[CN: Ableist slur, illness, mention of suicide]
Today I chat with Ania Onion Cebula, who blogs about sexuality, feminism, atheism, and disability justice. Her and her partner Alex run the blog Alex and Ania Splain a Thing. Today we will be chatting about her struggles with arthritis and Chron’s disease, medical marijuana, and what able-bodied people can do to be better allies for people with disabilities. Enjoy the show!
Today I chat with Ania Onion Cebula, who blogs about sexuality, feminism, atheism, and disability justice. Her and her partner Alex run the blog Alex and Ania Splain a Thing. Today we will be chatting about her struggles with arthritis and Chron’s disease, medical marijuana, and what able-bodied people can do to be better allies for people with disabilities. Enjoy the show!
Transcript provided by Marvin:
Trav: Welcome to the Bi Any Means podcast, a place where social justice and humanism meet. Hello, and welcome to another episode of the Bi Any Means podcast, the podcast companion to bianymeans.com. I’m Trav Mamone and today I will be chatting with Ania Onion Cebulla who blogs about sexuality, feminism, atheism and disability justice. Her and her partner Alex runs the blog Alexandania.com, also known as Alex and Ania Splain You a Thing. Today we’ll be chatting her struggle with arthritis and Crohn’s disease, medical marijuana, and what able-bodied people can do to be better allies for people with disabilities. Enjoy the show.
My guest for today is Ania Onion Cebulla who blogs with her partner Alex at Alexandania.com. Ania, thanks for joining for me today.
Ania: Thank you very much for having me.
Trav: First, I want to ask you about your background. Did you grow up religious, and then later de-convert?
Ania: Yes, actually, I was very involved with the Catholic Church growing up, and so was my family. In the first church back in Saskatchewan, my father was the organist, and my mother ran the choir. I was actually the first female altar server to ever serve. I got the … the priest agreed to let me do it for my first communion. When I was baptized, I was baptized by three priests including a bishop. I had my reconciliation and my first communion a year earlier than anyone, and had the whole church to myself because we were moving and they wanted to make sure I had it in the church that I grew up in. Then we moved to St. Catherine’s my father was the organist and my mother was the cantor, and then actually later when my mother got pregnant with my sister, I took over as cantor, and I was all 12-years-old. I was basically, there every Sunday cantor at my church from about the time that I was 12-years-old until I went away to university when I was 18, and actually every time I came back, when I came back for the summer, or I came back for a visit, I would go right back to being the cantor. I would lead the Christmas songs including the main midnight mass.
I was big within the church. I was super involved. I was confirmed by an archbishop from Rome who was actually the Primate to Poland on behalf of Pope John Paul II, really, really involved with our church. The funny thing is even despite all of that I always had a history of questioning as well. I was always a scientist. My family has a very academic background and my always encouraged my interest in science. The Catholic Church prides itself in being one of the Christian faiths that’s actually pro-science. They don’t actually see the cognitive dissonance in it as much as other Christian faiths do. It was really interesting because I remember we used to … my parents used to publish ascending newspaper called Ewangelie dla Ani, which literally means The Gospels for Ania.
It was a little magazine that they did, which had gains in it, explains of the different passages of the Bible, specifically what was the gospel for that week. They published it every week not just in their own church but they actually sent out to most of the Polish churches in Canada and the United States as well I believe but yeah. Very involved, anyway for the Ewangelie dla Ani the reason I mention is because they used to take the younger kids down into the church basement, and this nurse called Siostra Frederica, which means literally Sister Frederica would take all the kids downstairs and we’d work through this Gospel. I remember one time the story of Jonah came up, and I think I might have been all of four or five years old, and I was obsessed with whales. When I heard this story about a man being swallowed by a whale, I was, “Wait that doesn’t make any sense. The only kinds of whales that would basically try to eat a whole human would be one of the smaller whales with teeth, and they wouldn’t really be able to swallow Jonah whole. If it’s one of the ones with baleen plates then they wouldn’t really go after something that big, and for that matter, why didn’t he get digested by the stomach acid, or why didn’t he drown? There’s no air inside of a whale
I was asking all these questions, and the nurse was just looking, sorry not the nurse. The word for nurse and nun is the same in Polish so sometimes in English I get those two mixed out but yeah. I remember she was so upset, and told me to stop asking questions because the devil could ask questions to, and I was all of four-years-old, and I was just really confused because I really liked whales. I had a couple of times where actually I had somebody yell at me the devil can quote scriptures too growing up even though I was very much a practicing Catholic.
I got to university, and I started de-converting in part because of my interest in gay rights because I had this really good friend who was gay in my first year but he was also Catholic and we used to go to church together. I was really surprised that he walked out halfway through the sermon once, which was another one about how it shouldn’t be gay marriage, and it shouldn’t be civil rights. Gay marriage had just been legalized in Canada two years before. They were still talking lot about it at the pulpits especially since it was a new election coming up, and there was some suggestion that if the Conservatives won, they might actually take it back. That was going on in the pulpits, and I remember I got home, and I couldn’t find my friend, and I was really worried. I finally found him in the bathroom, and he was basically sitting on the floor of the bathroom just balling his eyes out with another friend basically hugging thing them, talking about how he might as well just end it all because he was going to hell anyway because of something he couldn’t change. I remember I had never in my life been so angry at religion than in that moment because there I was staring at my friend who was one of the nicest people I knew, who honestly did more for people than other Catholic I knew.
He was on the ground hating himself, and for what? For the fact that he happened to fall in love with people who identified as the same gender as he did, and I couldn’t wrap my eyes around it. I was just looking at it, and I said, if this is what God is I want no part of it. I remember what actually happen, I still continued going to church after that because I went every Sunday in my first year, and I remember I was struck going back to church after that how for the first time in my life I didn’t feel the presence of God walking into church. I remember so many times sitting there, and I would cry because of that. I remember talking to my parents about it, and they referred to it as crossing the desert. They said that it was perfectly normal, and that every good Catholic went through it. That you crossed the desert, you had to face your moment of doubt and then you come out the other side a stronger believer. That didn’t happen.
The more I questioned, the more I moved away the normal concept of organized religion I went through that whole spiritual but not religious phase. I went through the whole I believe in a God but God is love stage. At one point, I literally believed that God was literally the spark of life that existed in all things and that created the separation between what was life and what wasn’t.
Trav: Me too.
Ania: When I studied … you too. I love that right. It sounds so deep until you look deeper into it, and you realize that that’s just a load of crap. Sorry. No, actually more getting involved in science and find out that the difference between what is living and what isn’t living isn’t nearly as clearly defined as we think it is. That there’s a lot of … it is and it isn’t. you can look at something and just to an extent know that it’s alive and it’s not alive but there’s this whole intricacies even within that and then I remember at some point it evolved into more string theory as God wasn’t that … it was a spark of living. It was literally everything that connected all of us to everything else. Literally, string theory is God that the strings that connect us all that’s God.
Trav: I used to believe that too.
Ania: Then Alex asked me a question in the very beginning of our relationship that bothered the heck out of me. Which was…
Trav: You can say fuck, go right ahead.
Ania: Okay, I didn’t know. I thought I’d just double check before I continued. It bothered the fuck out of me, and it was basically does it have a consciousness? The more I thought about it the more I realized that it doesn’t make sense for it to have a consciousness, and if it doesn’t have a consciousness then why does it have to be supernatural? Why does it to really have to have a name ascribed to it and for that matter why I’m I trying to name it anything other than string theory, which is a perfectly valid theory that already exists? I remember I just had this moment where I think we might have actually been in the middle of dinner and I was just thinking through it or something, and I think I just said, “Fuck, I’m an atheist,” and I think she just looked at me, smiled, and just kept eating. Like she might have said, and just kept eating, and that was it. I realized I was an atheist. I went through my period of just identifying as a secular humanist, and was actually finding as I came out to my parents as a bisexual, atheist studying sexology at Easter. [inaudible 00:10:49] just totally unplanned just not really planning on it but things just kept coming up, and there was political reasons for me to come out at that exact moment.
It was also actually during the elections. I’d taken all my friends to go vote against Harper. It was an interesting visit home but yeah and lo and behold, now I’m an atheist and an outspoken one at that.
Trav: When were you first diagnosed with arthritis and Crohn’s disease?
Ania: I was first diagnosed with arthritis in 2006, which was actually my second semester of my first year of university. My real problems with my legs however started later that summer. I was re-diagnosed all over again with Psoriatic arthritis at that time and I’m saying it that way because despite a diagnosis, and knowing that I already had arthritis it took me over a year to get doctors to figure out that that’s what was going on with my leg. Frustrating. I was actually diagnosed by a nurse with exactly what the problem was about a year before any doctors finally figured it out and got their shit together. There’s a reason I trust nurses a lot more than I trust doctors. They’ve consistently had their shit together more.
With Crohn’s disease, I got diagnosed in 2008, after a period of about a year of dealing with symptoms that we just had no idea what was causing them. Again, I got diagnosed before I got officially diagnosed a couple months earlier this time by a doctor who was yelling at me for having Crohn’s disease before I got diagnosed or had any idea of what was going on. It was actually pretty funny. I was on medication called Enbrel, which is still an experimental medication but has some great results for patients with psoriatic arthritis. It even has this one thing that nobody can talk about because it’s technically, physically impossible but it seems to happen, which is that your cartilage seems to get a little plumber, which suggests that it be growing back but that’s no possible so how does it happen?
I was definitely getting mobility back that I haven’t been getting back since going off of it but it also has unfortunate consequences that if you have Crohn’s disease it can unfortunately put it a little bit into overdrive or set up a flare. If you are like me and you didn’t know you had Crohn’s disease then unfortunately it can make the studies look like the drugs game me Crohn’s disease, which is not exactly something you want happening if you are test subject for a miracle drug. I didn’t know. I had no idea that I had Crohn’s disease. When i had my endoscopy, they hadn’t found anything, and they had never gotten around to doing a colonoscopy me even though they were supposed to have. There was no indication that I had but locking back, I had had symptoms from a very young age. We just didn’t know that that’s what they were. The medication sent me to overdrive, and I ended up with a fistula, and I had to have a fistula surgery.
When I had a follow up appointment with a specialist I asked her about whether or not I had to go off my Enbrel before I had my surgery, and she started yelling at me, why didn’t you tell me you had Crohn’s disease? I was just locking at her going, “What the hell are you talking about? I don’t have Crohn’s disease.” She starts telling if you have a fistula, you have Crohn’s disease, you should have told me, and I’m like, I don’t know what you are talking about. I have no idea what’s going on here, and I’m just crying at this point because I have no clue what’s going on. I thought I was just having a surgery for a thing that happened, and now I’m finding out that I might have this horrible disease where the only time I’d ever had it about before was about somebody who spent their entire life in the hospital. I don’t want this disease. What’s going on?
I remember I got back into the car with my dad, and I’m balling, and having a panic attack like an actual, I can’t breathe panic attack. I think he was debating turning around and driving me back to the hospital just to see if I can get some air or something and he finally just calls a friend of ours whose a nurse and says, “What the hell is Crohn’s disease?” she starts explaining it over the phone, and at this point I’m incomplete. The more she starts talking the more I start calming down because I realize that people who have the disease that I just didn’t know had it because it was never talked about.
I figured out that maybe it’s not this horrible, horrible thing that I was expecting and then I manage to go into flat out denial where I told myself I don’t have Crohn’s disease. She’s wrong. She was upset. She has me confused with somebody else. I don’t care. I don’t have it. Then for the next several months, I was dealing with a bunch of symptoms, which were later confirmed to be Crohn’s disease. When they actually came out and they said you have Crohn’s I wasn’t even surprised by that point. I had it in the back of my head of you know what this is. You just want to admit but I’m like nope, nope, not going to say it, not going to say it until the doctor tells me, and the doctor told me.
Trav: How did your illness affect your college education?
Ania: Pretty profoundly actually. When I started, I was in biomedical sciences with intentions of going into medical school. My plan was to either become a reconstructive plastic surgeon or some form of brain surgeon. I also had a real interest in diagnostics and a lot of other stuff up until that point. I’d even taken classes on hands pathology when I was in high school. I was really into the whole doctor thing. I used to watch medical shows obsessively, and just watch surgery and just do everything I could. My friend and I used to go to the hospital to see if we could watch the doctors and stuff like that and when I ended up having to go on biologics for my arthritis, a lot of people started having serious conversations with me talking about how I really need to consider my career because chances are I’m not going to have the spoons. That’s not the word they used but I’m not going to have the spoons to be able to go through medical school.
It was always that implication as well that if you are on immunosuppressant’s, which is what biologics basically are then working in a hospital around sick people is probably not the best idea. At first, I was still planning on going back. I remember even though my leg issue started in my second year I went back to do biomedical sciences, and I was doing English as a minor, which I loved. I went through most of that year walking with the cane, and then eventually actually needing to use a wheel chair as well. My final semester about a month before the semester ended I had to drop all of my courses and go back home because I completely lost the ability to walk on my own. That was intense. I was doing well in my classes. I had put in a ton of work. My professors were really sad to hear it because a lot of them really liked me in my class, and that entire semester went completely to waste because I couldn’t finish the last month.
That was really rough because I meant I had to go through second year again. It meant that I was already delayed but it was with starting biologics and with this intense thing, that I was going through I realized that I really did have to rethink. I realized that I wanted to switch to English as my major. Unfortunately, the school at first wouldn’t let me switch. I had to go through another of bio medical sciences. I did actually three years of a four-program in biomedical sciences. I also was doing English minor at the time. I was about to get credit for it as my minor English degree at the same time. What would have been my fourth year I switched to English, and basically, restarted a whole new program? That was fun. Throughout it all, I went from being the person who never missed a class to having to skip a significant portion of my classes because I was too tired, in too much pain or just to tick to go to class.
The year that I was diagnosed with Crohn’s I had to go back to the semester about two weeks later because I had to delay in order to get medical tests back home in St. Catherine’s. My professors were actually all really, understanding, and they were able to send me a lot of the course rec, and I was able to buy some of the textbooks at the university that was in my hometown, so that I could still keep up with the work. I was basically doing a prep for a colonoscopy at the same time I was doing my first week of Latin homework having completely self-taught myself the entire curriculum in order to be able to do my Latin homework. I actually self-taught myself the first month of that semester in all my classes, and I was doing a full time load at the time. Then I went back to school, and then I was working on the semester. Then my last month of the semester I ended up in a hospital for a week, and I got out actually the day of one of my exams, and I went for my exam directly from the hospital. Yeah and my teacher is like, you know you can get this differed. I’m I think I can do it. I’m already here. She’s like, okay, and I wrote that exam just sitting there having just gotten out of the hospital that day, and my teacher thought it was insane.
Of course, the teacher who taught the class that I went to before I got into the hospital really thought I was insane because I really should have gone to the hospital the week before. But I really, really liked my project because it was a seminar that I was supposed to give on how Frankenstein’s monster and Frankenstein’s are a modern Prometheus. I was contrasting the Greek mythology of Prometheus with Frankenstein and it was a lot fun. I love performing, and I love teaching classes so I really wanted to do it. I literally having not eaten in two weeks went in, did my seminar, finished out the class then told the professor I have to go get admitted to the hospital now.
She was looking at me like what? I’m yeah, I haven’t eaten in two weeks, and I basically need to go to the hospital now to get rehydrated, and get put on an IV and get admitted, and get put on IV steroids. She’s you could have deferred, you could have done something else. You could have written an essay. I’m but I really wanted to do the seminar. She was shaking her head at me. She was you are insane. I got an A on the seminar though. It was fully worth it but yeah, I went off to the hospital. I went to the nurse. I’m you need to put me on banana bag IV fluids and IV prednisone. She was why don’t you let the doctor decide that. They put me through to urgent care, and the doctor walks in, sees what I said the chat, and says do what she said, and admitted me for five days I think. They put on exactly what I said, IV prednisone. Solu-Medrol was actually the IV version of prednisone. They put me on a banana bag. They put me on [inaudible 00:22:51] I needed magnesium too. That stuff burns your veins.
A lot of the stuff gravel, [inaudible 00:22:59], Flagyl all of them put together they burn your veins. When you come out of the hospital you could actually feel the veins all up your arms because the insides burn. I had a strange life.
Trav: At least that gives you a lot of good stories to tell, and speaking of which, when did you start blogging?
Ania: I think I started blogging in 2011, about a year after Alex and I got together. It was actually pretty funny. I started out it was going to be a writing blog because I was an aspiring, and still am fantasy author. I decided that if I had a place where I could play around with my word building and stuff like that it that might be great. It was also around the time that Alex got me hooked on all the blog that were the precursors to Freethought Blogs and Skepchick, and I was reading them obsessively every day. The first two hours of my day were basically just reading everything I could get my hands on, and it would get me so angry that I would just end up writing these rants through these articles or these responses about different things, and lo and behold my writing blog turned into a full on, atheist, social justice blog.
Then Alex started writing for me as well as the guest post, which is actually where the original URL of the blog used to be Ania’s Work in Progress because it was about Ania’s work in progress, which always confused people after we changed it [inaudible 00:24:36] and Rants because they were like where do those two come from. Then Alex started writing for the blog, and at first it was all guest posts but then she was writing for it as much as I was so it just seemed silly to call it guest posts anymore. She became an official part of our blog, and then we realized that too many of her family, and my family, specifically my family’s parents who can’t stop gossiping about things was getting us in too much trouble.
We realized that it was probably in our best interest to do something new, and then we’d also been thinking about changing the name of the blog, switching to Word Press, and also, combining it into something more cohesive as opposed to Ania’s Work in Progress, which seemed [inaudible 00:25:22] to finally launch our blog together. We threw out some call outs to our readers to help us come with names, and after that entire search it ended up coming out of me, snarky responding to somebody, “What? You just thought you’d come into this read in, ‘splain a thing,” and everybody just thought “‘splain us a thing” was the funniest thing they’d ever heard. I’m great, watch the name of our blog. It’s going to turn into Alex and Ania Splain You a Thing, and that’s exactly what happened. It turned into Alex and Ania Splain You a Thing, and it’s worked for us ever since. Now, I’m launching a video cast, a vlog as well to go with it as well called the Toking Chronie where I can talk about a variety of disabilities, specific issues as well as do my food blog that I’ve been wanting to do for a while. I’m excited about all that.
My book is getting published, which is even more exciting.
Trav: Awesome. Great, great. Tell us a little about that book. It’s called Young, Sick and Invisible.
Ania: Yap. It’s talking specifically about the fact … a lot of times a lot of the problems that I face within the medical system was people just looking at me saying you are too for these problems. There’s a certain, specific difficulty that comes with being young and disabled because people tend to look at your age rather than what’s actually going on with your body, and people have a lot of expectations with age as related to health. Sick obviously, because that’s what I am and invisible because a lot of times if I’m just walking down the street a lot of times people can’t tell that I’m disabled even though I have permanent damage to my mobility on my right side, I have difficulties walking for long period of time. I limp very frequently but if my symptoms are relatively managed at the time, I could be walking down the street and you could have no idea that I’m in extreme pain.
A lot of times I exist in this invisible space, and I’ve also had my experience as existing in a visible space though when I walked through the cane and when I was on a wheelchair or when I’m throwing up in public much to the horror of everybody around me. The idea was actually my mother’s. I have to credit her with that. When I first started going through my leg problems my mother told me that I should write a book for people, and let them know what I went through in order to let them know what I went through in order to help them not go through the same thing. I didn’t actually think she was serious when she suggested it. Maybe she was but the idea stuck in my mind and I started picking away at it, and it was an idea but I put it on the back burner.
Then I started actually going through even more intense things related to my disability. I started accepting that I actually more disabled. That was a big process for me. I can’t tell you how often I said, well, I have chronic illnesses and stuff but I’m not disabled but then it was I’m disabled. There’s no question about that anymore. I’m disabled and now I’m on disability too. The more I phased into that process the more I started writing about my experiences and the more I realized just how much my experiences really impacting me even the more that book idea really started swimming around in my mind. The more people actually started suggesting the same thing saying I really wish I could buy your book, and I said, let me try it then. I put a [inaudible 00:29:05] an Indie go-go, and said let me try it, and let me use the money that I can raise from this to also take a couple of months off to work on this book but also take some time to get better.
It was more successful than I suspected, and I was able to take a couple of months to start writing, and then my blog took as well. I had to try to manage those two things at once. Trying to write a blog and a book, and another book at the same time is overwhelming to say the least but fun as well. It’s a good thing I like writing because I think that’s what I’m going to be doing for the rest of my life. I wrote it, and while writing it I was even surprised about some of the subjects that came up. What I started with was I thought it was going to be to what it ended up being was two completely different things, and even during the process of writing the book, I learned so much. I ended up going through so much that I ended up writing this way into the book even post-edits where I had to cut and come back and be there’s more to the story now and fill that in.
When I launched it, I ended up meeting some incredible people including some people with Crohn’s disease who are now actually some of my best friends. Like Rachel that [inaudible 00:30:30] actually whose experience with Crohn’s are even more terrifying than mine are and whose a fantastic writer in her own write, and if you can find any of her own writing I absolutely recommend it. She wrote me one of the best emails I’d ever received from anybody, which was basically telling me her own story and telling how finding my writing and finding my blog just basically made her feel less alone, and made her feel maybe this is a thing she can get through. The stuff that she wrote to me was so incredible, and she’s honestly one of my best friends right now and I love, and she’s been a great support in all of this. She’s just one wonderful person, and I don’t think I ever could have met her if I hadn’t started writing this book, and that’s to me amazing as well.
Trav: That’s great. Tell us about this video cast Toking Chronie.
Ania: The Toking Chronie it was an idea was partially born in Colorado actually when I went to go visit another blogger friend Angie Jackson. We were exploring the area together and I’m a medical marijuana patient, and vesting Colorado, which has completely recreational marijuana, was really interesting for me because it exposed to stuff, I had never seen or experienced before. They have so many choices of ways to dedicate their … I mean, it was a patient’s dream and I realized that there was so much stuff that I’d never even heard of let alone seen. I spent my time there just learning about all these new things and I though patients need to know this. Patients need to know. I started telling her stories about being the 28-year-old girl who had never smoked a day in her life. Actually, that’s a total lie because I turned 28 a week ago. I would have been 25 or 26 at the time but still, late twenties, walking into a head shop for the first time, buying my first ever bong having never bought or used one before and having to ask the guy behind the counter okay, how do I use this?
The guy is just looking at me, are you kidding me? I’m okay, I’ve seen it on TV but they never prep it. The guy tells me that I have to put a sweet in it. I have no idea. I was going to put it in the bong, and all of my herb would have fallen into the water through the waterhole. I’m glad I asked. He told me how to fill it and all this different stuff. A couple of months later a friend was showing me her pipe and we were just sitting. It was summer where we were also legally able to do so, and we were sitting there, and we were smoking a pipe, and about 20 minutes in she was okay, are you blocking the hole when you inhale? I’m there’s a hole I have to block. She just starts laughing because I’d basically been taking these useless [inaudible 00:33:38] because I hadn’t blocked the air intake hole. I was basically just breathing in air rather than smoke. She was just confused about why nothing was happening. I take my usual full toke, but this time I block the hole, and I manage to just fill my entire lungs with smoke, and I just start coughing out these giant puffs of smoke like some kind of choking dragon. She’s just on her back dying of laughter because she hadn’t realized that I had never smoked with a pipe before. She had no idea that she’d to tell me, and explain to me how to use it.
I had other experiences like those two where I’m trying to roll a joint for the first time ever, and just totally failing and all of this stuff. The first time my friend introduced to a joint roll I think I looked like somebody who had just showed me the keys to heaven or something because I was like oh my god, you mean I don’t have to do this by hand. I thought I was a genius for just going and getting a cigarette roll, or I’m just rolling [inaudible 00:34:35] cigarette tubes. I realized all over a sudden I have all of this great information and resources for patients, why not make videos so that people aren’t stuck, being embarrassed and especially I can’t even imagine an 80-year-old woman who’s going through cancer or something like that going to a head shop for the first time trying to figure what’s what. She’s got enough to deal with.
She’s should be able to just figure out how to do this from the privacy of her own home with somebody who’s going to make her laugh in the process or whatever plus I’ve always been a bit of a performer and I like singing, and I do these funny things with food that people always want me to show them make them. There’s been a lot of push towards video for a while, and I just started thinking about. I saw let’s think about it. Doing videos for medical marijuana patients. That’s a great idea. That’s something I should do. I want to talk about my social justice and disability issues. I can do that on video. I can show food on video. There’s a lot of content here for a video cast I think I should do this. Then I started thinking about possible names. At first, it was going to be something like Tea with Chronies. Chronie was always going to be a part of it because I love that word because it sounds … I always loved that after making all these jokes about being an old crone in a 12-year-old girl look-a-like’s body, that I ended up in a disease called Crohn’s disease like really. If there’s a god, he’s a troll that’s basically what I‘ve learned.
I don’t think . . . there is one though just to be clear. I just like making those jokes. Sorry, I’ve gotten in trouble with that before now [inaudible 00:36:24]. Then I just started joking around with names, and finally I just said, you know what? If I’m going to be doing an entire thing where the theme is going to be weed, I might as well just have some fun with it and Toking Chronie was born. There’s going to be a series of them where it’s going to be Talking Cronies, and then introductory videos, just a general blog where I talk about issues. I think I’m going to do an after dark one where it’s going to be TMI information so actual graphic information about bowel movements. If they are going to keep accusing social justice activists of talking about poop, I am going to embrace it. I am going to talk about poop dammit.
Trav: Go ahead.
Ania: You know what? I’ve noticed that surprisingly my poop posts where I never expect them to get any attention consistently end up being my most popular ones so there you go.
Trav: That’s some good shit.
Ania: That is some good shit in so many ways. There’s going to be an after dark one, and then my food blog, which I used to write before under the title Twisted Ladle I’m going to turn it into turn it into Toking Chronie Twisted, which is just going to be the food version of videos. I’m pretty excited. It should be a lot of fun.
Trav: This is probably the million-dollar question. What can people without disabilities do to be better allies for people with disabilities?
Ania: I have a whole book on that subject, sorry. I’m teasing. No there’s a lot of advice in the book about how to be a better ally, about things that people can do. There’ even a section about specifically what atheist communities can do to be better allies. I have all those … a lot of those actually also on my blog right now. If people wanted to check out my blog for more resources, they are definitely there. A big one is understanding that … I’m trying to think of the right way to phrase this because it’s not the easiest way. Understanding that we don’t always have the energy to do everything we want to do but that doesn’t mean we want to be left out either. What I mean by that is a lot of times there’s one of two reactions. Either people will get really angry at us for having to turn things down, or for having to cancel at the last minute, which makes it difficult for us because we can’t always commit to it or out of a misguided consideration will stop inviting us to things at all because they figure we are going to say no anyway, so why put us through this stress of having to say no.
I get it. It’s really sweet where it’s coming from but it just ends up making us more isolated. It’s got to be just this balance of the best way to treat it is I probably want to come. I will do my best to come. I may not be able to come. That’s the explanation of where I am. Invite me but if there’s anything … if you have a specific planned menu where you have to order a specific number of plates like a wedding or something like that I will usually do my best to show up regardless of my spoon level, at least for a little bit. Because I understand that commitment but at the same time if I end up having to cancel because I’m at a state where you don’t really want me there than I do need some measure of understanding. I also really do want to be there to support my friends. Making your events more accessible is a really big one. More accessible can mean for someone like me I really need there to be good bathroom access. If you are inviting 200 people to a thing and serving them a bunch of alcohol but you only have one bathroom that’s probably not going to end well for me.
One thing as a medical marijuana patient, actually I could go to a lot more events and be a lot more participant. I’m a much better participant in events if there was a place for me to safely take my medication without having to worry about either being threatened or having the police called on me. That’s actually one of the biggest barriers for me is being able to find that because even sometimes when I go to people’s [inaudible 00:41:07]. I understand. I’m someone who is allergic to smoke as well. I don’t like people smoking in my house. By necessity, I have to smoke marijuana in my own house just because I need enough of the medication that it’s just not feasible for me to go outside every time I need to especially not in the middle of winter in Canada. At the same time, if I’m going over to a friend’s house or what not I don’t always have the possibility of being able to go outside either. If you could be okay with me using a vaporizer or if there’s a smoking area that I can go to safely, or if in some cases if you are okay with it, if you allow me to smoke in your house. In some cases, it can even just be keeping me company when I go out to my car to smoke.
I don’t like going to my car because there’s this whole procedure. I usually have to give my keys to somebody else to make sure that the police don’t find me in my car with my keys because that could create a potential issue where all I really want to do is just sit in the back seat and get medicated and go back inside. I have no intention of driving while I’m under the influence because that would be wrong. What’s also interesting is that a lot of people don’t understand that even though I’m smoking marijuana I’m not necessarily getting high. It is actually because it goes to treat my condition it’s about the same as me taking a Tylenol compared to most people. If I wanted to get high I’d basically have to hot box with a full joint, and basically sit in the car, and breathe nothing but marijuana for a while. It takes a lot to get me actually stoned because there’s so many symptoms that it’s going to treat. What it actually does is it just makes me in some ways more coherent because I’m not being distracted by pain or nausea so I can focus specifically on what I’m doing as opposed to ignoring what’s going on with me.
Yeah, trying to create a space where it’s safe for me to medicate can be a big one. The thing is if you ask me to bring a vaporizer, I can use my vaporizer. It’s not the same as smoking. It doesn’t create the same level of smell, and it’ll basically just dissipate in the air before it gets anywhere. Even that I’ve heard people bothering. Again, I understand. If you have asthma then that’s not a thing that can happen but it also means I might not be able to hang out with you as often say at your house. It might mean that we can only really hang out at a coffee shop where I can go outside to the smokers’ area and medicate if I need to.
This isn’t an all the time thing. Sometimes I’m fine to go out for a couple of hours without medicating if my symptoms are more under control but if I’m in the middle of an active flare then that ends up being an important consideration.
Trav: That’s all the time we have for today. Where can people find you online?
Ania: Alexandania.com is the best place. It should have a link to pretty much all of my projects. We also have a Facebook page. If you search Alex and Ania’s Splain, You a Thing we are on there. Ania Onion Cebulla now has a writer’s page that I just started yesterday. I’m on YouTube as the Toking Chronie. I’m also on Twitter @DearAnia. I think that’s everywhere.
Trav: All right. Thanks again for joining me today Ania.
Ania: Thank you very much for having me. It’s been a lot of fun.
Trav: Thanks for listening to the Bi Any Means podcast. The music you heard throughout the episode was endurance by Dream Youth. You can find more of their music on dreamyouth.bandcamp.com. The Bi Any Means logo was design by Asher Silberman. Follow me on Twitter @tmamone and like the Bi Any Means page at www.facebook.com/travismamonewriter . If you like what you have heard, consider becoming a patron on Patreon. Just go to www.patreon.com/tmamone. As always, you can go to www.bianymeans.com for more musings of a queer humanist.
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