyes. Wait, so I’m going to go through menopause all at once? Like – BAM! – I’m a crone now? Is that how it works? Why? Why is this happening?
Do I even want this operation? Like, what’s the point? With this disease I’m basically fucked, so why go through all of this? And why the hell can’t they save my female bits? Is it bececause I’m 46 and they figure I don’t need them anymore? I do need them and I want them God Damn it.
And, side note, why can’t I have a normal cancer like breast cancer? I mean Mesothelioma? Caused by exposure to asbestos as a child? What the actual fuck?
Having only been dating my boyfriend for one year I felt my diagnosis and everything it involved was just too much pressure on us. We should break up now before we became more attached. He didn’t sign up for menopause and an ileostomy bag and God knows what other complications, plus a high probability of me dying soon.
I wondered about the whole dying with dignity thing. Oregon had recently made it legal for individuals to choose to end their lives when they were sick and suffering and since I was an American Citizen I reasoned I could move there. But what if you wanted to end your life before you got to the sick and suffering part. Like kind of preemptively end your life? That should be allowed too.
I could go the straight suicide route. I had just filled my prescription for Xanax and it was surely enough to kill me. The problem is I would have to do it immediately before I had another panic attack. The more panic attacks I had the more Xanax I used up, which would not leave me with enough pills to end my life.
Back at home I continued thinking through my Xanax plan. One of the many issues with it was that knowing me I would have a panic attack while trying to swallow all the pills.
A panic attack while trying to kill myself. Ridiculous.
The other complication with my plan was that it would devastate my family, boyfriend and close friends. I didn’t want to hurt them, but I also didn’t want to be forced to live through this nightmare. Suddenly I felt resentful of them. Now, because of them, I was going to have to endure a horrendous surgery with some weird hot chemo poured into my stomach, making my abdomen a poisonous soup. Then I would wake up sweating from hot flashes with a stoma spewing waste into a bag attached to my tummy.
Not fucking fair!
Within minutes the rage I felt turned to sadness, but I couldn’t cry. I couldn’t scream or cry or do anything to get the emotions out. They were all trapped in my chest. I lay in bed for an hour not moving, my 100 pound dog Leroy lay with me, his giant head on my stomach.
I could not leave Leroy that’s for sure. I had dragged him with me all the way from Los Angeles to Toronto and he considered himself my husband. Though he tolerated my boyfriend, he would have preferred to have me all back to himself. During my marriage Leroy had saved me. Though I had rescued him, he had emotionally rescued me and I was forever grateful.
It was time for Leroy’s mid-day walk. I put on his fall sweater – blue hand knit with a giant red crab design – and we went out in the sunny, cool air. We ambled along and he scored half a croissant out of a bush. Having previously lived on the streets of LA, he was adept at sourcing food.
“Do you know how much I love you?” I asked him. I kissed his beautiful brindled head as he licked the last of the buttery croisssant off his lips.
Three women were walking towards us on the opposite sidewalk. They were dressed in black abayas, but the woman in the middle was wearing the most beautiful sparkly one – it looked like silver metallic sparkly stars. I waved to them and they waved back, the one wearing the sparkles flashing me the peace sign.
In that moment I realized that I would go through with the wretched operation and scary tummy chemo soup.
I didn’t want to, but I would.
I hated my lack of options, but I would.
I was mad as hell at God and the Universe, but I would.
I didn’t know if my relationship could survive it, but I would.
I had no idea how life could possibly go on after this all, but I would.
I would because there was a woman wearing a sparkly metallic abaya flashing me the peace sign and for some reason I took that as a sign. I would.
“Did you have a nice time with your father? I like your hair that way, you look pretty.”
“You’re not supposed to give me compliments about my looks, remember? That’s old-school parenting.”
For the love of God.
“Dad took me to that vintage store I’ve been wanting to check out and bought me some rad stuff. Then we went out to lunch with Marie, I like her, she’s cool.”
Who the fuck is Marie?
“Wash those clothes, you never know what could be on them.”
“You’re kidding, right? They’re already clean mom. Anyway, Marie is getting me a pair of jeans from the denim company she works for. Their jeans are made in a really nice, eco-friendly factory right here in LA, not like a sweatshop in Bangladesh.”
“I bet they are. I bet their workers have health insurance and paid sick days and proper lunch breaks and good air conditioning in their work rooms.”
“Mom, chill. Marie is cool. Be happy Dad is not dating a 21 year old actress hyphenate, because he totally could be. All my friends say he’s a silver fox.”
A silver fucking fox.
“We’re having vegetarian lasagna tonight. Does that meet your current eating standards?”
“I actually started eating meat again this weekend.”
“Marie said I don’t have the right blood type to be vegetarian. She said that to maximize my health and well-being I should be eating free range chicken, grass-fed beef and non-farmed salmon five times a week. But lasagna is fine too.”
“Okay then, well I’m going to maximize my health by drinking a glass of wine right now. Go do your homework.”
“I’m not ten. You don’t need to tell me to do my homework. And by the way, I’m getting like almost straight A’s, so maybe just take it down a notch Laurie.”
She did not just call me Laurie. Breathe in, breathe out. Breathe in, breathe out.
Jessie went to her bedroom, grabbing a bag of caramel popcorn off the kitchen counter on her way.
Laurie popped the lasagna in the oven then poured herself a glass of Chardonnay. In the livingroom she watched an old episode of Scandal for the tenth time. There was something soothing about watching the show over and over again. Olivia Pope wouldn’t be dealing with a ridiculous teenager and someone named Marie. Olivia Pope would “handle it,” and then go have sex with Jake, or the President, or both.
Maximize her health and well-being. Go fuck yourself Marie. How is it that Mike is introducing Jessie to the woman he’s dating? Does that mean he’s in a serious relationship?”
Laurie texted him: “Hi. Jessie had a nice time with you and Marie. R u two in a serious relationship? Pls keep me in the loop. Thx.”
Jessie came to dinner wearing a black Joy Division t-shirt.
“So that’s one of the vintage pieces your dad bought you? Do you know the lead singer committed suicide? There’s a documentary about the band if you’re interested. He suffered from horrible depression.”
“Good lasagna mom,” said Jessie, ignoring her mom’s comments.
“Thanks, I’m glad you approve.”
“Mom, I don’t want you to freak out or anything, but I got the feeling that dad and Marie are really a thing. Like really together. I’m just giving you a head’s up.”
“That’s sweet of you, but don’t worry about me, I’m fine. I want your father to be happy – I’m glad he’s met someone.”
Wow. That was fast Mike. We’ve been divorced for less than nine months and you’re already in a serious relationship.
Later that evening Mike texted back:
“Hi. Yes, Marie and I are together, we’ve been dating exclusively for five months, I was going to tell you. She wants us all to get together for dinner. Can you do Friday night? I’ll have my assistant book us a table. Thx.”
Five months? Dinner together?
After throwing in a load of laundry Laurie went out by the pool to smoke a cigarette from her secret stash.
“Sounds great. Looking forward to it!” she texted back to him.
“Why did you say sounds great and looking forward to it?! You cannot go to that dinner alone, we need to find you a date,” said her oldest friend Molly the next day.
“No, that would make it worse. It would make me seem desperate and sad and I’m not desperate and sad, I just wasn’t prepared for a ‘Marie’ yet” answered Laurie, checking on the non-farmed salmon.
“Gotta go. Jessie just got home and tonight she’s bringing a friend with her. This morning she actually told me what to wear and asked me to “act normal,” at dinner. Love you.”
“Oh Lordy. Love you too girl.”
Laurie had followed her daughter’s instructions and worn her high-waisted jeans with her hippie blouse tucked in and her large gold hoops. She had even put on mascara and lip gloss. Last time Jessie had a friend over she had been more than just a friend, so she was expecting the same this time.
“Hi mom, we’re home and I brought an extra guest!” yelled Jessie from the hallway.
“All good!” Laurie answered as she set another place and added more salad to the bowl.
As she put out an assortment of drinks for the kids to choose from, she poured herself a glass of wine.
“I’ll take one of those too if you don’t mind,” said a deep voice.
Who. The. Fuck. Is. That?
The most handsome, swoon-worthy man was standing in her kitchen doorway. What was her daughter up to? She wanted to strangle her, kind of.
“I’m Daniel, Emily’s father. Sorry the girls sprung this on you. They’re such operators.”
Laurie handed him a glass of wine, glad that she had put on mascara and lip gloss.
“Not a problem. I should have known something was up when Jessie told me what to wear for dinner,” she said laughing.”
“Can I do anything to help?” Daniel asked.
“Thanks but everything’s done. Let’s go outside for a few minutes and relax.”
From the cupboard Laurie grabbed a bag of Salt N’ Vinegar chips:
“These go really well with wine.”
“I like the unicorn pool floatie,” Daniel said.
“Me too. Jessie is mortified by it, but she’s mortified by most of what I do and say, so you know…” said Laurie crunching on a chip.
“God these chips are good,” said Daniel with salt stuck to his upper lip.
Those lips. Wow. Stop staring Laurie, you freak.
“Is it wrong to say I hate teenagers? I just want to fast forward to the college years or whatever this generation is going to do instead of college. I can’t take it.”
“I know, it’s brutal. Jessie has started referring to me as Laurie.”
Daniel laughed hard, almost spitting out his wine.
The laughter and chatter continued until the oven alarm went off and they went inside for dinner.
“So girls, how was school today?” asked Laurie.
“The usual,” answered Jessie.
“I love the usual,” said Daniel, digging into his salad.
Jessie took a selfie of Emily and her.
“No phones at the table,” Laurie said. “Also, are you two a couple?” She could feel Daniel hiding his smile.
“No. We’re trying to make Emily’s ex-girlfriend, Sarah, jealous” said Jessie.
“Got it. Well hope it works.”
“Are you guys ready for your science test tomorrow?”
“Of course we are Dad,” answered Emily, rolling her eyes.
“Just two more years,” whispered Laurie to Daniel. He tilted his head and smiled at her.
Laurie caught Jessie sneaking a photo of her and Daniel.
“What are you doing? I told you, no phones at the dinner table. Stop it already.”
After dinner Daniel and Laurie cleaned up and continued chatting:
“Thanks again for dinner, it was delicious. And sorry about the ambush…”
“It was my pleasure. I had a lovely time.”
“I would love to bring you out to dinner, no teenagers, just us. Are you free Saturday?”
I’m free right now. Kiss me. Please kiss me.
“I would love that.”
Later that evening as Laurie was finishing some editing work, Jessie stopped by her office. Leaning against her mother’s desk with a popsicle in her mouth, she said:
“Did you like Emily’s dad? Isn’t he cute? I thought he was your type.”
“You are quite the little trickster,” said Laurie, grabbing Jessie into a playful bear hug.
“I knew you would like him,” Jessie said, giggling like a little girl. “I just knew it!”
“You are an amazing young woman, you know that? Don’t ever forget it” said Laurie, kissing the top of her head.
Friday night, at Fia in Santa Monica, Laurie and Jessie met Mike and Marie for dinner. Marie had that effortlessly slouchy-chic look: a satin slip dress under a belter cardigan and vaguely western ankle-boots.
“It’s a pleasure to finally meet you,” Marie said as she extended her hand.
“Likewise,” answered Laurie smiling.
“I ordered you a Chardonnay,” Mike said kissing her cheek.
A tray of drinks and appetizers arrived and they all raised their glasses.
“To getting to know each other,” Marie exclaimed.
They clinked glasses and Laurie took a long sip.
“Dad, I wanna show you something,” Jessie leaned into him so he could better see her phone screen.
“So, I hear you work for an eco-friendly denim company, that sounds really interesting.”
“It is. It kind of combines my two passions: fashion and the environment.”
“Who’s this?” Mike asked Laurie as he was looking at Jessie’s photos.
Laurie looked as Jessie flipped the screen to show her.
“Oh that’s Daniel, Emily’s father. They were over for dinner the other night.”
“Mom is going on a date with him tomorrow night,” said Jessie proudly.
“An ileostomy is a surgery that makes a temporary or permanent opening called a stoma. A stoma is a pathway from the lowest part of the small intestine, called the “ileum,” to the outside of your abdomen. This helps solid waste and gas exit the body without passing through the colon or the rectum.”
Does this description sound both gross and a little X-Files-ish to you?👽 It does to me too. It’s been five years since my cancer surgeries, (for Peritoneal Mesothelioma) and I still have a tough time accepting my stoma. I know today’s ethos is all about celebrating and loving your body the way it is, but I truly struggle to do that.
Yet, since there’s nothing I can do to change the situation, I gave my stoma a name: Ron. Ron is actually a beautiful shade of red. If Ron were a lipstick he would be Sephora’s Best Seller.💄 He lives two inches below my belly button and three inches to the right of it. He’s smooth and shiny and he’s shaped like a tiny mound.
Ron moves too – wtf? Sometimes he’s smaller and almost flush with my tummy, other times he enjoys showing off and gets bigger and longer. The first time he pulled that trick I was terrified and yelled out to my partner to bring me a measuring tape so I could measure Ron in the shower.🤣 Mostly though he’s about the size of a small tootsie pop – remember those?
Ron is Celebrity-style high-maintenance. He requires a special 3-piece outfit on him at all times, which includes a small beige bag 👜 to collect liquid-y waste. I empty the waste or, “output,” into the toilet, ten or more times per day.
Ron is extremely picky about food. I used to eat a mostly plant-based diet, but Ron let me know – in dramatic and painful ways – that eating vegan was not an option. Most fruits and vegetables give him trouble, particularly their skins.🍅 Nuts, seeds, legumes and beans are also difficult for him. There is literally almost nothing in a plant-based diet that he likes except green juice, smoothies and creamy vegetable soups.
What does Ron like to eat? Basically he loves hospital food. Give him a piece of plain chicken with mashed potatoes and a tiny cup of ice cream 🍨 and he’s the happiest little red intestine mound you’ve ever met. But if you dare try to fake Ron out with foods he doesn’t approve of he will make you suffer.
Once, in a moment of weakness and right before a Flaming Lips concert, I decided to eat half a grapefruit – one of my favorite fruits. I chewed it carefully, (with ileostomies you have to chew everything a million times), but I forgot that grapefruits are encased in those little linings/skins. Well, halfway through the concert Ron lost his fucking mind!🤯 He erupted with thick paste, resulting in his 3-piece outfit peeling off my skin, causing gross mayhem.💩
I must say though, if ever there were a perfect concert to have a stoma accident, it would be The Flaming Lips. Everyone was high and dancing, there were unicorns 🦄 and I think the singer was in a giant clear ball, so no one noticed me racing to the bathroom.
I always travel with supplies because you just never know. Luckily the bathroom had great speakers, so as I cleaned myself up and put on a fresh new outfit for Ron, I was still able to enjoy the concert. Though I can laugh about it now, accidents are stressful and they make me feel vulnerable. In all honesty, I am never fully relaxed when I’m out and that is emotionally exhausting.
Body Image & Fashion:
Most people I know have a favorite body part that they often highlight when they dress. Maybe they have legs for days, a long graceful neck, or defined yoga arms…I used to like my mid-section. I didn’t wear crop tops, but I liked high-waisted, 70’s style wide-leg jeans with a top that hit the waistband. I wore lots of other styles too, I enjoy using clothing as a form of creative self-expression. Now I’m no longer able to wear anything fitted.
My stomach is split in two sections, separated by a 12 inch scar (the scar doesn’t bother me). The left side of my tummy is its normal self, but due to surgery, my right side is now slightly rounded, as if it just binge-ate an entire baguette. 🥖 I hate it. While I don’t spend my days obsessing about it, I do sometimes feel sad. Also, I’m sick of wearing long, flow-y tops.🤦🏻♀️
Ultimately though I’m very grateful to Ron.🙏 Because Ron, along with my incredible surgeon & HIPEC & lots of luck, have allowed me the privilege of living much longer than anyone expected.
A final few ileostomy facts🤓 :
– There is no smell.👃🏽 No one will ever smell your stoma or bag.
– Ileostomy supplies are extremely expensive.💰
– You can swim and play any sports you want.🏄🏻♀️ There are accessories to help keep the bag secure.
– Partial bowel blockages are fairly common & scary. I’ve had 6 of them in the past 8 months, so my Dr. is investigating.🔍
So that’s what it’s like living with an ileostomy, for me. It’s Ron and I together for as long as I get to live.👫
Ron’s 3-piece outfit:
Stretchy “donut,” it goes around Ron/stoma to help protect the stomach’s skin from rashes.
The “flange” (redheaded Lady is standing in for Ron/stoma 🤣) This adhesive flange goes over the stoma & over the donut and sticks to your tummy. (You cut the centre to fit your stoma)
So maybe there were a few red flags. Like a tree’s worth of red flags. Like picture a cherry tree, but instead of beautiful blossoms there were 500 glittery red flags. But you know, our insecurities our powerful mutherfuckers and sometimes they run the show. So I got engaged.
At the time I was working for a fashion designer and she and the CEO toasted my engagement with champagne, the CEO said:
“Well obviously she’s going to design your dress.”
No. No. No. I had planned on finding and wearing a vintage dress. Plus, I was friends with the designer and I knew she was stressed, the last thing she needed was the pressure of making me a dress. But I said,
“That would be amazing, thank you!” because at thirty-six yrs old I still had trouble asserting myself – sad but true.
The fittings were difficult, sprinkled with moments of laughter. She was my friend and boss, which is a complex dynamic. From the beginning of the process I felt unable to speak my mind, hold my ground or say “no.” Though I found it hard to breathe in the dress, like really hard, she told me, “that’s how it’s supposed to fit” and I stayed silent. It was bound to end badly and it was all my fault.
Hop a plane with me now would you? As we fly from Los Angeles CA to Ottawa Ontario, Canada’s lovely capital city where I grew up and where the wedding dress debacle continues…
At the hotel I came face-to-face with what I knew before but could not admit: the dress was beautiful but I did not feel good in it. I did not feel confident in it. I felt exposed. Plus, you know, I couldn’t breathe. It felt like I was wearing a beautiful nightgown, bias cut silk-satin gorgeousness. All the dress needed was a cocktail, a cigarette and a handsome lover. Walking down the aisle in it would feel like wearing haute couture lingerie. I had to buy a new dress and I had two days.
The hotel suggested a boutique where I found an antique-y vibe pouf dress. Was it what I imagined my wedding dress would look like? No. But then again I had never been the girl who dreamed of her wedding day and bridal gown. I had dreamed of getting a dog and and visiting Paris. But I felt confident in this dress, like I was wearing big pouf-y armour. And I could breathe. There was only one tiny problem, the dress was three sizes too big. It would have to be altered in 24 hrs. No pressure.
Meanwhile, in Red Flag Land, on the day of the epic alterations I found out my fiancee had lied about a major financial issue. I forget exactly what it was because I’ve worked hard to block it out, but it was something big enough that I clearly remember thinking:
“I could legitimately pull a Runaway Bride move here. Now is the time in the Rom-Com where the bride-to-be runs away with the help of her friends.” And my friends, who by the way are each pretty badass, would have 100% supported my decision. But I didn’t tell them. I was too busy worrying about all the relatives who had flown-in for the ceremony, for some it was their first time in Canada.
“I can’t cancel the wedding because it’s not fair to the guests,” is what I thought. Did I mention I was a chronic people pleaser? Emotionally it felt impossible to cancel the wedding, but had I possessed more self-love, more self-confidence, I would have apologized to the guests and walked away.
Wedding day involves a flurry of activity and frankly Xanax should be given out to everyone. Part of the flurry is getting hair and makeup done. Having not lived in Ottawa for a million years I didn’t know the scene, so when it came to choosing hair and makeup professionals mistakes were made. The result was a bridal look that aged me ten years, including heavy 80’s makeup and early 2000’s pin-straight Rachel from Friends hair.
On the balcony of the hotel my dad walked me down the aisle. He looked so handsome and somehow vulnerable too. What was he thinking? Had he seen all the red sparkly flags? After our vows and the breaking of the glass – “Mazal Tov!” – one of my favorite songs, The Cure’s “Friday I’m In Love,” played. I wasn’t in love, but it was Friday and I was now married. Dear God what had I done?
Despite the wreckage that my insecurities and I caused, everything worked out in the end. My former boss and I became even closer friends. My ex-husband and I are still in touch and keep each other up to date on major life stuff, like: “Did you get your Covid vaccination? Is your family alright? How’s your dog doing?”
I still struggle with standing up for myself, speaking my truth and saying “no.” But my insecurities no longer run my life. They may ride alongside me as I live my life, like a trail of bugs, but I swat them away when they come too close.