Regardless of how you feel about the holiday season — no matter if you celebrate Christmas, Hanukkah, Diwali, Mawlid, Bohdi Day, Yule, the Birthday of Guru Nanak, nothing or anything else — most people at least agree that we should be nice.
Every year I’ve set up an advent calendar for my daughter, even though I’m not a believer in the background of Christmas. Hey, even atheists love a good party. Plus, if the party has a lot of decorations, presents, food and niceness… come on now. I even made a magnetic fridge advent calendar after my grandma passed away as an homage to her, and told my daughter that Great-Grandma watched over her and gave her the treats. Well, she figured me out this year.
Rather than making 25 treats during a season already saturated by sugars, I thought about the stellar values my super awesome Grandma had, and how I could turn the calendar into something actually magical. So we sat down and I cut up 25 pieces of paper and asked my now seven year old daughter what we could do each day leading up to Santa that would be kind and nice, but not necessarily cost any or much money. Folks, she has come up with a brilliant list of Nice Things.
We folded up the papers and put them in a bag, shook it around then placed them in our advent calendar so each day would be a surprise. I will post the Nice Things we do each day on Twitter, Facebook, and Instagram with the tag #25NiceThings and then follow up with how it all turned out. I challenge you to follow along and do a Nice Thing with us! Or make your own Nice Things list and tag #25NiceThings so my daughter and I can follow you and have more ideas for next year. You don’t have to believe in any holiday or religion to want be nice and do Nice Things. You just have to be thoughtful. So be thoughtful with us this year. I have a good feeling about you.
Aside from your heart spontaneously combusting, there are a lot of other unpleasant things to do when your baby dies. As with any death planning, it’s gut wrenchingly awful and each step feels like twisting the dagger in deeper and deeper. In the North American customs that I’m used to, there are very little conventions to follow and lots of whispered stigmas around child deaths (rightly so, as they are the most sad). So that makes trying to find ways to honour your child’s existence very difficult. As my daughter never got to have a life, I wanted her death to be an expression of all the things I had hoped for her. I wanted to remember her with joy as well as sadness. I wanted my eldest and I to have some experiences with her. These are some suggestions that helped me, and maybe they’ll help you or someone you know.
Saddest walk to the park ever.
Have a baby funeral
When my baby was still born at 39.5 weeks, I knew I wanted to have a funeral. I didn’t know then, that a lot of people don’t have funerals for their babies, but I can imagine why you might not want to. I had spent the whole year making up her stroller kit and researching skateboard attachments for my daughter. Talking about how Rook and he would roll to school and we’d drop her off and roll her back at the end of the day. How we’d all go to the park, and throw snacks to the ducks on the lake. It was a vividly pictured story that I told us both over and over with great excitement. As our baby was in a surrogate in another State, we had lots to imagine together.
Friends floating lanterns into the lake.
Planning things makes me feel better. Planning nice things for my daughter makes me feel immeasurably better. So I planned a stroller parade from the house to the lake with all our baby owning friends and their kids, Rook and my daughter at the top of the line. Everyone was asked to wear bright colours and the kids all had faery wings and bubbles. A friend played guitar and sang as we paraded down the street.
I had created a eulogy about Rook’s likes and dislikes based on stories about my surrogate’s pregnancy. Her husband and daughters all told me about different foods she couldn’t eat (eggs were top — and my daughter and I found out we are intolerant to eggs recently) and the ones she loved (melons). How she was not a morning person, but liked to kick all night. My then-partner created a sci-fi tale of how her DNA gets found in space and she starts a rebellion uprising, which seemed on brand for our combined personalities.
Then we lit environmentally safe candles in biodegradable floating lanterns and set them on the lake while people thought about their wishes for Rook. We all sang you are my sunshine to her as her sole lullaby. Then head back to the house for drinking, Irish wake style. I had photos of myself, my then-partner and my daughter as infants on poster boards next to Rook, so people could imagine what she would have looked like.
Sweetest Tiny to never take a breath.
Bring your baby home
After embalming, your loved one is okay to be in your home for up to 72 hours. They can be home. They can be in their bed. You can go and see them all you’d like. You do not have to pay for a funeral home showing. The earlier you get them after death, the better however. My poor little girl took a while to travel from California and babies are mostly water, so they do not take as well to embalming as adults do. Their skin gets dark and they need a lot of makeup. I did not know this initially, but you may want to know before you make this choice. As our baby was never alive outside in the world, I wanted her to be in her crib and get to rock her in the same glider I rocked my daughter. Lots of cultures have their loved ones in their home and plenty of people do open casket funerals. This gave the family a lot of time with Rook to make peace and I’m glad we did it.
Take a family portrait
There is a lot of slack put on ‘younger people’ taking selfies at funerals. I don’t think it has the flippancy that is being put on the act. I’m a single mom and if I don’t selfie, then my daughter will have no memories of me existing in his childhood. If no one else is going to take the photo you want, then you selfie. If you want a reminder of how you felt, or what someone looked like after the life went out of them, then do that. It is literally not harming anyone. We would not have any family portraits if we didn’t take one after Rook died, and I have had two kids. I wanted a memory of all of us together. My daughter was thrilled to take shots with her sister and was only mad that Rook got to wear make-up and she did not get to. So, don’t harsh on people who do this. Just because it’s not *your* thing, doesn’t make it a *bad* thing.
Get creative with ashes
There are a lot of things you can do with ashes. There are little urn necklaces (my friend got me a rocket one for Rook), you can turn them into diamonds, they can be used to make glass art pieces, or hosted in teddy bears. You can even send your baby to space, which is one of the plans we have for some of Rook’s ashes. You can use ashes to plant in your home, or in pods meant for outside. You can also get them put into ink and have yourself tattoo’d. Both my then-partner and I got tattoos with Rook’s ashes in them. The rest have gone on piles of adventures with us, and have been sent to various friends and family. I like to think of each scattering of her ashes as a trip she’s gone on. Celebrating the life she didn’t get to have.
The end is not the end.
If grief ended within a certain amount of days post death, how great would that be? Alas, no such luck. But… that does give you a lot of time to process that grief and many opportunities to come back to it when you have more mental fortitude. Directly after your baby or child, or anyone’s death might not be when you have all the strength to have a funeral, make a scrap book, or blast their ashes into space. You give yourself space instead. When you’ve had a chance to regroup, you can always chose to do something to honour them in your own time. The loss is timely, the love endures.
Content warning: Photos of a deceased infant and grief.
Hands in the air, often on knees, glaring skyward, as if to rage against a deity or aliens (or whomever might be in charge of unfortunate events). That’s how our cinematic downtrodden are dealing with death and grief. Arms thrown back, chest open to the world, they scream, “NOOOOOOO!” They scream like this, because someone thought that’s what you do when you grieve. Then a bunch of other writers and directors thought that was cool and now it’s everywhere. Mostly it doesn’t happen that way, and just like anything we do that’s not reflected back at us in the media, we can feel bad about how we react. Sometimes, people think they are doing sad wrong and that’s upsetting. There is no wrong way to grieve.
Well, let’s add on a caveat that harming others is wrong (unless in self defence) and if you want to harm yourself, please tell someone and seek help. Those use cases aside, bereavement and other forms of grief are really a free for all to process your emotions and loss. You don’t see a lot of people crying in public, so it doesn’t seem okay to cry in public. The bereaved are like sci-fi mole people, hiding in the dark trying not to make other people upset by their totally normal emotions.
One year ago today I got a call from my surrogate’s husband. I had cervical cancer previously, went through IVF to get my eggs removed and created embryos with my then-partner. We had our top genetically approved embryo, a girl, implanted in a fabulous woman who impregnated like a champ. She was 39.5 weeks along when I got the call. I thought this was go-time, and I was going to fly like the wind to California from Seattle to pick up my little girl, Rook. I was having a playdate with a great friend and her kids and my daughter at the time.
“Erin, she went to the doctor for her check-up for the induction and the baby has no heart beat.” I felt like I had no heart beat. I didn’t really know what was happening. For a few minutes I wasn’t sure if she could still be saved and I was just trying not to react around my daughter. My friend saw my face figuratively peel off and land on the floor and crumple into dust. I managed to tell her in small gasps what had happened and she immediately offered to take my daughter to her house for the evening and feed her dinner. Once I had no Tinies as an audience, I began frantically calling my partner, my mother and because I’m a fairly open person on social media who had been live media-ing ‘all the things’ I posted that my baby had died. I bought a ticket online to go to California to meet my daughter, they were waiting for me to get there to induce my surrogate.
After all the house keeping of death was in order, I had my movie ‘no’. I did not throw my hands to the air. I did not say ‘no’. It felt more like an exorcism. Chest closing in on me, hard to breathe. Stomach clenched like a metal fist was punching me over and over in the gut. Churning a toxic sludge that if I kept it down, would consume me. So I threw up. Then, on the floor, crying and shaking, I started alternating yelling and whispering. I yelled, “Why? Why is this happening?” I yelled it to no one in particular. I just desperately wanted to understand how after all the struggles I had been through, that in an instant, my baby was dead. Then I just straight up rage screamed. For a long time. After I whispered, “Oh baby girl, my little baby girl… I hope it didn’t hurt.” Followed by a lot more rage screaming. I think that grief is a little too real for a lot of movies, but it’s normal and if it happens to you, you’re still okay.
Another great woman and friend saw my post on Facebook and came over to my house. She asked if I wanted her to come with me for Rook’s birth. After a bunch of, “No, it’s too expensive…” type comments, she got it out of me that I would appreciate the hell out of her company and booked herself on a flight. My partner got home, my mom was on the way from Canada to watch my daughter and my friends husband raced us to the airport to make our last minute flight. I had a bag packed with all the things I needed to retrieve my daughter, I had to unpack all the formula and diapers but left in some clothes for her.
Rook Nova Aria Caton - prettiest Tiny to never take a breath
The labour was a comedy of horrors. My poor surrogate, who was stoically waiting for me to fly in, was very tired, pregnant with a still born and trying to be a rock for me. Her family was all there and everyone was attempting their nicest selves. We all cracked jokes, because that’s another very normal thing a lot of people do when they are sad. Hours and hours they tried to induce her with various means. As any woman who has gone through induction before knows, stress and fatigue do not help the situation and there was no way to get her body to go into labour properly under those conditions. So we were all sent out of the hospital to ‘get rest’ for the night and scheduled to come back in the morning and try again.
My friend and I had to find a hotel for the evening and they were all booked. The small town we were in did not have a reliable taxi service and we ended up walking for over an hour trying to find a place to sleep. I cried all over the place. I cried in the coffee shop, I cried in the diner, I cried down the street and yelled at nothing because there were no people out. My friend was amazing and supportive and cried with me. If you cry in public, it’s okay. People will get over it and just maybe, you’ll meet a good one who will ask you if you’re okay or need help. It’s also okay to tell someone the truth when you’re sad and say, “My baby just died, I’m waiting for her to be delivered right now. I never got to feel her inside me, I never got to know her while she was alive, and now I will never get to. It feels awful.” I don’t think there’s anyone who I told since it happened who also didn’t cry. Totally normal.
The next day, my mother and a swarm of friends from Canada had descended on my house and were watching my daughter, cleaning my place and tending my garden. One friend from the UK even decided to get my eaves fixed and had my couch cleaned. My partner was able to fly down and try to make it for the labour.
My friend, who is a nurse, was amazingly helpful to both myself and my surrogate. Advocating with the hospital staff, making sure I didn’t have to have my ID checked each time I left the area, being the one to explain that we were ‘those people’ with the still born inside another person.
Labour began and I asked my friend, who is also a photographer (as well as nurse and badass moral support), to take shots of the labour. My surrogate’s husband asked if she wanted his hand, she said no. I asked if she minded if I held her hand and she said of course. So I held her hand, thinking of how brave she was. How womanly she was to grow someone’s child and not want to bother anyone with her pain. Trying to tough it out on her own, but still be there for me. My friend, destroyed with her own pain, but trying to capture the moment honestly, so I would have a memory — at least one, with my daughter. This is always how I have seen women in grief. Solid and soft, all in one. An earthquake proof hug.
The doctor looked up, delighted, (I’m sure this was a reflex) and said, “Oh, she has so much hair!” I knew she would have hair. Just like I did, just like her brother did. I cried. As she was delivered, we all saw that she had the cord wrapped around her neck twice, just like her sister did, which is how I ended up in a c-section with her. Tiny Dancers, twirling in the warm sauna, enjoying the thump, thump, thump of the heartbeat rave.
My then-partner arrived shortly after labour had completed and we were in a private room at that point. It’s also important to note, that while screaming and crying in public are acceptable, not doing that and not crying are also acceptable. Some people can’t and won’t and that’s okay too.
There we were. With so much effort and a dead little girl. A perfect little girl who had been in the warm sauna too long. Some skin peeled. She had blood pooled in parts of her face. She was gorgeous and I refuse to photoshop her now. There are groups that go in and take photographs of your babies that are still born or pass after birth. I did not know, but I was offered this service at the hospital. I also do photography so it was my goal to take all her shots myself. My friend bathed her for us, we dressed her in the outfit I was going to take her home in. She was larger than her sister, and the outfits were a little small. We had been moved to the post-partum ward where there was a little courtyard and I wanted to have photos of her with the sunlight on her face. She would never get to see the sun.
Now again, I am a public person, and my method of grief is not for everyone. I have always found great strength from telling my stories, and have amassed a stellar community of helpful, strong people with more empathy than the universe has stars. I now know several other parents who have lost a child and we talk regularly. However, I posted my photos on twitter and had Child Protective Services called on me as though I had ‘gone off the deep end’. It was deeply intrusive and insulting and I can’t even imagine the type of broken thought processes that go through the brain of someone like that. It was a non-issue for CPS, to their credit, but still on top of losing a child, that happened.
I only got one day and then the funeral to be with my sweet little baby girl. My tiny little Rook. I took as many photos as I could, because that’s all I get. I speak about my grief, because my love for her extends well past her death. My arms will not raise to the sky, with an open chest, but my heart is not closed. My words will never be the movie ‘no’. I am reminded daily of all the amazing people who helped me through this hard time and all the times before it, and I will always ask strangers crying in public, “Are you okay? How can I help?”
Reminders of people whom you cared deeply for, but now are dead, are never easy to experience. That game you used to play together, their favourite holiday, a gift they gave you… little flutters in the back of your mind initially make you happy, then a little wistful, ending in ‘there’s-something-in-my-eye’ sad.
My Grandma, who died just about a year and a half ago, did everything when we were little. She made my whole highland dance troop kilts (yes I highland danced – shut up), sewed Halloween costumes, baked, hiked, camped, made all the grandkids their own stockings, dyed a wedding dress black for me in the start of my goth phase (again, yes and also shut up), taught me to sew and basically crafted like a crazed, bedazzling motherfucker. So, there are very few times that I go through daily life without being reminded of her.
This christmas, I wanted a happy reminder that she was totally kick-ass when she was alive, without the sad aftertaste.
Partridge in a pear tree
My family grew up fairly low income (for many generations) and have learned to be very creative. My Grandma had continued the tradition of making “jumble jar art” out of covering various items with modge podge and sticking interesting found ‘art’ to it. Grandma was so into this that she had an almost hoarder level of craft supplies when she passed and not much else. So, much to my delight, my inheritance was a couple of bags of miscellaneous beads, buttons and broken pieces of interesting looking crap. (Note: This was real delight.)
Crap craft pile in hand, a two year old who I wanted to impress, and some nap times I’d rather not fill with laundry left me with the question: How do you invite your dead Grandma over for Christmas?
Christmas tree tear drop from a hideous necklace and random beads
I decided to make a Grandma advent calendar. I’d fill it with little toys and snacks that I thought Grandma would approve of, and I’d tell my daughter the story of how awesome my Grandma, her Great Grandma, was. I’d tell her how she lived, how she died and that now her ghost gives her treats in containers stuck to the fridge, every day for the month before Christmas. Boosh.
Disclaimer: I’m an Atheist, and I don’t believe in a god or ghosts at all. I kind of believe in Santa… but I firmly believe that childhood should be filled with magic, so lying to kids about things like fairies and dead Grandma ghosts is totally acceptable.
Frosty the jazz-hands snowman
I gave myself constraints, which I love for art projects. You always end up being intensely creative when you’re working with limited supplies. I only used the inherited craft junk and the traditional jumble jar methods, aside from some scrap book paper and puff paints, as Grandma only had ribbons and lace. I’m sentimental and all, but I have standards too. For the containers, I shelled out $53 for magnetic spice containers from the Container Store. Not the cheapest option, but good for space challenges and food safe for snack storage.
Santa Claus made from two earrings no one should ever have worn.
Making the calendar was time consuming and required proper use of modge podge. For those who actually want to make one, the trick is to paint it on thick and let it dry for a while or else you will be holding it while it dries, screaming the whole time about why-the-fuck your relatives loved using modge podge and not hot glue guns.
Then it’s all about what could you possibly make given a pile of random shiny things and channeling a dead Grandma, so that you can make your kids’ Christmas as magical as she made yours. When your child is thanking her “Great-Magga” for almonds on the 2nd day of December, the memories of her stay happy.
The scene begins with dramatically rolled eyes. Eyes rolled with such intense inner turmoil that surely the head they live in is an angst-bomb that’s about to explode. Then the almighty “No!” violently escapes her sullen, pouty mouth, spoken in a booming ‘screw-you-lady-you’re-not-the-boss-of-me’ tone of voice. The drama-eyes look off into a fantasy world, dismissing me completely. A mouse is slammed to the table and all of a sudden, someone is not talking to me anymore.
This could either be my toddler after I tell her we are not watching yet another episode of Ruby and Max on iTunes (why does their Grandma not let them live with her?), or an engineer’s response to having to support an older version of Internet Explorer (or any version of IE, really). While not allengineers have the emotional maturity of a two-year-old, there are enough of them who are so terminally passionate about their chosen detailed-code-obsession that easygoing compromise isn’t always their go-to communication style. Fortunately, years of working in tech with strong-willed engineers has completely prepared me for “momming” a standard-issue toddler, so I have some wisdom to impart for anyone attempting to deal with either of these charming archetypes.
Put some food in their cry hole
Generally a lot of bad attitude and unreasonable behaviour for both toddlers and engineers can be avoided if kept well fed. But you want to avoid fast food or sugars because of hyperactivity and heart attacks, respectively. Plus, neither toddler nor engineer is much fun on a sugar-induced mood swing. Greasy foods end up on the fingers, which ends up on your walls, or in hard to reach crevices of keyboards. So the key is to have many easily accessible healthy finger foods (veggies and dips, fruits, nuts, healthy crackers and cheeses) so they can snack to their heart’s content and be less cranky when you need to ask them to do something they don’t want to do — which is almost anything.
Reward good behaviour
Toddler coddling with stickers, sugar-free candies or play time is nothing new or revolutionary. If you want one of the tiny human monsters to do something for you, then offer up these tokens with ease. It’s a harder thing to internalize as a tactic with grown-ups though. Yet, inexplicably, it super works. It is a lot easier to get grumpy people to do what you want if you give them fun little things to cheer them up or dangle a carrot on a stick in front of them (to be redeemed when the job is done). I’ve had many a conversation with other Project Managers who wanted to go with the “just do your fucking job” approach, but there are enough tech jobs out there that you may end up with a retention problem. Embrace your inner parent and suck it up.
Survive the tantrums
I’ve had many an engineer have a full on tantrum in front of me. No lie. “You can’t tell me what to do,” was my personal favourite line from a developer when I was the project manager at an ad agency, seconded by “You can’t say I’m not good at my job.” While you may want to shout, “It’s my job to own what you do!” that rarely gets you the desired outcome.
There are many theories as to what to do with the tantrum heavy toddler, including: time-outs, hug restraints, or completely ignoring them. These don’t usually work with engineers though. I like the approach of empathizing with their plight (no matter how unreasonable it seems to you), offering up a little distraction and then letting them sort themselves out. For a toddler it looks like this: “Yes, it is sad that you can’t have another cookie. Mommy is sorry that you’re upset, but you can play with Legos right now if you’d like.” Then you allow the fit to continue if that doesn’t work. With an engineer it looks like this: “Yes, it is sad that half of our user base is on IE6, but they work in offices where they have no control over upgrading their browsers and if we don’t support them, we will not have pay cheques. You do have to fix that log in screen by tomorrow, but for right now you can play with Legos if you’d like.” As with the toddler, the fit might continue and you go off to drink in the dark.
Define a hostage negotiation approach
“We do not negotiate with terrorists” is fine and dandy when you’re just dealing with peoples’ lives, but what if someone is holding your code hostage near launch day? Or your ability to get some groceries and you are out of milk and diapers…or worse — out of tea? These are the things that really matter, people! Sometimes you do not have time to wait out a tantrum and just need action. This is when giving in is almost the only option. But you’re not reallygiving in, you’re just giving in…for now. Full scale placation is the only approach when you just need to take Screamy McScreamerson and affix her, bondage style, to the front of your bike (in a regulation child bike seat) so that you can get the food you need to live. There is no reasoning with the toddler-monster, and the return policy on children is spotty at best.
Here is where dealing with the toddler-engineer is a little better. You can (at the very least) fire an engineer. They know it, you know it, and presumably, they kind of like their job. So, the above approaches should be all you need to handle any toddler-style unreasonable behaviour. Holding code hostage is a complete dick move. Anything above and beyond general grumpiness should really lead to dismissal after a few warnings. You are, after all, not their parent and people should be expected to behave with a little decorum at work. However, do try to placate them until after you’ve launched (eye on the prize), then you can feel free to send their ungrateful ass off to unemployment-military-school.
This too shall pass
As cumbersome as it may feel while navigating the tumultuous waters of the toddler/engineer tidal waves of misunderstood emotion, it is all working towards a common good. You love your child, who is in the process of learning how to be human and will eventually get over this stage of life. Plus, your kid is mostly awesome and these are transient traits heavily punctuated by regular kisses and cuteness. Your engineer (who may or may not be cute) is very good at their job, which is why they were hired. They are mostly great and helpful, plus they’re usually only grumpy about things that are, at heart, valid concerns. Addressing potential issues at the onset of projects generally nullifies toddler-engineer tantrums, so start there and hopefully you’ll never have to give anyone another time-out at the office.
After my friend Linda was diagnosed with a type of breast cancer that was was only treatable by chemotherapy, radiation and surgery, we decided to do a photo series of an Apocalyptic Ballerina together. We had always wanted to do this, but suddenly it became more poignant. After some chatting, we thought it would be great to make it a fundraiser for a local breast cancer charity. We partnered with Breast Cancer Action, a group that researches and educates on environmental causes for cancer, and embarked on our first charity event. It was Linda’s first ballet photo series, my first solo photo show, my first composite photo/Photoshop-heavy picture attempts, and a hell of a lot of fun. We also learned some things.
Charity is harder than it should be
One of the first things we discovered is that if you want to make money for charity and not have it taxed as income, it is not easy (we did this in San Francisco). You either have to find a charity to work with you (which we did), or you have to fill out a seemingly endless stack of paperwork to get full-time or temporary charity status. Also, the charity itself has to do a huge amount of work for you, to allow you to help them, as they are subjected to the pile of bureaucratic mess that you are trying to avoid. So not all charities are willing to partner with someone who wants to do their own event — though they will all just take straight up donations. Marie Bautista of BC Action was our charity superhero sponsor. As we wanted to provide tax receipts for people who purchased art, there were many stipulations we had to follow. Also, we found out that you can only give tax receipts for physical purchases for the amount above the cost of the physical item. Charity, it seems, is in the paperwork.
Most businesses don’t donate a lot to charity
We had started out thinking that we would be getting all our locations, outfits, hair, makeup and prints donated to us. We had figured out a way, via Breast Cancer Action, that people who donated time or physical items could get a tax receipt for the goods or services they provided. We thought this was awesome and everyone would totally go for it. Good cause? Giant smiles? Cancer-ridden ballerina? Who isn’t going to help out with that?
It was a harder sell then we thought it would be — but we did have successes. Diva International did Linda’s hair for the Pier Shoot. They are super rad people. They were not open during the times we needed to shoot the other scenes, but they did offer to help as much as we needed. The background for the Coal Mural shoot was lent to us by Zeph Fishlyn and the Beehive Collective, and we shot that scene in the Obvious offices. eBay was the only business we found that actually has a charity policy, wherein they wave their fee entirely and let you use their service for free. They also had amazing customer service, who helped us out when we accidentally got ourselves banned by testing our auction with insane numbers that set off their fraud detector. Our mannequins and easels for the show were donated by Leslie Wong of Blueprint Studios. We got charity discount rates from our other vendors TCHO (thanks Tyler!) and Photoworks, but we both still ended up having to shell out a reasonable amount of money to make it all happen.
Another discovery we made was that businesses tend to run out of their charitable donation budgets early in the year. So if you’re planning something, start in January.
DIY and have really good friends
Linda and I did her hair and makeup ourselves after the first location. Linda was also largely outfitted with my personal clothes, as I tend to own a lot of puffy, gothy dresses. My old rave gear and Burning Man accessories were also heavily featured. This cut costs and justified a lifetime of playing dress-up. We did have to buy a cheap cat suit online, but I later re-purposed it. You can always use a cat suit at some point in your life, at any rate, so it’s never a bad investment.
Our friends: Ashley, John, Juan, Ally, Ramiro; Linda’s husband Steffen; and my then-husband, all volunteered at a few shoots each. We kept to free public locations mostly, but Ashley and John let us use the rooftop of their building as well. My friend Dan DJ’d at the event, providing great apocalyptic accompaniment.It’s amazing to have real friends to help out when you really need them, and ours stepped up to the challenge.
Special shout-out to the Chronicle building security guard for not kicking us out of the Minna Street bridge tunnel for throwing garbage around and blocking the street temporarily (giant smiles did come in handy there — and yes, we did clean it up).
You can get a disease ironically
Maybe it’s because I live in the Mission in San Francisco and am constantly surrounded by hipsters who love irony, but near the end of our shoots, I found out that I had cervical cancer. Oh well, at least I was already raising money for someone’s cancer, right? Our show was set for two weeks after I got my diagnosis and two weeks before my hysterectomy, so it was nice to have a distraction.
Apocalyptic Ballerina art is hard to sell…but cool as fuck
We did end up selling quite a few pieces and raised $4400, but we have some left. (Hint, hint!) Maybe a goth ballerina surrounded by toxic waste is not everyone’s cup of tea? Clearly we think it’s awesome, but we definitely have a target market. I don’t think we got enough visibility by word of mouth alone, but we tried, had fun and raised money for a good cause. So without further ado, I give you the Apocalyptic Ballerina!
The Apocalyptic Ballerina
The Toxic Pier
In a world of toxic turmoil, the Apocalyptic Ballerina stands guard on a pier, ready to warn nomads to stay away from San Francisco. It had recently been deemed a ‘dead zone’ by the government, but news, even official, was traveling slowly these days. She sees a war ship approaching a dock and quickly sets to writing a note, “Caution, quarantine area”, that she stuffs into a bottle and throws into the water. She hopes they get the message in time, and she wonders how much time she has left for herself.
Nomads on the moveA warning to sendCaution quarantine zoneMessage in a bottleFly away bottle
The Lookout
A month had passed since the last toxic cloud rolled in, but the Apocalyptic Ballerina insisted a sentinel be posted by Twin Peaks everyday. People needed to get the gas mask warning; no one was wearing them all of the time because of the blistering. Volunteers were waning, so she was on her 3rd shift in a row. She thought she saw something on the horizon, but she wasn’t certain. Straining, she almost wished they weren’t pumping anti-toxins from all the buildings, because then, she could smell it coming. It came over the hill so quickly she almost didn’t have time to put on her own gas mask, let alone sound the warning sirens. A wall of toxic cloud, they had created, and it was going to kill them.
The sentinel watchesSuspicion on the horizonA toxic cloud approachesBreathing in the anti-toxinsGas mask warning sounded
The Clean Up
After the toxic cloud dissipated, there was still too much chemical debris everywhere to walk around without a gas mask. The Apocalyptic Ballerina was scouring the city for ‘garbage hot spots’ to bag up. When the acid rains came, they reacted with the plastics and metals in the garbage which created a localized fog that further poisoned the ground. She thought that if she contained the trash and stored the bags under bridges, it had less of a chance to get wet. It was too easy to get ambushed in the buildings, so she preferred to be outdoors. She was hopeful that she could try to grow food one day. Even with the reduced population, canned goods were not going to last forever.
New garbage hot spot to cleanThe cleaning beginsToes in toxic debrisExhaustion will overtake meUntil tomorrow
The Nightmare
After days of cleaning up garbage from the streets, with little rest, the Apocalyptic Ballerina collapses from exhaustion. She tosses and turns as her mind fills with troublesome thoughts. She is a child’s toy, a ballerina doll, twisted from rough play and then tossed into the trash because she is no longer a perfect plaything. The garbage world she lands in is horrific and terrifying to the delicate ballerina doll. It echoes the history of the surface world of long ago, before the pollution reached critical mass. She tries to escape, through the darkness, but no matter how fast she runs, the world seems to travel around her, bringing her back to the beginning over and over. Weary, she pauses and wonders: at what point could we have stopped this?
Tossed into the trashA horrified leapBeing chased by darknessStuck in a loopA moment of reflection.
The Path Forward
According to the rumour, that the electrical field from the old transformer station repelled the chemical clouds, so the air there was safe to breathe. However, all of the people who lived there — that the Apocalyptic Ballerina knew of, had died of massive organ failure. It seemed as though, without maintenance, the transformer station could cause widespread tumours. It was unfortunate that all the gas masks stopped functioning. There were no more replacement filters and it had just gone on too long. So, she didn’t really have much choice but to risk it. There was one precaution she could take though… aluminum foil. It shielded you from the electrical field, or so she hoped. With grace and speed, she was covered in a matter of minutes. Now all she could do was take a deep breath, and wait.
Close to the electrical fieldThe foil will protect meKeep holding onA gentle armourOnly time will tell
I found out that I had cervical cancer on Halloween day 2012 (trick or treat!), after having my first abnormal pap smear ever in early September the same year. I had gone for a pap every year since I started having my period. I ended up having three procedures, culminating in a hysterectomy, during which my doctors also took out seven lymph nodes but left in my ovaries. I was 35 years old when I got my diagnosis and was fortunate to have already had a baby, who was in her first year and a half of glorious life. Unfortunately, she was heavily teething the evening I found out and my then-husband was incredibly unhelpful, so I was up for six hours that night, trying to calm her down by myself. This did give me a lot of time to reflect, though: I had fucking CANCER — boo.
Regardless of the stage you’re in, or the type you have, finding out you have cancer is not much fun. If you’re me, you then feel guilty about being mad because other people have much worse cancers than you, so what’s your problem? The first thing I learned is, it’s okay to be mad that you have cancer of any kind. You have cancer! Be mad, cry, be upset. I didn’t cry until after it was all over, because I was trying to be strong for my then-husband, and now I feel a little cheated. So please cry, rage, scream, feel hurt and bad for yourself. You deserve it. This sucks. It sucks specifically for you. No matter what the effect on other people, you need to mourn your mortality and your previously-thought-good health.
I’m going to explain the process of pap to cancer based on my experience, as well as some things I feel are really wrong in the medical industry. But I feel that I rocked this in the end. Hopefully this will help someone not get cancer, or at least amuse someone who currently has it.
1. Don’t die
Early detection is the key to beating any cancer, but not all cancers are easy to detect. HPV, the precursor to cervical cancer, is detectable before you get cancer — provided that you get a pap smear regularly.
So someone gave you cancer…
HPV (Human papillomavirus) is a sexually transmitted virus. In most it cases goes away on its own, but sometimes it turns into genital warts, and sometimes it turns into cancer. So you can be happy in the knowledge that someone probably gave you cancer. In my case, I knew that my ex-husband had cheated on me, so infer what you need to from that. However, I also have PCOS (polycystic ovary syndrome), which is an insulin related hormone disorder, so it could have been a dormant strain that lay unnoticed for six-plus years, and awakened magically by additional estrogen provided by my pregnancy. But there is no way to tell. Some strains can lay dormant for years; however I could not find any specific information online of how many “years” this entails. So not only did someone give you cancer, you will never know who it was unless you have only ever slept with one person. The only way to try and not get HPV and still have sex is to always wear a condom. As condoms are not 100% effective, and HPV is incredibly contagious, you can still potentially get it. Most sexually active people today have it; or have had it. The CDC (Center for Disease Control) estimates that there are approximately 14,100,000 new HPV infections in the United States alone, each year. You actually don’t even need to have full-on intercourse to get it, you just need to have physical contact with each others genitals. Yay!
HPV vaccines
Two HPV vaccines exist that can be given out to both boys and girls before they have sex; Gardasil and Cervarix. They are free in Canada, but Canada rules, so check how much they cost in your country. A vaccine that will help your kid avoid getting cancer, or giving cancer to others? Seems like a good idea, but they haven’t been tested extensively and there are potential side effects. In theory, I love this, but I don’t know enough about it to endorse it. The CDC says, “While both vaccines protect against HPV16, which is the most common HPV type responsible for HPV associated cancers including cancers of cervix, vulva, vagina, penis, and anus and oropharynx, only one of the vaccines (Gardasil) has been tested and shown to protect against precancers of the vulva, vagina, and anus.”
Fun with q-tips
If you’ve never had a pap smear before, you’re in for a treat. A gynecologist will insert a speculum (a plastic device that looks a bit like a hollow barreled gun) into your vagina, and press the trigger, which opens it to widen your vaginal opening. Then the doctor uses a long cotton swab to take a sample of your cervical goo. It is only a little uncomfortable and takes very little time. Generally this is followed by an internal exam, which is less fun; the doctor inserts two fingers into your vagina and pushes on your abdomen. This part is to test your ovaries to see if they are enlarged and if you have any pain. Ovarian cancer is also something that is not great for you, so just suck it up and get the test every year. As not-fun as it is, cancer is less fun.
The AMA (American Medical Association) now claims that women under 21 years of age do not need to be tested. The CDC says that young people (ages 15-24) are particularly affected by HPV, accounting for half (50 percent) of all new infections, although they represent just 25 percent of the sexually experienced population. There is a long time span between when a lot of kids are having sex and 21 years of age. If not everyone is getting vaccinated, this makes no sense to me.
The AMA has also scaled down the recommended screening frequency for most women from every year, to every three years. They claim that this is the sane thing to do, as screening every year doesn’t find more cancer statistically than doing so every three years. Remember, I got a pap smear every year. In one year, my cervix not only developed abnormal cells, it got a full-on tumor. I got cancer in one year. Also, my tumor was really close to a lymph node — so close that they decided to take out seven of the lymph nodes in the area. If I had waited for three years to get my next pap, my cancer would have spread and definitely required chemotherapy and radiation. So, to the AMA, I say: fuck you. Get your pap every year ladies. Every. Fucking. Year.
Colposcopies are fun for no one
Once you have had an abnormal pap smear, your doctor will typically decide to take a biopsy to see just how far you’ve come and how deep into the tissue your HPV is situated. This procedure is called a colposcopy. At this point, you don’t have cervical cancer, and remember, HPV sometimes goes away on its own. You don’t need to panic, and really, don’t panic ever. It’s not going to help you get better and it’s a waste of your energy. During a colposcopy,the speculum is again inserted into your vagina along with a longer device meant to bite a tiny chunk out of your cervix to send to the lab. It feels like a bad period cramp. They then open your cervix, which feels a little vomit-inducing, and take another bite out of the inside of your cervix to see how widespread the issue is. The inside bite is worse than the outside bite. It’s super fast though, and will not stop you from doing anything that day. You may not want to have sex until the next day because it makes you feel generally icky, and it’s hard to get in the mood when you’ve just had the very interior of your crotch bitten medically.
Take a LEEP
When your report comes back from the lab, your doctor will let you know if they feel that this is the type of HPV that will just go away on its own or if you need further intervention. For most of you, that was it, and you can go on your merry way. But your doctor will want to see you for another pap smear earlier than a year for follow up, to see how things are progressing. Go to these.
If you are lucky like me, then they will have found abnormal cells in a very high grade (high-grade squamous intraepithelial lesions are what they call advanced precancerous cells on your cervix) on both the outside and inside of your cervix and you will need to have a LEEP procedure or cone biopsy, which are the two cell removal options that your doctor can offer. As I have no experience with the cone biopsy, I’m going to focus on the LEEP (Loop Electrosurgical Excision Procedure). A thin, low-voltage electrified wire loop is used to cut off the abnormal tissue, which they see via placing a solution on your cervix and surrounding area that identifies the bad cells. Basically, they electrocute your cervix slightly and cut some of it off. Because my cells were so high grade, and I had them on both the inside and outside, I was sedated and had my procedure in the hospital. Often, you can have this done at your doctor’s office and do not need anything other than a topical pain killer. Due to my level of cell abnormality, they also decided to do some additional biopsies on the interior of my uterus.
The pathology report
Reading a medical pathology report is painful, even if you consider yourself an otherwise smart person. Do not feel bad. Ask your doctor to explain it to you over and over until you feel you have a grasp on it. I had my doctor draw me a picture of my interior junk and we numbered the sections, which helped a lot.
My doctor (who is mad-skilled and the head of the Women’s Center at her hospital) was confused because she found abnormal cells at the top of the uterus, but none on the sides. The portion of the cervix she removed seemed to have the same level of abnormality as they had previously thought after the original biopsy. She decided to send my biopsies to the sister hospital, which had an oncology (cancer) department, and made me an appointment to meet up with a cancer specialist there to go over my pathology report. We talked about how this could mean that I might need to have another, deeper, LEEP, or potentially even a hysterectomy. But at this point, it was all just high grade abnormal cells — nothing to worry about.
The oncologist
On October 31, I was mad that I had to go to the oncologist (cancer specialist) because I had a one-year-old and matching dinosaur costumes. I wanted to be home dressed up, handing out candy to the neighbourhood kids. The doctor’s office was swamped because of late patients from the morning appointments who were stuck in traffic due to the Giants’ parade (they had just won the World Series). My appointment at 3pm was beginning at 5pm, and I met my newest doctor and her two interns in the exam room. I felt that she was just there to consult on a piece of paper, so I began to argue that I have had more than enough people up my snatch lately and I didn’t think I needed to have another pelvic exam to round out the experience. She told me that their lab, which was a better lab, actually found a tumor in the piece of cervix they took out in the LEEP. It was encroaching on lymphatic space and I had cancer. I had cancer. Well fuck.
I sighed deeply, asked them to leave the room so I could put on the paper gown and disrobed from the waist down, as one does in those situations. I texted my then-husband, who was asking me how much longer I’d be, that I had cancer and would be late. He replied, “Oh boo.” Then we made the plan for my hysterectomy, which was to be on December 3, at my gynecologist’s hospital. Both my gynecologist and my oncologist would be performing the surgery. As I already had a child and my cancer was super efficient, we all felt this was the best thing to do.
2. Don’t suffer in silence
I have always felt that talking to people about what I’m going through is helpful. Cancer isn’t the first bad thing that’s happened to me, and I don’t think it was even the worst thing so far. It’s not going to be the last thing, either. Tell people you have cancer. Every cab driver in San Francisco knows that I had cancer. Every person who works at restaurants that I go to knows that I had cancer. You now know that I had cancer. Trust me, it really works. It might make you cry every time you talk about it, but that’s part of what makes you eventually feel better. You need to own it. You have cancer, it sucks and you’re going to fight your ass off.
People will surprise you. I had a giant outpouring of support both online and in person. My friends who had largely faded after I had my baby all came back in droves. Old co-workers, strangers, neighbours, moms on the email lists I subscribed to, all offered me help and support. The key with all of these amazing people was to take them at their words and accept their support. I hate feeling needy; it’s my least favourite feeling. I’m much more of a helper. I don’t like to need anyone to do anything for me, but this is the time to sit back, “relax,” have cancer, and let other people do things for you.
Have a going away-party for your girl parts. Seriously. I had heard about women who had breast cancer, having parties for their breasts before mastectomies, and I thought that was just great. So I had a party for my uterus. I asked all my friends to bring me a flower they thought most looked like female genitals so that I could have the bouquet in the hospital for my recovery, and I served pink foods. One friend, a gay man, said that no flower reminded him of a vagina, so he brought me a nutria skull (in lieu of the creepy-store-where-one-can-buy-animal-skulls not having a beaver). It is one of my most prized possessions.
3. Have fun with your hysterectomy
Hysterectomies suck and hurt and the recovery time is generally given as four to eight weeks. I had pain for much longer than that, but I’ll go into the recovery in a bit. The main point I want to mention here is that you’re going to need help. There’s nothing worse than feeling like crap by yourself. Having friends and family around is going to make you feel a lot better. My mom flew down before the operation and stayed for 18 days to help with my baby. I found out that my husband was unemployed and cheating on me throughout my entire recovery, so if you feel you are in a bad situation and you have no one to help you, having someone who is supposed to help you but doesn’t isn’t a picnic, either. My friends and family, on the other hand, made up for the bulk of that. Also, I got my doctor to take a photo of my uterus (as shown above), which I Instagrammed (why not?). When else will you get to have a photograph of your organs on the outside of your body? Hopefully not often.
Set up a care calendar
I set up a care calendar for people to make and drop off food for my mom, my son and me. Because my daughter and I have a gluten intolerance, this was additionally cumbersome, but people made amazing food for us. Moms on my email lists volunteered to come over and have play dates with my daughter so that she could see people from the outside world. I had a new friend over to hang out pretty much every day, and I got a lot of visitors. There are plenty of care calendar options, but the UI on most of them are terrible. I’m hoping that people make new ones, so I’m not going to link to them. But they are very handy in coordinating people to help you out.
Resuming normal activities
As I mentioned, the recovery is supposed to be four to eight weeks. I think it was about three months before I didn’t have pain, and I still get a twitch every now and again. When they say that you can resume normal activities in about two to four weeks, they must be referring to people who walk to and from their car — not so much those who carry their 23-pound toddler around strapped to their body, walk up three flights of stairs with groceries and ride a bakfiets dutch bike with a car seat bolted onto the front. Healing is going to take longer than you want. Give yourself that time. Stay in bed as much as possible, even if you are bored to tears. I did not do this and I ended up creating additional complications.
After you’ve had cervical cancer, you have to have paps every three months for the next year, moving up to every six months and then back to every year. You can always get cancer in your vagina, so look forward to that.
All the complications
I am medically lucky. I get “all the complications”. The pain medication they gave me at the hospital made me nauseous, and I vomited a lot. The other medication they gave me to replace it also made me nauseous, though I vomited a little less. The third medication made me feel a little gross, but I wasn’t puking, so we stuck with that. But it made me constipated, and I needed medication to help me poop. They almost wouldn’t let me out of the hospital until I pooped, but I wanted to see my daughter, so I nearly busted a gut to push one out.
The next week was an ordeal. I went on and off the pain meds because they were so unpleasant and made my head too fuzzy. Then I started to “leak” fluids. I searched online because they did not tell me that this was a potential side effect. I found that I might have a bladder cut, causing me to pee out of my vagina. Sweet. I’ve always wanted to pee out of my vagina: who wouldn’t love that? I was going through several overnight pads a day soaking straight through with this fluid. I had to go back to the doctor for a test where they put blue-dyed fluid into your bladder with a catheter and stuff a wad of cotton up your snatch. Then you have to walk around for 30 minutes and see if your crotch wad is blue. Thankfully, it was not. But still, fluid.
They figured out that I was leaking lymphatic fluids because I was over-exerting (walking around and crouching down to hang out with my daughter), and I had pulled some stitches. The leakage continued for about two weeks. It was disturbing. After experiencing what it felt like to be constantly wet in the crotch, I vowed to change my daughter’s diaper twice as often as I had previously because it is very unpleasant. Our bodies are miraculous, awesome, fascinating and gross.
The upsides
Aside from not having cancer anymore, there are a few upsides to having a hysterectomy. If you got to keep your ovaries, then you don’t have to go through menopause. Congratulations! If you didn’t get to keep them, then at least you get to be done with menopause early. I got to keep mine, so I get to have the hormone surge that goes along with having a period, including the intense randiness, without the pesky cramps or geyser of blood. Since I’m going through a divorce and am not interested in dating yet, I have some battery-powered partners to help me along. But not having to take birth control pills is a big upside. There are always condoms, but if you have a partner you trust who has been STD-tested, then you are free to hump your days away, pregnancy-free. Plus, you have some new and interesting scars, and scars are hot.
4. Walk the long hard road
So you have found out that you have cervical cancer, but you are at an advanced stage and require chemotherapy and/or radiation. I was very fortunate that I did not have to go through either of those processes, but I had a friend with breast cancer who recently did, so I’ve had a bird’s eye view and have some by-stander advice to give.
My friend is tough as fuck; still she would call me and tell me to tell her that she had to go back to chemo. It is hard. Sorry. Chemo is the sort of thing that is different for everyone and for every cancer too, so it’s really difficult to tell you what to expect. Join a support group. Get a therapist. Find all the books you want to read, load up your iPad, and get ready to hunker down. Because you got this. It is a huge pile of suck, but if your physician feels that it will help you and get rid of your cancer, then the odds are in your favour. You need to do all the things you can to get well. If you live in a state or country that has medical marijuana, go for it. I’ve been told that the nausea and overall body feel of chemo is heavily improved by vaporizing marijuana. You are fighting for wellness; use the tools at your disposal, and feel good about it.
My friend thought that radiation was less awful than chemo. So if you’ve already done chemo, consider radiation your less shitty follow-up. Again, I have no personal experience with either of them, and I wish you all the strength in the world.
Facing the road less traveled
You are at a stage where they do not feel that treatment will help you. I am so, so sorry. I clearly do not have experience with a terminal diagnosis, and I can’t begin to imagine how you feel. I only know what I thought about what I would do when I was in diagnosis limbo. Eat all of the things and hug all of the people you love. If you can travel and have the funds, do all of the amazing things you ever wanted to do, and cherish all of your moments. Surround yourself with good.
I’ve had a pile of bad happen to me throughout my life, and one of the things that has always made me feel better is trying to help others not go through what I have. If you have the time or strength, this might help you too. I send you all my positive thoughts. I wish I had something better to say.
The point of all this
I knew one woman who died of cervical cancer when she was in her early 20s; a friend’s mom passed away when my friend was young; and I know of one woman currently with a terminal diagnosis. It makes me so incredibly sad that cervical cancer is preventable, but women are still dying. There are so many things out there that can kill you that you that can do nothing about. If getting a q-tip up the muff once a year can save your life, you should really just swab up already.
