I Walked on My Toes Until I Was Twelve

The title is a sentence I start a lot of conversations out with, especially lately with my recent foot surgery. The correction of a hallux valgus deformity is often just referred to as “bunion surgery” which a lot of people don’t take seriously as a medical condition, since a common cause of the condition is long term wear of ill-fitted footwear. That certainly contributed to the acceleration of an already worsening problem for me, but only because my feet were already so wide it was impossible to get non-custom shoes in the width I actually needed. So the inability to find properly fitting shoes caused my feet to get wider and more deformed. I imagine very few women in their 30s, 40s, and even 50s having this surgery arrived by the same path I did. Professional women are expected to wear shoes that are horrible for their anatomy, without much thought put into proper care of their feet. I was told one time by a manager that old adage “dress for the job you want, not the job you have.” Only she was chiding me for wearing tennis shoes to a call center, saying that dressing the part meant having to wear dress shoes. I sat across that desk from her and plainly said something like “I wear a size 7.5 4E. They don’t make dress shoes wide enough for my feet. I don’t get paid enough to spend hundreds of dollars on a pair of custom made shoes. So that isn’t going to be something I change.” She just looked at me for a moment, flabbergasted, knowing she couldn’t keep going down this particular line of coaching with me and moved onto something else.

It’s Not a Vanity Thing, I Really Am in Pain

I get shooting pains in my feet (both, at random) and general soreness from standing for more than a few minutes usually that leads to worse pain the longer I stand. I’m always early to shows because if I don’t get a chair I won’t be able to stay. That, and I want to sit close so James can see, since he is practically blind in one eye. I had my first bunion surgery a little over five years ago. The surgeon told me I’d be able to dance barefoot after three months probably. I was not walking at all until after three months, and it would be six months after my surgery before I could perform again. It would be a full year before I could dance with any sort of confidence in my balance again. The angle on my right foot was so severe, I still don’t have my balance back on that foot yet. I’ve developed a callous almost the size of my old bunion to compensate. Below are the x-rays from before the surgery in December 2013, and again in February, after the surgery.


I’ve shared these before on social media, but it bears repeating just how messed up my feet are from walking on my toes until adolescence. How could this happen? Who let this happen? Why did you start walking on your toes? All valid questions. My mom told me that when I was a baby in my crib I would pull myself up on the side, so high up that I’d be on the tips of my toes and they’d start to curl under. No one knows if I was born with short heel cords, or it was just something that I did since I was a baby learning to walk and never grew out of. My mom smoked menthol cigarettes while she was pregnant with me, and around me all my life until, well, she had to quit. I blame my poor circulation, weird anxiety brain, pretty much all my congenital health problems on being exposed to nicotine and hundreds of chemicals while my nervous system, lungs, heart and everything else developed in and out of the womb. So, if anything, it was likely a birth defect. But the ignorant doctors of the 1980s kept telling my parents I would “grow out of it.” They prescribed really ugly shoes that only made the kids bully me more, and did nothing but frustrate my parents for blowing out the sides of yet another pair of expensive shoes they could not afford. Finally, when I was 11 years old, my great Aunt Bubba, who I found out later when she passed was actually a ballerina at one point, saw me and asked “what is wrong with that child? why does she walk on her toes?” My mom explained I’d always done that and the doctors didn’t think they could do anything for me. My great Aunt knew better, and made a decent sized donation to Shriner’s Hospital for (Crippled) Children for me to have an immediate consultation. Since they serve families regardless of their ability to pay, at the time there was usually a year long wait list to be seen.

The Bullies of my Youth

Kids used to tease me saying I wanted to be a ballerina and that’s why I walked on my toes. Truth was, I wish I’d been able to go to a dance class. My working class parents could maybe afford that type of thing with one child, but certainly not with two. I was told at one point if I had taken ballet classes as a kid, that the first they would have done is taught me how to stand flat on my feet, and it probably would have been beneficial. The kids in school called me “twinkle toes.” I was extremely underweight, skin and bones, so they used to body shame me and the way I looked, too. Of course, I was called rude things once I got glasses in the second grade. I used to remember more specifically the names they called me, which were very hurtful, but I’ve grown past keeping those things taking up space in my memory I guess. Point being, I cried every single day. Even in the summer. I was a happy enough kid, I think, but I am a very emotional person. I am so sensitive even now because I was constantly bullied for things I had absolutely no control over. Having glasses, being skinny, having a physical deformity so I walked on my toes. You know how shitty it is to make fun of a differently-abled person? Yeah, all those kids were shitty to me. Even some of the teachers were. I’ll never forget in the third grade when Sister John (every bit the militant nun in a German-Catholic school in South City you’d expect) pulled me aside after recess one day. The rest of the students weren’t really paying attention, settling down from the afternoon break. She had me stand at her desk and stand as high as I could on my toes. Higher. HIGHER. Now, walk.

The desks were arranged in a semi-circle that day, so I started at one end of the room and walked in front of each of my classmates, as our teacher, the trusted adult in the classroom, started to point out how my knees turned in, how my back wasn’t straight. She continued having me walk as she told the class all the health problems she felt I was going to have as a result of walking on my toes. I can’t remember what all she said, but I can remember the hot feeling in my ears, and the tears welling up in the corners of my eyes as I felt the judgement of the people who already hated me, jeering at me for the very thing that made me the most self-conscious. After the gauntlet was over, I was dismissed to return to my desk, where I couldn’t hold back any longer. I silently cried and wiped my face, just like I had done so many times before at school. I think, and hope, that was one of the times I immediately told my parents of an injustice against me, and was one of the times my mom went into protective mama bear mode and tore the principal a new one. Maybe it wasn’t. I might have held onto that trauma for a long time before I told anyone, I honestly can’t remember. Either way, it was fucked up what she did. It turns out, she was trying to embarrass me into walking correctly, because she thought that I was doing it for attention. It wasn’t, oh you know, a real medical condition or anything.

This type of thing was indicative of how the school treated me my entire K-8 there. Not all of my teachers were nuns, but even the lay people weren’t any better. My sixth grade year, before my first leg surgery, I fell running backwards in gym class playing frisbee. I sat on my left foot going down, against the asphalt playground/parking lot. It hurt right after, and for the rest of the day. It didn’t swell up, but there was a pinpoint bruise on the top of my foot that looked nothing like any other injury I’d had. I went to the office, they put some ice on it, asked me if it felt better (which it did once it was good and numb) and sent me back to class. The rest of the day I walked on the left side of the staircases so I could hold onto the banister and hop down as not to put anymore weight on it. Since this was completely out of order, the rest the children walking single file on the right side of the staircase, I was threatened with detention if I kept doing it. So I walked on a fractured foot the rest of the day, because I was only acting like I was injured for attention.

I showed my mom as soon as I got home, and she said “that looks broken, we’re going to the ER right now.” It was only a fracture, but because I walked on my toes, instead of putting me in a walking boot the doctor decided to cast it so it could heal correctly. Otherwise it wouldn’t. I missed school the next day, and went back on Thursday, on crutches. The kids were all aghast. They asked me what happened. “I broke my foot in gym class, remember?” Oh, oh I guess you really did break your foot… Yeah, ya think? My mom was furious. She said “I don’t care if my kid says she has a runny fucking nose, you call me.” She gave no fucks about cursing in front of nuns. My mom was a spitfire, and I am forever grateful to have gotten my passion from her.

What happened next was the damnedest thing. Kids who hated me wanted to sign my cast. They offered to help me carry my books so they could get out of class early. Those fuckers were completely taking advantage of me, yet again, because I was weak, and shy, and naive that they actually cared about me at all. I had one close school friend growing up, because she was as much of an outcast as me. She was from Laos, born in Thailand due to her parents escaping persecution (i.e. her and her sister were the only first generation Asian-Americans in our school) and so she ate weird food and her family had strange customs. She spoke another language that no one outside her family knew and sounded so much different than other languages we’d heard. They were also Mormon, but attended this private Christian South City school near where they lived, so she learned Catholicism with the rest of us, but was still very much an outsider. Her and I were the unpopular-unpopular kids. She wanted so desperately to be popular though. But she was friends with me instead. She was the only one I trusted, until the following year (which turned out to be a big mistake) to actually be my friend. The popular boys would make fun of me because they knew I liked one of them. They tormented me by making me think they actually liked me, and then would throw it in my face and laugh at me. A common theme throughout my life. One of the popular boys said he wanted my cast when I was done with it. I knew he was trying to fuck with me, so I kept it when they cut it off and left it in his locker. I can tell you, this did nothing to help me in the popularity department.

Popularity is Overrated

The reason I tell the story about having a cast on my leg is because when I went to Shriner’s for my consult shortly after that, there was confusion as to whether a procedure had already been done since I was wearing a cast. I had to explain no, I’m just a klutz and broke my foot during PE. That is indicative of my entire life, not being athletic. Always picked last for any team if it involved physical activity, I was the epitome of geeky awkwardness (I still tend to think that I am.) I almost didn’t graduate high school because of not having enough credits in Physical Education. I was wearing black PVC platform shoes at school (because I worked at Hot Topic as a teenager and wore my work clothes to school) and my weak ankle gave out and gave way to a severe sprain that kept me out of gym for long enough to lose it as a credit for the semester. There weren’t enough days left to “walk it off” after school, so my high school principal had to call a meeting with my parents and all my teachers to address how I was “failing school.” I was a mostly A & B student, with a few ‘H’ for honors classes which were graded as a 5.0 on a 4.0 scale and given college credit. But I was failing school and wasn’t going to graduate because I wasn’t a physical specimen that could just take an extra gym class to make up the credit. Most of the staff of my high school hated me as almost as much as the staff of my grade school. I was going to miss my graduation and all the graduate activities, make up the credit in summer school, and get my diploma mailed to me after the summer, or get held back a year, fucking up my FAFSA application and college admissions. So my dad had the bright idea during the meeting to have me write a paper about ankle injuries and physical therapy. At the time he was taking community college classes to become a physical therapist, inspired by the orthopedic nightmare of my life. He never went anywhere with that pursuit, but I knew what he was getting at. We walked out of the doors of my school and I said “you’re going to write that paper for me, aren’t you, Dad?” My mom said no, and I was going to help him. He told me I was going to write the bibliography for the citations. I said fair.

Going back to before high school, I had leg surgery the summer between sixth and seventh grade just after I turned 12. It was the first surgery I could remember, being that the one I had when I was three years old for two hernias that had gone undiscovered since birth until then, was a distant memory. I had to stay overnight in the hospital again, which was scary. I don’t know how long I was there, probably just a few days, but it seemed like weeks. The surgery was a bi-lateral heel cord lengthening, and you can still see the long scars on the backs of both my calves from it. By the time anyone figured out that I was not actually going to “grow out of it” my tendons had grown too short for me to actually stand flat on my feet. I couldn’t touch my toes, it was physically impossible. I failed the “President’s Physical Fitness Test” not for being grossly underweight or non-athletic,  but for having a physical disability that no one believed I had. Because of that disability, and my low weight, and my poor ocular genetics, my being intelligent, and probably some other reasons pertaining to my awkward personality, I was the target of bullying from children and adults growing up. It made it very difficult to trust anyone, because I learned the hard way that sometimes people are your friend because they want something from you, and sometimes they pretend to be your friend to simply expose your naivety at thinking anyone would actually want you as a friend, for their own amusement.  Those people were almost exclusively the self-proclaimed popular people. Or they were the people on a lower social rung, that hoped by kicking the outcast while she’s down would gain popularity points with those who would be doling them out. So, in my opinion, popularity is overrated.

Learning How to Walk Again

Before this most recent foot surgery, which was promised to me as being a breeze compared to the last, and has so far delivered, I would say that I’ve learned how to walk three times now. The first time, as a baby; after my heel cord lengthening, as a teenager; and after my first bunion surgery, as an adult. I don’t expect to have to learn to “re-walk” this time, since this is a far less invasive procedure than the last, but I will have to learn to re-balance, again. The surgery from the x-rays shown earlier took quite a bit of my foot away, hence the callous that has grown in its place. I had to learn how to walk again with a completely differently shaped foot than I was used to. With my leg surgery, it was even more intense. I was in plaster casts from below the knee, to the first knuckle of my toes, for three months. I walked with crutches everywhere, but I still had to go to school. Still had to have people carry my books for me so they could leave class early and pretend to be my friend. After that, I had to go under anesthesia again to get my casts changed. They didn’t want the trauma and pain of having me awake while they examined and moved my still-tender legs, so it was just easier as a child to knock me out. Going back to that thing of not having adults believe you, when I had my casts changed and was asked how I felt, for days afterwards (and to a lesser extent, a couple of weeks) I could feel and taste the anesthesia in my lungs when I breathed. They told me that wasn’t a thing. I later read that going under general anesthesia multiple times close together can trigger a depressive episode. That combined with a major life change, my parents’ divorce, and moving from our childhood home could have all contributed to the self-destruct button being woken in my brain.

I hated the color pink with a passion. I don’t anymore, and subscribe to the “pinks and goths get along” thing now. Not when I was a thirteen year old. I was convinced pink was the color of popular, the color of bullies, the color or my oppression. The doctor ran out of purple fiberglass while I was knocked out, so they figured hot pink would be fine and I woke up to the horror of having hot pink casts for the next three months. New round of casts, new round of everyone wanting to sign and draw on them and certain people fucking with me about leaving a cast in their locker because I called them on their asshole bluff. It was even worse when I was in leg braces after I was finally done with casts. I picked out the translucent nude color plastic, so it would blend in with my skin and be the least noticeable as possible. Some fucking adult somewhere, saw my hot pink casts, and thought I didn’t want the boring ol’ skin tone ones and that my plastic leg braces should be HOT. PINK. I cried. They said it was too late and they were already made custom to my legs and I couldn’t change the color. You can’t even imagine what it’s like having a neon sign painted on your broken body parts screaming “look at me, I’m disabled!!!!” I even got made fun of once for them because bumping the velcro straps that held them against my shins at the top sounded like me opening up a maxi pad in the bathroom, and the other teenage girls made fun of me because I wasn’t using tampons, so that must mean I was still a virgin. A virgin in grade school?! The horror!! I did, in fact, use tampons. Not that they would believe me when I told them that. But apparently they all had boyfriends and had been having sex. (No they hadn’t, it was a lie.) But it was very demoralizing for me, and I felt like I was so ugly and broken because no one wanted to have sex with an awkward, four eyed, skin-and-bones, handicapped nerd.

Once I was in physical therapy, my grandma would pick me up from school and take me to the doctor. The first time I convinced her I didn’t have to go back after PT. She got in trouble with my mom and mad at me for lying to her. I really wanted to be in that place with those people as little as possible, so you can’t blame me for trying. *shrugs* The physical therapy after being in casts for six months and having brand new legs and learning how to walk again was horrifically painful. I the stretches I had to do to make sure my heel cords stayed nice and lengthened were fraught with crying and met with resistance. My parents are amazing for having put me through all of that, knowing that it hurt me but that it was also helping me. When I was in the hospital recovering I played wheelchair basketball with some other kids, and I was so grateful that I could actually walk again when the time came. Graduating from a wheelchair, to a walker, to crutches, to leg braces to finally bare legs was humbling. But for 2/3 of the school year in seventh grade my legs were goddamn hot pink. People wanted to beat me up more than ever. There was one time on the parking lot after school that year a girl, Jamie, had her fist held over my head about to come down on me hard when she was interrupted by a teacher who happened upon the scene. I was so terrified of this…jock popular girl. If you somehow ever happen upon this blog post Jamie, and actually read this far, I hope you feel fucking terrible about what I’m about to say next. This bully who had tormented me almost my whole life, saw me the next year walking normally, no leg braces, and wanted to be my friend. Wanted me to be her science fair partner. Wanted me to hang out with her. It was the most shallow thing I’d ever experienced in my measly 13 years on earth, but I learned exactly how horrible people can be.

One More Thing…

I have to tell you about the rooster. I was still wearing my leg braces the first part of the summer, and we went to visit my mom’s best friend and her husband at their house out by the Big River. Nice piece of land, very steep hill directly down to the river with nothing but a piece of pipe for a railing. See, they had chickens, but the coop had washed away in the flood of ’93, and this was only two years later. So the chickens and rooster lived in their house. They just kinda wandered around the property during the day and then slept in the rafters of the big cabin-like house at night. Well roosters hate the color red. Or any variation apparently. The rooster absolutely did not like my hot pink leg braces and proceeded to chase after me screaming through the yard where I almost ended up falling down the hill into the river, but thankfully Julie’s husband intervened and punted the fowl away from me. I don’t think the rooster knew I hated those braces just as much as he did.

Day Tripper

In an effort to treat my anxiety and depression, I read some research on psilocybin trips and the most effective techniques for this application. What I learned is that working on your art while tripping could have therapeutic effects. I also know that with being on a natural hormonal cycle and not synthetic, my lowest days are right at the beginning of PMS. It brings back thoughts of wanting to hit that self-destruct button, my brain demons push through the barriers I’ve created. Not a good place to be in. I get angry, emotional, and irrational. So, I thought tripping at the beginning of this would help curb that negative tide of feelings and replace them with more positive ones. Plus, since I’m working almost every weekend until the end of the summer, this was really the only chance I’d have for a while. It happened to coincide with my Un-Birthday celebration, wherein I throw my usual birthday shenanigans two weeks early because I miraculously was accepted into two Festivals on back-to-back weekends before and on my birthday.

My Life Does Not Suck…

The plan was originally going to be tripping on Saturday at some point. During the day we headed to Cuiver River State Park for lake swimming, hiking, picnicking, and kayaking (only it turns out the kayaks were all already rented long before we arrived in the mid-afternoon.) James and I were accompanied by our lovely friend Apple, and we had a wonderful day of adventure relaxing in the water, eating delicious food, goth sunbathing in the shade, and wandering down a dry creek bed finding all kinds of interesting rocks and plants that are usually underwater. Afterwards, we quickly headed to see the Nerds of Prey at the Monocle in their early show, where I had no idea I was actually being celebrated for my early-birthday. I was sung a little song along with the bride-to-be, and we were both invited up on stage for a some hot-burlesque-lap-dance action. I could not wipe the shit-eating grin off my face as I was surprised to find Abi Sith and Rose Whip would be tag teaming the bachelorette and I. Here I was already red from laughing hysterically at the acts in the first half of the show, giggling like an idiot repeating the phrase “my life does not suck.”

We hung around the bar for a bit longer than planned after the event, as people we knew were trickling in for the later show. We headed back home so we could get gothed up for Conspiracy, the kinky fetish dance and play party at The Crack Fox. At that point I had already decided I was not in a good enough head space for a trip, as right before we left for the day to go to to the park, I got hit with some unexpected…plot twists. For one, I knew that being in around someone I recently unfriended (and abhor their behavior for what it is doing to one of my friends) would not be conducive to the therapeutic effects I was seeking. So I ended up just getting really drunk and high instead. And it was still so much fun! A big group of friends met us there and hung out almost the entire night. James and I got to play a bit on the edge of the stage because, as I’ve found, doing scenes in public is part of my humiliation kink. Yes, I do get inebriated and still do scenes because I trust my husband implicitly, and getting out of my own head first is the only way for me to get into sub-space. People can say what they want, it’s how I like my BDSM. We left the bar shortly before last call, and had a ridiculously fun romp at home. All the while, I kept the antagonistic triggers at bey so I could go into Sunday with all the good, happy feelings.

They Call Me Mellow Yellow

Setting the alarm before bed for a mere six hours later at 10:30am proved to be a wise choice, as we were able to move an afternoon meeting to mid-morning, before seeing my family for me and my sister’s joint birthday lunch at Mellow Mushroom. This was suggested before I even thought about tripping this weekend, but it seemed fortuitous that James suggested it and my sister was already going to. I chopped up some fungus before leaving for the gathering to take with to the park afterwards. We did a half-and-half pizza with one side being all mushrooms, intentionally to mask the flavor of the ones I’d be adding later. When we got to the park after lunch, and I started to choke down and gag on the dry, musky bits on top of the delicious doughy goodness, James starting asking me about the drink I’d had at the Monocle the night before. Which was odd because he doesn’t drink, so I was confused by his sudden interest in the ingredients. He then proceeded to talk about various foods and beverages until I’d consumed all of the slice and extra toppings. He proudly exclaimed “it worked!” as he’d cleverly distracted me with thinking of different tastes and foods so I wouldn’t think about the source of my gagging. Such a clever fellow. One of the many reasons he’s my soulmate.

Walking around Laumier through hardly traveled trails far away from the sculptures was exactly what I needed to get me into the right mindset for the day. I did slip down a rough part of a steep path once, but it was a gentle fall and quite expected it. I brushed myself off and kept traveling through to see where we ended up. After about an hour of exploring and Pokemon hunting, I started to feel very, very heavy. We were both starting to feel the effects of the heat of the day and decided to head home. I started tripping hard as we left the park. I was a little shaky at first, because of the lack of a full night’s rest and the caffeine from the Mellow Yellow at the restaurant, and I was worried about traveling on the highway. James suggested I lay my seat back, and I watched the beautiful clouds and trees, noticing none of the cars on the way home. He knew exactly how to take care of me.

When we arrived back the stairs leading up to the main floor from the garage seemed an impossible feat, but I managed to make it up to the top, only to find myself wanting to sink into the floor as soon as I was able to. I handed James the CD on our table, the one our friend Matt Monroe had given us the night before at the show. I had immediately become transfixed by the eyes on the album cover for Turtle Club, and knew that I needed to listen to it. We ended up hearing it twice , because I was so into it I just wanted it to keep going. I started by dancing on the floor, rolling around, doing kicks and toe points and all of the sexy things I am too afraid to do on stage. I got up and danced around, tossing clothing when it got too cumbersome or hot to wear. I felt the music in my soul and my bones. “This is how I work on my art” I thought to myself. I ended up near at the foot of the stairs to the top floor, staring all the way up to the skylight which seemed, again, impossibly far away. I kept saying how much my eyes were watering, then I realized it was because I was so happy I was crying.

By the time I was ready to go outside, I had already shed most of my clothing, so James went and grabbed one of my sarongs and wrapped me in it, because it was a somehow difficult task for me at that moment. We put chairs out on the back patio and watched the clouds drifting quickly through the sky, teasing of a rainstorm that would never materialize. We talked about life, work, improvements to our home, and our psychic connection. We’ve known for a long time that we are psychically linked. He had been feeling someone of the effects of my trip when he noticed he was touching his lips the way I’d been touching my teeth because of how interesting they felt. I gazed up at the clouds and remarked of them looking pixelated, which is how his vision looks all the time after his retina surgeries. I felt like I was looking at the world through his eyes. Before we went in, I got up and stood at the corner of the balcony, closed my eyes  and felt the unseasonably cool late-July breeze flow through my hair, and across my skin, with a slight swaying back and forth. It felt like the deck was moving. I felt like I was on a cruise ship. I’ve never been on a cruise ship, but it was what I imagine it must feel like.

Once back inside James put on a Lo-Fi rainy day jazz station, and I untied the sarong and danced more about the livingroom with it flowing around me like a veil. Eventually I melted onto his lap on the couch, feeling the happiest I’ve probably ever felt in my life. After he’d already stopped telling me corny jokes, I kept laughing hysterically at literally nothing. I was laughing at laughing. It was a good time. One of the things that made my trip so fun was that he had come up with ideas of things to do that I would enjoy, and I got to pick whatever I wanted, as long as I was still having fun. We took the long journey upstairs, where the full length mirror at the top had been turned around at my request, and the next part of the day’s fun was about to begin. If having a blacklight jacuzzi bath with UV reactive toy boats and ambient jazz music while tripping sounds amazing, that’s because it absolutely is. We both enjoyed the crazy nature of our lives, being in our 30s, sitting in a blacklit bathroom. My dark purple towels were somehow glowing green under the lights, and I had to make sure I wasn’t imagining it. Just like I wasn’t imagining the random feather that appeared out of nowhere while I was dancing downstairs and playing with it floating through the air.

When he was done with the bath and starting to sweat, I continued my soak solo, thinking about the meaning of my existence while watching the plastic glowing boats float around each other, swirling in the whirlpool of the dark water. When I was done he was there to help me out of the tub and dry me off. I opened the door to the closet, leading into the bedroom, and the late afternoon warm sunny glow felt like stepping into another world. I kept saying how it felt like Wonderland. Earlier when I was looking in the mirror, my reflection seemed like a person in a different dimension. I finally understood “Through The Looking Glass.” The windows were opened and a towel was laid down, and I stared out the window feeling the glorious breeze as I was gifted with a THC oil full body massage. I melted into the bed. James was so patient, waiting until I was ready to be intimate, but it wasn’t quite yet the time. My tummy was starting to grumble, and it was time for more pizza. I was insistent on not eating the mushroom slices. We turned on Netflix and watched a show, and I started to wind down from the trip. I knew I would need to be productive at some point, so I smoked a little to try and wake up. After going to the bathroom I looked in the mirror and noticed how very much I look like my mom when she was younger. I started to cry, but not tears of joy. Every month, around this time, I cry a ton about how unfair what happened to her was. I miss her so much. I composed myself, and walked out of the bathroom, realizing I was definitely still tripping. We turned music back on, and I lit all our candles, turned off the lights, and started to cuddle with James. This, of course, led to the crescendo of sexual tension from hours of sensual dancing, touching, bathing, and loving my soul mate. It was a magical evening, and with the windows open right by us, I’m sure our neighbors within earshot would agree.

I started to write this post after I made myself come downstairs and work on the computer. Ridiculously tired, I had to finish it today. I can already tell the trip had a positive effect. Being a Monday, during the crabbiest week of my month, with ridiculous customers vying for my limited time, and a whole lot of stress from various sources, I was pretty well adapted at handling it. I did not let my emotions get the better of me when presented with a situation that needed logic. I finished the day with a smile, and an appreciation for my weird little life.  It’s a wonder what an altered perspective can do for one’s mental health.


Rev. Skuzzy, Church of Subversion

Married by Rev Skuzzy, who became re-ordained to officiate our wedding.

Surreal. That’s how this day has felt. Last night I went to bed blissfully unaware of the irony of attending a theatrical seance of Aleister Crowley around the same time as the most occult person I’ve ever known (besides my grandfather) passed on to the great
beyond. I woke this morning to a couple direct messages, checking my phone as I took my morning dump. Just the way Skuzzy would want me to find out the news. “The Wickedest Man in the World” is something I think our recently departed aspired to.

I suppose there are so many varying opinions about the man because he had very unique relationships with every person he came into contact with. He was charismatic as fuck, and a lot of people liked him. Some people even loved him. Other people hated him. Some people still feel that way. Others have changed their opinion after his passing. I have, like many of us, complicated feelings about him. Always have.

I firmly believe that people come into and out of your life for a reason. I was trapped in a pretty fucked up relationship (as in, only boyfriend I’ve had to call the cops on) and he introduced me to Gabe. Evil Ed was a deranged fuck, and he knew weird people.  Back then DJ Skuzzy had been doing house parties and finally moved into a venue, the Way Out Club, for Contagion, a night of obscure and awesome music…just because. It attracted even more weird people, and as a lot of folks know, grew into Subversion. It was raw, punk rock, weird shit. I was super into the vibe and hung around. I’d been going to goth night, in its various incarnations, since I became of legal age. There were a lot of familiar faces there. I also was definitely a fan girl of a lot of performers before I ever became one.

His shows were an accessible way for a lot of new performers to get into nightlife entertainment. In fact, many people over the years have credited him with giving them their first gig. The burlesque scene here was still so underground, he had no idea he’d scheduled the one-year-anniversary show on the same night as the first Show Me Burlesque Festival . I was still a groupie at that point, and equally unaware of the festival, so I was one of like four people in the audience that night. Sorry to anyone who’s offended that I have a profound attachment to Subversion, by the way. I have strong opinions, and this is just one of them. If you’ll notice, Skuzzy surrounded himself with women with strong opinions.

He also talked a lot of women into sleeping with him. Though sometimes, he didn’t so much ask as just nonchalantly expect sex. I was not a fan of any of that after a couple times very early on in our friendship. But we still hung out a lot anyway, and he became my best friend. We had a ton of fun on our adventures, even if it was just running to the dollar store to stock up on duct tape, tarps, and jello to make fake blood. I could talk about all the little things he did over the years that made me angry, but I think I can sum that up like this: I loved who he was when he was sober, but I hated who he was when he wasn’t. I grew up with alcoholics, and I am a co-dependent enabler. He made it really difficult to be his friend a lot of times. I don’t have all the patience in the world, but I have a lot. It finally ran out around the time I found out he’d been straight up lying to my face about being clean again. This was a couple of years ago now. I tried to distance myself, because I needed all my emotional energy to deal with everything happening with my mom, and being laid off from my day job. But he kept reeling me back in, because his life was in constant crisis, and I was still trying to help him keep the dream alive of having an outlet for bizarre, offensive art.

I’ve met so many amazing, brilliant people over the years, and Gabe was definitely one of them. So many were because of him. He attracted all kinds of folks though. Some were very unsavory people. He, himself, could be considered unsavory people by some. However, there is plenty of time to talk about all the terrible things he did. Mostly in hushed circles among those who knew him well. We’re all mourning the loss of a brilliant, tortured man who preferred his reality on a different frequency than those around him, and tensions regarding that are high. Hardly anyone is surprised by his passing. He cheated death so many times with his Hunter S. Thompson levels of imbibing, it was really a matter of inevitability. I’ve been preemptively mourning him for years. I told someone that earlier this week, though I had no idea how he was actually doing. Self-preservation was to keep my heart protected from getting close to him again after having it broken by his actions so many times. So while I’m not at all shocked, I am sad and numb at the same time. I’ve already shed a lot of tears, and more are on the way. There’s so much more to say, but I have an early, long day tomorrow and I am out of energy tonight. This will likely be a series, because I miss writing, and it seems a fitting vehicle to tribute him. Among other ways…

My KCBF Adventure! (Part 2)

The experience of performing is something I am well familiar with. I loved being in school plays as a child, and loved theater so much that in high school I was a part of every production, even if I wasn’t cast in a role. I became President of the Drama Club my senior year, and tried to pursue acting in college. I don’t have stage fright, per se. I got over that a long time ago. I do have terrible anxiety though, and I am always nervous before a performance. This was no exception. I hurried through one section of my choreography like I always do, and ended up making a mistake that manifests on stage but never in rehearsal when I’m calm. I couldn’t get my stocking off because I hadn’t pulled it down far enough. This led to a struggle the audience probably didn’t notice, but the bruise on my knee for days after was a constant reminder not to put it with all my weight on the hard wooden seat for any length of time. By the time the act was over, I was just happy that I got through it with all my nerves. After the show I was bombarded with praise from fans and performers alike. I felt like a million bucks. I had impressed despite the stress, and all my hard work had paid off. One fan told me the following night that she was surprised I wasn’t selected to compete for the title, that I was that good. It had me beaming for sure.


After the show I was told of an after party, which I am all about. My friend Tracy (from conventions) helped me back to my room with my heavy chair and luggage, I quickly changed and we headed out to The Outburst owned by one of my favorite emcees and comedians, Lucky DeLuxe. I was so excited to ride the modern streetcar at 1am that we ended up waiting way longer than it would have taken to drive there. There was a man at the stop with us who was either schizophrenic or on some very heavy drugs. I was somewhat starting to regret my choice, but eventually the streetcar came and we were whisked the nine or so blocks down to the cross street of the venue, walking a couple more blocks over. When we arrived it seemed the party was starting to wind down. While low key,  it was filled with great conversation, a lot of delicious pizza, and booze. I got to hang out with some of the local movers and shakers in the KC scene, which was exactly what I’d set out to do. Networking is so very important in our industry, and very difficult at times for introverts like myself. Since there were leftover whole pizzas, I was offered to take one back to the room with me. Tracy, myself, Mother Earf, and her husband piled into their car to take us back to the hotel where some truly hilarious times ensued.


It was maybe 3am at that point, and I had enough to drink in a short period of time that I was much more animated than usual. Being that this was a four-star hotel, I took full advantage of that and sauntered up to the Concierge desk saying something along the lines of  “Hello, I was gifted this delicious pizza, but I know the box won’t fit in the fridge in my room, do you know where I can obtain some foil or something to wrap this in?” Probably not the strangest request he’s received from a drunk person late at night. So he kindly went into the hotel bar that the staff was cleaning up after closing for the night, reappearing a few minutes later with a stack of go-boxes which were perfect for keeping my pizza fresh in the mini fridge. I should mention at this point in the night my phone had been dead for some time. When I parked my car initially upon checking in, I forgot my charging cord. I had taken photos of where I was parked and looked at them before it died so I had a vague idea of where it was in the maze of three connected garages beneath the hotel and Crown Center. Tracy was nice enough to accompany me on this quest, as he was also parked in one of the garages. we spent a good half an hour getting lost trying to find it. Up the stairs, down the ramp, back up the elevator, around the corner, does this look familiar? Maybe it’s over here? The sign says maybe it is this way. He delightfully referred to it as the Garages of Mordor, as the tunnels are surely perilous should you lose your way. Finally we located it, his car as well, and I found my way back to my room safe and sound. I plugged in my phone, took off my make up, and climbed into bed around 4am.


The next morning, awaking only six hours later, I of course had tasty cold pizza for breakfast. This was not the type of hotel that includes breakfast, so Cheeseburger Minsky’s was a choice meal. I was dead set on getting in the hot tub, as I had brought my swimsuit. I didn’t realize until my arrival that the outdoor pool was heated and open all year round. It was rather warm for early May, and I decided to give the pool a try. I didn’t bring any sunscreen however, and the prices at the gift shop were exactly what you’d expect the markup to be. I headed outside after a nice walk through the fitness area and found a spot on up a set of stairs overlooking the rest of the pool area. I scanned the area for anyone applying sunscreen and spotted a group of people with multiple bottles of it. I walked over to one of the women and said “hello random stranger, I did not bring any sunscreen as I didn’t know the pool would be open, may I please use yours?” She didn’t mind being called random stranger, thankfully, and was very gracious to allow me to use what I needed. I didn’t want to be greedy, so I only applied it to my face so that wouldn’t get burned. Oh that was a mistake. I was wearing swim shorts due to not planning on swimming outdoors, and ended up with a nice lobster line across my thighs. That tan line would end up sticking with me the rest of the summer. I spent over an hour outside because it was just so nice, and it felt magical to be floating while sleep deprived and slightly hungover. I still couldn’t believe I was on this adventure, and still had another performance to do that night! The hot tub was a short stay, and after showering off in the luxurious locker room, I headed back to my room. My big, comfy, empty room. More pizza, yes, and a nap. Exactly what I needed.


Just a few short hours later the room would be filled with Bon Bons! It was nice to see familiar faces and spend some time with a group of people I absolutely adore. They had come into town just for the Saturday show to perform a group act, plus Dixie performing a solo. We went down to the food court for dinner and had a lovely time chatting about the festival, and food, and life. Soon it was time for the Queen competition, and I went up to the theater in my sparkly red gown to take it all in. Tanis Lee was competing and I was super excited for her. I saw some absolutely amazing acts, and it was such an inspiration to see the talent that our industry encompasses. I left before the winner was announced, because I still had to go back to the room to get ready for the second show I was performing in. The long night and relaxing day caught up with me, and I felt zapped of energy. “Light My Fire” is a high energy performance, and while I gave it my best, sunburn and all, it didn’t turn out quite the way I had hoped. I still got a lot of compliments from it, especially about how the the pattern of the lights cast on my silk veil fans made them look like they were actually fire.20170507-20170506-DSC_6195.jpg I really enjoyed being backstage with everyone, and I could definitely feel the camaraderie. Sitting in the audience with the other performers, and making new friends like Kinsey Scale was exactly what I wanted out of my festival experience. I made sure to thank everybody who helped make the festival happen, as I was so very grateful to be there. After curtain call I had significantly less stuff to drag to my room this time, and made it back to the theater just in time to catch the carpool to the after party at a swanky jazz club called The Green Lady Lounge. There was a bit of confusion about the party when we arrived, as it was extremely packed to the point I almost wanted to leave. I went back outside, asked around, then popped back in and took a detour downstairs to the Orion Room which was much less crowded – and I saw people I recognized.


I found out later that the name of the lounge comes from the owners’ love of Star Trek, which I find to be pretty badass. I had a very interesting experience at the bar downstairs. Not wanting to spend a ton of money on drinks, I ordered a simple mule (which was $10). I waited a while for it since the tiny bar was bombarded with customers and every transaction was rung out on a card. I paid with cash which seemed to confused them. My drink, served in a rustic-looking metal mug, was set down in front of some other guy at the bar, and when I walked over to it and took a sip, the bartender confirmed it was for me. He then took it away, added a straw and a lime, and handed it back to me. Since I was wearing lipstick I appreciated the straw, but it made me wonder if he added that and the lime since the drink was for a woman instead of a man as he had originally assumed. I pondered this interaction most of the night. Another thing my mind kept wandering to as the night went on was the interesting segregation at the collection of tables our party had acquired. At one end were the festival producers, the Queen competition winners this year and last, an older very nicely dressed couple, and some performers I honestly couldn’t tell apart from the others except that they weren’t wearing crowns. At the other end of the table were the local producers and fans I’d been drawn to the night before, a couple of other performers, and myself. I noticed us as being what I like to call “the artsy fartsy weirdos.” I dwelled quite a bit on this, actually. There is an interesting divide in burlesque between Classic and Neo. I’ve never seen it manifest into an actual tangible division in quite that way, however. It sort of solidified for me what I’ve known all along, that I’ll never be one of the “pretty people.” The outcasts and the weirdos are where I feel at home. I hope they don’t mind being called that, as I mean it with the utmost affection. As I mentioned in the previous post, one of my new favorite people is Frenchie, whom I spent most of the party chatting with. We bonded over the story of my physical disability, walking on my toes until I had surgery to correct it. It felt like such a life changing conversion. She told me that she’d love to have me come perform in Denver sometime, that she can tell I’m on the verge of blowing up in the burlesque scene. It literally brought me to tears that this accomplished, wonderful performer thought so highly of me just from a little over a day of knowing me. When I returned to the hotel that evening I wandered around in the peaceful quiet of the empty halls, with a waterfall calmly roaring in the background. Two women came giggling up the escalator and I briefly chatted with them, and offered to take their photo in front of the picturesque backdrop. It didn’t dawn on me until later that they were in the festival, and also at the after party. They didn’t recognize me either.


As I left Kansas City the next day, vowing to return one day for another proper vacation and to perform again, I was overwhelmed with joy and contentment for what I had accomplished that weekend. The fears of being too introverted, of embarrassing myself in front of a new crowd, of feeling alone had passed. I fully immersed myself in an unfamiliar place. Performing in my first out-of-town festival, while not my first time performing outside of St. Louis, was something I’d finally achieved. I knew now that I was an unstoppable force, and that great things were in store for me.

My KCBF Adventure! (Part 1)

The 7th Annual Kansas City Burlesque Festival was a dream come true for me, and I’m going to tell you all the reasons why, starting with a little backstory.

As some of you have probably read, I began performing with the Blackline Mafia fetish troupe in November of 2009. It was also a dream come true. I have a lot of dreams and aspirations, you see. You can read more about my early days of burlesque here. Once I got more involved in the community attending shows and fangirling over the ridiculous amount of creativity, I really wanted to perform burlesque. The very first act I developed holds so much meaning and so much ‘me’, that I have a goal of sharing it with as many audiences as I can. I started applying to festivals with that goal in mind. In 2011, I was accepted into the 2nd Annual Show Me Burlesque Festival with a different act, but still one that held special meaning to me for performing.

When I was a newbie performer, I had a completely different understanding of the burlesque community than I do now. With experience, and a lot of rejection, I have come to understand the nature of being cast in burlesque festivals. I mistakenly thought that if you were good enough to be cast in it once, you would always get in after that. This is obviously a terrible business-model, because one of the great things about festivals is bringing things to audiences they haven’t seen before and may well never see again. So if everyone who was accepted previously still got in, the talent would never cycle out. I completely understand staples and fan favorites, but burlesque is ever-evolving and new talent is constantly emerging. It is one of the many things I love about this art form.

You can imagine my disappointment when I not only didn’t get into my home festival the following year, but none of the out-of-town festivals I applied to either. I didn’t realize this is fairly common. An act has to be the right fit for a show, and as a producer I came to understand that. I got into my local festival as an alternate the next year though. I was placed in a small show-within-a-show which was still a big achievement for me. The next year I applied, I didn’t get in, but I volunteered and still had a great experience. Then came my next big breakthrough. The very first act I ever created, after several incarnations and a lot of workshopping, was accepted into the 6th Annual Show Me Burlesque Festival. I was blown away. The act was still rejected by the out-of-town festivals I applied for, but I was beyond thrilled regardless.

The more I thought about it though, I wondered if my goal of ever doing this act in other cities would happen. I took the next year off from applying to festivals, with all of the uncertainty of my mom’s recovery. I was still able to perform, however, as part of my belly dance teacher’s huge dance number she submitted that was a combination of her professional troupe Exotic Rhythms Belly Dance and student troupe Mosaic Fusion for her show ‘Invocation’. That was yet another dream come true, performing on the mainstage of the Casa Loma Ballroom for Spectaculaire.

I said to myself at times throughout the years “if I don’t get into a festival this year, I’m never applying again.” But the drive to achieve my goals always kept me coming back, even at the risk of rejection. I was over the moon when I was accepted to the 7th Annual Kansas City Burlesque Festival for 2017. Not only was the act I’ve been wanting to perform out-of-town accepted, but the other act I applied with was as well! I couldn’t believe that both my acts had been cast in my first festival in another city! I was seriously freaking out with excitement and anticipation. After nearly seven years I was finally achieving one of my burlesque goals.

When I made my travel plans, I did so with the intention of making this the best possible experience for myself that I could. I knew that if I brought James along with me, as much as I love him, that I wouldn’t get the full festival experience that I wanted. I initially made plans to travel with another performer, but scheduling conflicts ended up with me taking the road trip solo, which was still pretty awesome. I booked a room at the hotel attached to the venue where the festival was being held. It was expensive, even on a discount travel site. I didn’t realize quite how fancy four star hotels are. I put out a call several times to see if any performers in the festival, from my town or elsewhere, would like to share a room with me. Unfortunately I didn’t have a single taker *sad trombone.* I did, however, offer to let the Bon Bons use my room to get ready on Saturday evening since they would be driving in that day and leaving right afterwards.

I set out on Friday morning later than I had planned to, after a panic swept over me for how much I had yet to do. I had pre-packed what felt like half my apartment the night before, but still had more things like snacks to pack the day-of. I set out on the road just after 11am and headed west. I didn’t get much sleep the night before due to excitement-driven anxiety. I was feeling sleepy in the midday sun. I pulled off to get lunch and rest. Just after I was back on the highway, up to full speed, I saw a bird flying erratically in my peripheral and then BAM smacked across my windshield right in front of my face. A white smear indicated the bird was just as scared as I was right before the impact. That woke me up. I guess I could say that a bird sacrificed its life for my road trip.

When I got into KC I was mesmerized. I had only been once before, on a vacation five years ago, where James and I attended a comedy show at Standford’s, a drag show at Missie B’s, and a burlesque show at Uptown Arts Bar. We also went to the KC Renaissance Festival, Coco Keys, and Schlitterbahn. It was a magical vacation. But this trip I wanted to have an adventure on my own. I was certainly having one from the moment I arrived.

After getting checked into the hotel, venturing deep into the maze of parking garages, and finding my way back to my room (which was, hilariously, #1234), I opened the window to see my view: the Liberty Memorial and WWI Museum beyond the lush park, and the hotel pool in the foreground. I found out from the bellhop who brought up my luggage rack (which was ridiculously full) that the pool was heated and open year round. What?! I brought two swimsuits to take advantage of the jacuzzi tub, but I had no idea I’d be able to go swimming. It is seriously one of my favorite past times. More on this later.

I found my way to the Musical Theater Heritage inside of Crown Center where the festival was being held. I actually set a timer to walk there to see how long I had to get to my room and back. This really came in handy later, and even though no one ended up sharing the room with me, I’m very glad I booked my room there. Speaking of which, one the perks of rooming by myself was that soon as I got back, I stripped down and spent most of the rest of the time in the room naked. That is my preferred state. I was incredibly nervous, especially realizing I hadn’t left myself nearly enough time to get ready. Shower, hair, and full-face done, I headed back to the venue to check-in. Once I had my badge and a walk around to see the layout, it dawned on me I hadn’t eaten dinner at all. The show was close to starting and I had just enough time to dash across the street to get a bowl of soup. After I was finished, while washing my hands in restroom I looked up in the mirror to see a bright red stream of blood coming from my nostril!

I haven’t had a nosebleed in nearly 20 years, but some combination of factors (as I would discover the next day, a lack of Vitamin C) deemed it necessary to delay me from the opening of the festival I’d been looking forward to for months, if not years. Several tissue changes later, I decided to embarrassingly find my way back to the show, already in progress. I sat down in the performer’s section, leaving an empty seat between the person next to me, because I was still bleeding from my nose. What a first impression! I explained at intermission to her why I did that, but at least I struck up a random conversation! The reason I decided to leave my lovely husband at home is because, as I told many people that weekend, I am an anxiety-riddled-introvert and often use him as a buffer. If he had been with me, I wouldn’t be forced out of my comfort zone to interact and network with other performers. That is one of the things I love about burlesque festivals, is making those connections and forming those bonds. Friendships are forged in the glittery tornado that is a festival. One friendship I made was with Frenchie Renard. She is a magical creature of wisdom and sass.

Even though I missed the first few, I saw so many fantastic performances during the first show. Another thing I love about burlesque festivals is the diversity of performances gathered in one place. Each festival has a vision for what they want to put on stage, and I’m honored to have been included in this one. Between the shows I had to make two trips back to my room to get what I needed for my act, because one thing I now use is a very heavy restaurant chair. I bought it for acro but it looks nice enough to use for anything on stage. I was even able to lend it to another performer during the show. Backstage I donned my costume and locked myself into the the collar of my yoke. I could feel my heart thumping in my chest and tried my usual technique I’d learned in a workshop at BurlyCon to center myself. The emcee announced me, the lights came down, and my song began…

My First Burn

This note was originally published on Facebook on May 17th, 2016

This is something I probably should have written Sunday or Monday before I forgot a lot of tiny details, but I had too much brain fog to sit down at the computer to do it. Oh well. Better than waiting two weeks, I suppose.

Last year on a float trip James and I rafted with a good friend and heard most of the day about how amazing InterFuse was from her. She was one of many of our friends who kept telling us “you need to go next year. No really, you need to go.” Usually May is a busy month at the retail job I had, and I would only be able to get one weekend off for Show-Me Burlesque each year. This year, however, it was announced in January that our building was closing and all 750+ of us were getting laid off. Talk about a blessing in disguise. Knowing I’d still be unemployed at the time, I went ahead and made plans for InterFuse.

We camped with our Conflation/Ren Faire family at H.O.I.R. Island, the ones who had their first theme camp the year before that kept telling us we needed to go. Staying with a theme camp was definitely a good choice, as there is no way we would have been able to bring absolutely everything we needed in our little car. Having hot meals served twice a day made it feel so much less like camping, and we were stationed right next to the water spigot and bath house which was so very, very convenient. I only needed to use a port-o-potty once all weekend. The She-Wee I tried using was a disaster, as I only practiced with it once before I went. Note to self: need more in-shower practice with the She-Wee.

Since this story is going to be all over the place, I’ll start here: speaking of bathrooms- I have hope for the future! The bathroom/showers at InterFuse were non-gendered. Men & Women are marked out and both sides are for all. On Friday morning James and I shared a shower because we were sharing soap and shampoo, and while the curtain on that particular shower was missing, it didn’t matter. Naked people everywhere, all genders, and I could just shower with my husband to get clean, no judgement, no worries. Being at a burn is a totally different world. I should probably mention the 10 principals here because it frames the mindset that I entered upon stepping into the burn community.

Another great thing about the bathroom/shower house at InterFuse is it’s a place the majority of people go throughout the burn, so if there’s a message you need to get across, that’s the place to do it. The message was clear: Consent. Pictures of people in various states of undress with slogans like “Is she still saying yes? If she is unconscious, she is not consenting” and “self expression is not an invitation” on a photo of someone topless with body paint. My heart soared upon seeing these. THIS. This is how we re-condition rape culture in our society. These posters need to be everywhere in the world, not just here. It was especially important here though, because the event is clothing optional, people can become very intoxicated, and reinforcing consent is needed. The Love Cats did an excellent show about consent that a lot of people came to see, and oh boy did I wish this existed more in the default world. I also wish I had some pictures of these things, because googly eyes appeared on the posters throughout the weekend and made them extra fun.

I only took one photo the entire event actually, the one in this note. Part of me wishes I had taken more, but the immediacy principal really enhanced my experience of living in the moment and not needing to take photos of everything like I normally do. My phone was consistently dying all weekend, we had one back up battery and I found out last night one of our camp mates had several we could have used. Oh well. That’s why I’m writing this note, to share my experience but also to look back on it fondly when I forget most of this in a few months.

Welcome Home

Phrases I kept seeing in the weeks leading up to the event were in regards to coming home. Within I’d say an hour of stepping through the gate on Thursday afternoon, I understood why people kept saying “Welcome Home.” Even while people were still setting up their camps, I was completely blown away by the engineering, ingenuity, creativity and hard work that went into everything. It takes a village to build one. I realized halfway through the weekend that InterFuse is the intersection of all of my lives, groups, and passions in one place. I really am home there.

I knew of good chunk of people outside my camp who were attending, but as the weekend went on I kept seeing more and more people I knew who I had no idea were attending. I saw people from conventions, Ren Faire, the burlesque/circus arts/performing community, fetish community, The Crack Fox/Shamless crew, and of course the fire spinners. I realized something while I was there: burns are where the revolutionaries come to play! I can see a clear correlation between the Burners and the Berners, if you will. These are the people who are trying to change our country and the world. Some of them, anyway. I’m sure there were people there who couldn’t give less fucks about anyone but themselves, though I didn’t really encounter anyone being an asshole.

A burn is what you make it, I also learned. In the weeks leading up to InterFuse I prepared as much as I could for something I had no idea what to expect. I printed the 22 page “schedule” of events that, much like Conflation, started on “ish” time and may or may not actually happen. You’re building a city in the middle of the woods, with only the stuff you brought (including electricity/fuel) and any number of things – including severe weather – could compromise your plans. I made it a point not to have FOMO (Fear-or feeling-Of Missing Out) at all this weekend. There are things I wish I could have experienced and didn’t, things I experienced and wish I hadn’t; but I’m not upset about it, and all in all I had a great burn.

My Adventures

There are so many things to do and see and so many people to meet and talk to that everyone’s going to have a completely different experience. One thing I’m glad I didn’t do is trip shrooms. I had wanted to and planned to, but as the event drew closer and I realized how many things I wanted to experience I knew I needed to keep my wits about me. I was only sober on Saturday since I was fire spinning. But that didn’t keep me from being dehydrated as fuck on Sunday. Since it was much cooler on Saturday and I wasn’t drinking, I did not stay well hydrated because water was an afterthought. I felt hungover for most of Sunday for like, no reason. Oops. Lesson learned.

When we first arrived on Thursday we set up, helped our camp get set up and then wandered around getting our bearings. The map was mostly not needed, nor did we bother carrying it with us. It was kind of fun finding things on our own instead of looking for it on a map. I honestly don’t remember that much of Thursday, probably because we were sleep deprived going in with staying up late packing the night before. It was rainy when we left St. Louis, and became sunny and gorgeous as we traveled down 44. In the late afternoon I stretched on my yoga mat in just a bra and panties in the grass behind our tent, knowing I’d need it for the night of walking that was ahead. I didn’t expect the rapid temperature drop after sunset, but now I know better for next time.

I also now understand the appeal of costumes, especially at night. The more you’re wearing the better to stay warm! Thank goodness for bonfires. Next year, less clothes and more costumes. Thankfully, there were costume pieces abound at the various clothing swap camps where you could take or leave things at will. Principals related to this are gifting and decommodification. There is no money exchanged except for ice sales at burns. You buy everything you need outside and bring it. Gifting is totally up to you, there’s no barter or trade for anything. That’s why it only exists for a few days, really. That’s not sustainable in the long term.

On Friday during the day it was hot and sunny so I decided to walk around topless, slathered in sun screen, with pasties covering my nipples – not because I cared about anyone seeing my nips, but because I didn’t want them to get burnt! It was great seeing so many people in various states of nude or not. Radical self-expression! I am glad that in preparing I read and saved all of the lists of things veteran burners suggested bringing. “Bring a hat. If you don’t have at least one exciting piece of headgear you will be disappointed.” Hats are SO not my thing. But I found this random panda head hat with long mittens attached and was so glad I brought it to wear at night. Kept my hands and head warm and looked adorable. I wore a big floppy hat (if you can imagine) during the day to keep the sun off my forehead and neck. It did mess with my peripheral vision though, ha.

Friday evening before the sun set there were threats of hail and thunderstorms in the area. A good chunk of time was spent prepping for that, and my choices for make up and wardrobe changed with the impending threat of rain. I brought rain boots and ponchos and ended up not needing them at all, the storm had passed us right by with only a sprinkle. The sun set while we were watching the burlesque show and I was fucking cold walking back in a sun dress and rain poncho to get dressed in layers for the night. I was drunk by that point, since the threat of rain had squashed hopes of fire dancing near camp. Wandered around exploring all the different parties being thrown, and seeing which costume pieces glowed at the various rave-like camps under black lights.

When Your Burn Goes Badly

Friday night after we wandered back to our camp, we settled into the cuddle cabin. Drunk and high, having lots of inner monologue, I decided to address an elephant in the room with my husband. It led to a deeply intense conversation about our relationship, where we had been, where we were going and what needed to be done to get there. This is probably not a surprise to anyone who doesn’t know, but James and I are open and kinky. I’m really not the best at communication, so my that has put snags in our relationship before. After talking for almost two hours we decided to go to bed. Both in a weird, not-good head space. Not ideal for your first burn.

Waking up Saturday morning sore and cranky was not fun. I texted my sister to see if she’d heard anything from the hospital about our mom, and it was not any good news. It made my bad head space worse, and not realizing I was also pms-ing, I started to cry. James had a migraine at this point, and while I tried to stretch it out on my yoga mat, he desperately needed to find medicine that was located in his backpack that had gotten mooped the night before. It ended up being taken from our camp to lost-and-found for some unknown reason, and freaking out occurred because it also had our car keys. I was oblivious to all of this and wrapped in my own head trying not to have a total breakdown. I thought he was sleeping off his headache so I left to go to Sanctuary so I could cry it out there and not bother anyone. They were very helpful and after a bit I felt better and left to hit the bathroom before the mandatory meeting for the fire performers and safeties. I ran into him by the bathrooms, we exchanged unpleasant words (I was an asshole and regretted it as soon as the words left my mouth) and he stormed off, saying he was leaving. Once you drive away, there’s no re-entry.

I went to the meeting and told my camp mates that me and my stuff might need a ride home. I was really scared but knew if I didn’t attend the meeting I wouldn’t get to do one of the things that I really, really wanted to do for my first burn. A good friend said to me about the situation to check the following things if you’re having a bad time at a burn: Am I hungry? Am I thirsty? Am I tired? Am I lonely? Very sound advice. Self care is important in general, but moreso when you’re in sensory overload Just then she spotted him coming back from the parking lot and I was thankful he hadn’t left. We talked, I massaged his shoulders to release the tension causing the migraine, we hugged, apologized and both felt a lot better. Those few hours of being in a fight with my husband were absolutely miserable. It could have gone a lot worse than it did, but what came out of that experience is going to make our relationship stronger in the long run, and for that I am extremely grateful.

You Can’t Always Get What You Want, Sometimes You Can

Like I mentioned before, there are so many activities, people, art installations, and things going on that everyone has a different experience and it’s impossible to experience everything. We got to watch the naked relay together, which was short but hilarious. Then randomly an aerial arts show popped up right in front of us and we got to watch that until we decided to wander off and do something else. We found Ying Yang camp and there were people in front of it doing acro yoga, and I asked if I could do a rope suspension. It’s been years since I have done one, and it was one of the things I really, really wanted to do at InterFuse. I had never been suspended with hemp before, since I used to find it very uncomfortable. I was fully clothed, and it actually felt amazing. It turns out I already knew who the person suspending me was, in passing, online. I suspended for no other reason than to prove to myself that I could after all this time. I wasn’t great at it before, kind of a whiny bitch about it actually and pretty scared. But as soon as I was up in the air I knew I was more than capable. I am a lot stronger than I was a few years ago, and I could have hung up there even longer than I did. I got into a very zen head space and relaxed into it, feeling totally at peace. When I came down, a couple of guys who I had no idea were watching thanked me for the suspension as they enjoyed watching it. Of course I gave credit to the rigger, it was all him. I just dangled, ha. With that, we moseyed back to our camp to get ready for the night’s festivities. THE burn.

I had signed up for volunteering because that is a thing that everyone does. Everyone volunteers, or should. Communal effort is another principal. I had fun doing MOOP sweep Friday morning, but I was super excited about volunteering for the pre-burn ceremony. One of my favorite fire performers was the organizer for it, which made it that much better. She did a great job telling us what to expect out on the burn field, warning us about the amount of accelerates we’d be spinning fire near in the effigy and all that stuff. I don’t think anything could have prepared me for the experience though. I was one of dozens of people performing for a crowd of hundreds backed by a very tribal, rhythmic drumming. One friend told me later that I looked absolutely blissed out. As I passed my friends in the crowd people were shouting my name and it made me smile. It was totally pitch dark with nothing lit but tiki torches and other fire spinners as my guides around the circle. After my fans I went around a second time with my palm torches, which one friend told me was a nice contrast to all the big fire – little lights dancing and flitting about. I danced and had so much fun. I got to be a part of something magical.

Then the effigy. Some of the fire crew were disappointed with ignition and how it went down, but it was my first ever and I was extremely impressed. This year’s theme was Fort Frenzy, and so the effigy was a giant blanket fort. A couch, loveseat, and chair made of wood, a giant lamp in between them, and a “quilt”, one square of which I painted. I saw the quilt over the livingroom set earlier in the day, but it was not burned. Wonder what happened to it. Once the effigy fires were raging, everyone was waiting with anticipation for it’s collapse. I didn’t understand why. I just figured people wanted to move in closer to get warm by the fire. Nope. Once the perimeter was dropped, hundreds of people came in to run wildly around the fire. I had no idea this was even a thing. I think they intentionally don’t tell the virgins so they can experience it for themselves. Or maybe not. But now I know, and now you do, too. We waited a minute or so and decided to jump up and join them, but by that point most people had stopped running. Only closest to the fire were people still making their way around, and it was very, very hot close to the fire. I had to step out and finish my lap on the outside of the crowd.

After the effigy burn I changed back into non-firesafe clothing (next time bring a long cotton undershirt for the pre-burn) and headed out into the woods for some much needed party time. We danced at all the sound camps, which were like giant dome jungle gyms covered in tarps. I said “fuck club hopping in Vegas, we can club hop right here!” We were witness to a cock and ball pinata being busted and won a tiny bottle of liquor. At our camp we ate s’mores and hot dogs, traditional camping food. I’m sure we did lots of other things that night which I frankly don’t remember right now, but it was fun. I’m sure there’s lots more that I’ll think of later.

The stars were amazing to look at, and the bonfire burned strong into the night. I had an overwhelming sense of joy and peace that I was able to have such an incredible experience. Welcome Home. IDoMyOwnScience

Groundhog Day

This note was originally published on Facebook on August 31st, 2016

Today marks one year since my mom’s AVM surgery. Some of you are familiar with this story, others are not. In March of 2015 she had an MRI that revealed a congenital tangle of veins in her brain. Having been put on blood thinners for a heart stent and a carotid artery surgery following a mini-stroke that prompted the MRI, this increased the risk of it bleeding and surgery to remove it was recommended.

What was supposed to be a five hour surgery turned into almost 12 hours. We got updates every two hours in the waiting room, as the day turned into night, each update more worrisome than the last. Finally, she was out of surgery and in recovery. One of the surgeons came to speak to us. They told us the AVM was far more complex than imaging had shown, and ruptured during surgery flooding her brain with blood. They had stabilized her they said, but she wasn’t out of the woods yet. We slept in the waiting room: a lounge with couches, TV, and kitchenette designed for the comfort of families of patients with hours- long procedures. The morning of her surgery, a family had just woken up and was leaving wearily, as we entered the room cheerful and full of hope. The next morning, we were that family.

Our mom was in a coma for almost two weeks. She was put on a feeding tube and trach, both of which she still has a year later.

Going into this, she expected to either recover, or worst case scenario not come out of surgery. The risk of the actual outcome was uncertain, and unexpected. As such, she did not have an advance directive, power of attorney, or living will. My sister and I have been living in a nightmare of only being able to guess what we think is best for her. It feels like sometimes every decision we have made for her has been the wrong one. The amount of guilt and regret we feel weighs down on us every single day.

My aunt had come up from Mississippi to be with her, to talk to her while she slept, motionless. Every slight movement was reported: the slightest eyelid flutter, tiny twitch of the foot, gentle squeeze of the hand. She stayed at my mom’s apartment at night to look after it, and came back to the hospital every day. While she was here with us, her son Steven had come back home. He met up with old friends, and died of a heroin overdose on September 11th. My aunt returned home. I was in Pensacola Beach at the time, in a friend’s wedding the next day. There wasn’t much I could do at the hospital, so I was there. I flew back that Sunday, went to work Monday, and drove with James down to Biloxi on Tuesday for my cousin’s funeral. My mom was starting to regain consciousness, and we all agreed not to tell her for fear of setting back any progress with heartbreak.

After 18 days in the ICU she was moved to a transitional hospital where her speed of recovery astounded everyone. In just a couple of weeks she was able to take a few steps assisted in physical therapy. They were working on capping her trach so she could speak again and eventually have it removed so she could eat again. The speech therapist rushed her though, fed her pudding when she had choked on water the week before and two days later she was unresponsive with pneumonia. It was the day she was supposed to be transferred to acute rehab to eventually come home. She could have recovered to the point of walking and talking and eating again. But this was the turning point where she would not. I blame myself every day for allowing her to go to that horrible place.

Later that month we made the difficult decision to end the lease on her apartment and put all her belongings in storage. We couldn’t afford the rent on a home she would never be able to come back to. We could only do so much without power of attorney; and without being able to speak or write, she was unable to sign one in her condition. We had to hire a lawyer, and go to court to deem her incapacitated and become her legal guardians. Because she had a retirement account, we were also forced to become her conservators in charge of her finances. In the midst of this, her FMLA expired after 12 weeks at the end of November and she was terminated from her job while in the hospital. We were suddenly responsible for hundreds of dollars a month for her insurance to continue her care.

Around the holidays she was moved back out of the ICU after having a shunt placed in her brain, as the scar tissue made it so that her cerebral spinal fluid could not be reabsorbed, filling her cranial cavity with fluid if not drained. She has never been the same since the shunt surgery. It’s hard to describe, but while she’s herself sometimes, other times she isn’t. Another setback was that she kept getting infections while she was in a new transitional hospital, and was moved into isolation. I have had to wear a plastic gown and gloves to see my mom every time I visit her since December. Because of the constant infections, an infectious diseases doctor recommended we consider hospice if she did not stop getting them within three months. She did stop getting the infections after being moved to isolation and that doctor is an asshole.

Holidays in the hospital came and went: Thanksgiving, her 59th birthday, Christmas, New Years. In January my whole world was turned upside down again when it was announced that my job of almost 12 years was ending. The company had posted poor profits the previous two quarters and decided to close our entire office of 750+ employees. I’d been given more than 60 days’ notice, however, my intermittent FMLA was in effect for an entire year. This meant if I started a new job right away that I would not be allowed FMLA for six months to a year. This is why I have remained unemployed since March, and have turned down most people’s gracious offers to help me find work. It won’t help me if I get fired from jobs constantly for unexcused absences. I might as well use my unemployment insurance. It was a blessing in disguise, I hated that job anyway; but the impending layoff certainly added to my stress at the time.

My sister and I have been visiting her every week, or nearly every week, up in St. Charles. It was only a few minutes from my work, but after no longer traveling out that way every day it has become harder and harder to make myself leave the house some days to go. She can only mouth words, sometimes I can understand them and sometimes I can’t. The initial surgery seemed to have damaged the optic nerve on her right eye and she can’t see well enough to read or write most of the time. Communication with her is done through her gestures, our series of questions, and with lots of frustration and patience on both sides. At some point she became awake and aware enough to realize what was going on and wanted to leave the hospital. She has tried, and succeeded a few times, to pull out any of the things attached to her: catheter, IV, feeding tube, and trach. She had to be put in restraints with her wrists strapped down. She somehow kept getting out of them and still pulled things out. Very dangerous since she has no way to communicate if she is in distress. The nurses nicknamed her Houdini because they could not figure out how she was escaping her restraints. It’s funny, but a horrible thing to witness your parent going through.

The staff where she has been the past nine months is amazing. Insurance, however, is a horrible underhanded thing. They will only pay for certain therapies if she is making progress. If she hits a plateau, as she does often, she is dropped from therapy five times a week to only once or twice. She will seem to get better, then get worse, then get better again. It’s been an unimaginable roller coaster seeing her progressions and setbacks. The biggest one lately has been chronic respiratory failure. Once you have been on a ventilator for more than a few days in the ICU, your chances of ever living independently from one decrease. It definitely doesn’t help if you’ve been smoking for 40 years and have untreated COPD.

On Mother’s Day we went to visit her. She was almost as unresponsive as she was in a coma. All she could do was lift her eyebrows slightly to acknowledge us. We were quite upset. The next day we each received a phone call from the hospital. Earlier in the day my call was to tell me she was back on a ventilator. Later my sister’s call was from her pulmonologist telling her mom would likely be on a ventilator permanently, and that we “needed to make a decision.” Thinking he meant we needed to make a decision immediately, we rushed up to the hospital expecting to see her motionless as the day before. We were shocked to see her sitting up, chatting, alert as ever. The respiratory therapist had found her that morning, barely breathing and saved her life. She was retaining so much carbon dioxide that she was barely conscious, and the ventilator had brought her back from the brink. It turned out the pulmonologist had meant a decision long-term, and was also an asshole for telling us “it’s too bad you’re not willing to let her go.”

It’s been pretty steady since then. On the ventilator for 12 hours, off for 12 hours. She does well in therapy, she progresses, she plateaus, and she backslides. The cycle continues. Until a few weeks ago.

Since the insurance kept refusing to pay on some days, the hospital needed her gone. They gave her another shot to get off the ventilator, and she has so far succeeded. Then they gave her a shot getting off the restraints, by having someone sit with her for a few days constantly to watch her. She did well on that, too. Yesterday we got a phone call that she was being discharged to a nursing home today. A place we had never been to nor approved her to go. I was furious. I knew that having her moved to another facility meant upheaval for her. It also means she will never progress to the point of coming home. This is what we have been dreading for some time now. We know her best chance is not to ever drive, or work, or live independently again. Our best hope for her is that she is eventually able to eat and speak again. Hopefully walk, too. That would be amazing.

I won’t even get into what a nightmare the financials have been. We didn’t know at first that we would have to dump her entire retirement savings just to get her long term care. The more we talk to people older than us, the more we find out that this is absolutely typical. This is what happens to people when they are no longer able to take care of themselves. What we learned today is that saving for retirement is basically a joke unless you’re in good health and plan to stay that way long after you stop working. Don’t even get me started on how expensive and completely unhelpful our asshole lawyers have been.

Today was already an emotional day for us, being the anniversary of her surgery, without being forced to go up to a nursing home and sign over a check for thousands of dollars, then visit our mom and say “you’re being moved tomorrow! Aren’t you so glad you’re getting out of the hospital?” knowing that she is not very accepting of change. My mom and I definitely share that trait.

So begins a new chapter. No more gown and gloves to visit her, she won’t be in isolation. She won’t have a respiratory therapist making sure she’s not backsliding off the ventilator. No infectious diseases doctor or dedicated wound care nurse. Let the chips fall where they may, so to speak. We’re literally rolling the dice and have no other choice in her care at this point. It’s a nice enough place, it’s not depressing. The staff is friendly and seems very helpful and knowledgeable. But it is a lower level of care. I just don’t feel prepared to deal with all this. I don’t think I ever would have been prepared. She is literally living her worst nightmare and I am absolutely powerless to do anything to help her recover from it. She told me once that it was like Groundhog Day, I’m guessing since every day runs together exactly the same as the one before. I couldn’t imagine being in her position, and not giving up hope. That is all we have to cling to sometimes.

I’ve learned so many lessons from this, which is maybe another note for another time. It’s been a long day and I’m tired. I started writing this before I left to pick up my sister, and finished after I got home. I just want to end this note by saying thank you to everyone who has lent an ear, or a shoulder to cry on when I’ve needed to vent, those who contributed to the fundraiser way back when we had no way to pay for our mom’s insurance, all those who helped us move her apartment into storage, anyone who has given us advice or shared their experience with similar situations that we might glean some insight from it, and my amazing, supportive, wonderful husband who has endured every one of my mood swings, random breakdowns, and uncalled for attitude towards him. I don’t know how he does it, but he has been holding me together.

I am, above all, incredibly grateful to my sister. No one could possibly understand what either one of us is going through except the other. As I have been saying for a year, if there is any silver lining to all of this, it’s that her and I are close again after being somewhat distant from each other for years. She’s is an amazing, strong human being and I admire her so much, as I always have. I know my mom continues to be proud of us, even if she isn’t able to say it out loud.

Is this thing on?

Can I just say that I do not celebrate my mental illness? I own it. I accept it. I abhor it. I understand it. I know that I would not be who I am without depression and anxiety (and whatever else my brain expresses through various neurotransmitters or lack thereof.) I went to college for psychology. I wanted to be a clinical psychologist and start my own practice. I grew up with a repeating pattern wallpaper in my room with the characters from Peanuts, Lucy in her ‘the doctor is in’ lemonade stand, and Charlie Brown, seeking advice for five cents. I’m not sure if this influenced my decision, you know, that one you have to make before you turn 18, whether to go to college or not. I decided I wanted to go to school for another 6-8 years at least, to break into the field and then get my doctorate. Thought I was a lot more motivated and passionate about it than I was. Friends always said I gave them great advice. I like giving people an insight into other perspectives, and I enjoy the same. But I wonder what I would have become if not for my depression and anxiety.

I don’t hide the fact that I was suicidally depressed from the age of 12 (a year you will hear about a lot in this blog, so please don’t be too weirded out) up until the age of 28. I went through a transformation. One you’ll read about in another entry. Suffice to stay, the self-destruct button in my brain is no longer there, constantly nagging at me to push it. I did a lot of stupid shit for most of my life because I didn’t have the desire to live past a certain age. I figured when it got to that point that I didn’t want to be around any longer, I’d just choose to leave. Hunter S. Thompson, Robin Williams, they chose to keep themselves from falling into a point of no return. So I made a lot of terrible choices. They led me terrible places.

I’d like to think I’m well past all of that. Another time, mostly forgotten save the people who remember me from the days of Yahoo Chat. Oh yes, I’m one of those people. But if there’s anything I’ve learned it’s that I wouldn’t be where I am now if it weren’t for where I’ve been. All of my choices, good or bad, everything out of my control, has led me to where I am now. Frankly, it’s fucking fantastic. Except for the anxiety and to a lesser extent, depression. There are still so many things I could be doing, or doing better, if not for the crippling and constant fear of failure. I’m a perfectionist and a procrastinater. In the few months that I was able to afford to see a therapist last year, I learned that a lot of perfectionists are. We get so caught up in the details of and wanting something to be perfect that we have a difficult time even getting started. That’s one reason I feel like learning programming has been such a challenge for me.

But I still want to be and do and see all the things. I feel like I have so much of myself to share with the world. I don’t know why I feel like I need to share myself. I’ve always been a very giving person. Which is why I’m a submissive. I can also be incredibly selfish, but I’m working on that. I’m a work in progress. My husband James is a big reason for that. He makes me want to be a better person. I’m more motivated now that I ever have been. I just went through another rebirth in my life. Like the phoenix, every few years I am reborn from the ashes of my former self. Big life changes affect me, dramatically sometimes. “Always learning, always growing” is one of my mantras. The people who cease to learn and grow, they are the ones I pity more than those who overcome adversity. Because it is on the other side of a challenge that we learn from it. Those who face no challenges, no adversity don’t continuously evolve into a better version of themselves.

I sometimes fear that if I lost my anxiety, I wouldn’t have enough fear to motivate me. That I would just be content with the bare minimum and not worry about trying to do better. Because I’m also really fucking lazy. I acknowledge that. I am flawed in a lot of different ways. For example, nearly every sentence begins with the letter “I.” Clearly I’m conceited and not a very good writer. People have told me they enjoy my writing, however, which is why I decided to write this blog. I enjoy writing about my weird life and as long as people enjoy reading about it, I’ll continue to do so.