Twenty-One Years a Sister

Six years ago today, my sister turned fifteen.  Hispanic girls are treated to elaborate pageantry on their fifteenth birthdays, complete with the appointment of a “court” with ritualized dancing and proclamations of admiration and pride from friends and family.  At least one parent usually gives a long speech highlighting their children’s accomplishments and any unusual fortunes that have visited the family in the past few years.  More than just a birthday party, the event is a time for extended circles of blood and water to grow tighter and better-informed about each other, and for holding together a community that increasingly does not hold itself.

It isn’t standard for the birthday girl’s siblings to also deliver speeches, but I wrote something brief for her.  Expressions of affection in a household are…complicated…when one sibling is autistic and the other two aren’t, and I wanted to take this chance to share something warmer than I could bear to bring forth in ordinary times.

Six years later, she’s not in high school anymore and our relationship has grown accordingly, but the affection and wonderment at the person my sister has become are just the same.  There is one correction I need to make, though, to make this moment ring through the ages and to make it fit with the shape our relationship will now take.

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Twenty-One Years a Sister
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MMJ 101: But Doc, How Do I Take It?

Edit: This is a non comprehensive list. I will be working on a series of instructional videos to better demonstrate different methods.

One of the daunting aspects for new medical marijuana users is deciding how best to consume their new medication. I missed out on the learning experiences of youth weed experimentation, so I got to be that awkward adult asking the guy at the head shop to show her how a bong worked.

It was sitting in a park with my friend Rachael that I learned how to use a pipe. Foolishly, I thought you just lit the herb and inhaled right? We sat there in the park for a while, and I barely felt any of what we were smoking. Finally, Rachael looked at me sideways and asked “You’re blocking the holes while you inhale right!?” The resulting puff ended with me hacking out a lung and my friend rolling down the hill laughing at me.

In reality, patients are sent a bottle filled with dried buds of a pungent herb, and given no instructions on what to do with it. The Health Canada insert warns you to avoid smoking, but doesn’t give options. Someone new to marijuana is given no direction on how to proceed. For all that I was clueless in many ways, I am not alone:

 

Different methods have different benefits and disadvantages, but they seem to fall into two major categories: Inhaling and Ingesting. This may not be a comprehensive list. People who take marijuana are a creative bunch as I have come to learn.

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MMJ 101: But Doc, How Do I Take It?

Stir Crazy

I sit here, almost perfectly still, but inside I’m thrumming. I have this urge to move, fast, in some random direction.

All winter I’ve been trapped inside. Trapped by the cold, by my lack of mobility, my lack of money. I only leave the home for errands, doctor visits, and the rare outing. My whole world becomes defined by the same set of streets, the same spot in the apartment. Day after day, dragging on. The sun sets too early, and I sit, surrounded by darkness except for the small light and the glare from my computer screen.

I am trapped still.

Driving in my car, to the store or back home, I am seized with this urge to just keep driving. To go somewhere new, see something different, do something outside the norm. I just want to go somewhere. See what’s around the corner, what’s around the river bend. I want to explore. I want to escape, if only for a little while. I want to see where the wind takes me.

I just want to keep driving and see where I end up. Maybe with some goal in mind: maybe seeing a friend I’ve been dying to meet in person, or helping another friend for a few days as she tries to get settled. Maybe without some goal, just driving where my instincts take me, till I find some place I can sit in the sun and let my head clear.

I want the wind blowing through me and around me to clear away the cobwebs and the dust of the last few months. I want to sun to warm up the dark places inside me. I want a few moments of self-imposed solitude, rather than the loneliness forced on me through circumstance.

I want change, just for a little while. Just to refresh me, so that I can come back just a little bit lighter, reminded of the fact that freedom still exists.

But reality traps me. I am imprisoned in a cage made of poverty and disability. I can’t afford to go on an adventure. I can barely afford my medication to keep my body free from pain. I can’t afford a vacation, to escape from my existence. I can’t take a break for even a moment, to forget that I have to scramble constantly, to make sure we can find some way to make sure that are lives are a little more stable, just that little bit less desperate. To find some way to afford Alyssa’s transition, and maybe get what I need to make my meds stop hurting my throat.

I am trapped by my own body, which won’t let me explore in any way without the mobility assistance of a vehicle. I am trapped by pain, which makes it unreasonable for me to travel anywhere where I cannot access my medication.

So inside I thrum, with unspent mental energy desperately looking for an outlet. With a fierce wanderlust, almost like pain, beckoning me elsewhere. I feel trapped and so I close in further on myself. I become claustrophobic, not of the space I am in, but in the trapped feeling inside my own mind. Old thoughts start to swirl around, scolding me for all the ways in which I am a disappointment. My feeling of being trapped drains my motivation, making it that much harder to finish orders, or write new posts, or work on other stories that I could maybe sell.

I seek refuge in sleep, in the escape dreams afford me, but even that is not enough anymore.

I just want just a few short moments of freedom.


 

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Stir Crazy

Fishy Redemption

It is a bad idea to enter the aquakeeping hobby on a lark.  Not only is this a recipe for any of various easily-avoided mistakes that beginners make, but it encourages a cavalier attitude about one’s new pets.  It is easy to treat fish and other small-animal pets as easily replaced decorative accents rather than animals with their own needs, behaviors, and beautiful uniqueness, especially since relatively few fish respond well to attempts to physically interact with them.

I started on the path to fishkeeping as a precocious child, and my parents and other adult models were not themselves hobbyists.  What I learned about the best practices for populating and maintaining an aquarium, I learned by reading every fish book I could find…and by trial and error.

There were a lot of errors.

Every fish that perished prematurely under my care stung my precocious heart.  I felt affection for every individual fish, even if I couldn’t tell them apart or if I replaced them quickly.  For every one of them, seeing them sicken and die as a result of something I did felt like a crime I was committing not just against them, but against their whole kind.  This idea stuck in my mind, each failed effort seeming like an un-redressed wrong as well as an unsolved problem.  I convinced myself over the years that I could assuage my conscience by revisiting each species and giving it, with that later effort, a home in which it could thrive.  There is no possibility of effecting restitution for the fish I killed long ago with my overzealous and poorly-informed attempts, but I can still do right by others.  Even if that reasoning is decidedly irrational, these stories may spare other aquakeepers from making the same mistakes and other fish from these often-gruesome fates.

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Fishy Redemption

Dear Doctor: A Response From A Patient

Dear Doctor:

Thank you for your letter. It is rare to hear a doctor acknowledge that our knowledge is valid and that we are not imagining how doctors treat us. Thank you for validating that experience. I appreciate your candor. But I still have a problem with your letter, and it’s this: it is still all about doctors and their ego.

I know my disease scares you, it scares me too. Actually it terrifies me.   Except at the end of the day, you get to stop thinking about it, usually shortly after I leave the office, whereas I am stuck living with the consequences of your fear.  Your fear, which has nothing to do with me. It’s not about being afraid of what I am going to have to deal with if you fail, it’s not about making me feel better. Your fear is about the fact that my disease makes you not feel infallible. It’s about your fear that I might not be as in awe of you as I would be if you could fix my problem quickly and easily. You are afraid that you will lose some of your power.

Yes, some of you might genuinely feel bad that you can’t help us, but for many of us, on this end of things, the truth feels closer to the idea that you don’t actually care about us at all.

One way or another, our disease scares you, but we are not our disease. We live with it, we fight it same as you. We are not supposed to be your opponent, we are supposed to be partners in this fight. You are supposed to be our support, and yet over and over again you let us down. I have multiple friends who have undiagnosed pain conditions. Some have received at least the comfort of doctors’ suspicions as to what might be wrong with them, while others have doctors categorically deny that anything is wrong. Some go years without any idea of what is wrong because doctors have neglected to tell them anything.  I have heard countless stories of patients who have been actively barred from getting answers all because of some doctor’s interference.

I myself have had doctors tell me that they were sending me home because they didn’t know what tests to run, on multiple occasions. I have had doctors disregard my pain as just something I should be used to by now. I have been denied treatment, all because doctors were afraid of my illness and couldn’t differentiate between it and me. Just because you cannot cure my illness, doesn’t mean you can’t help me. It means that the help you can give me is to try and make it easier for me to deal with this illness. It can mean taking away the excessive pain for at least a short time. It can mean shutting down symptoms by temporarily increasing treatment with steroids.

You say you fear my knowledge, when in fact my knowledge is your greatest asset. I know you can’t be an expert on everything. I can help educate you on my needs, if only you would listen. But you don’t fear my knowledge, you fear that my knowledge makes us equals. You fear that with my knowledge, it means I will know when you are wrong. Here is a secret: we can forgive you for not knowing or for making a mistake, but we cannot forgive you for choosing arrogance over help or for trying to pretend that you didn’t make a mistake. I will trust you and respect you more if you admit ignorance than if you pretend answers. Learn from my experience. Work with me! What would take you years to learn, months to research, I can tell you in a few minutes. But you have to trust me. You have to work with me, rather than putting yourself above me.

When I tell you my pain is different, that means something. After years of being in constant pain, I’m no shrinking violet that is too delicate to handle anything but the lightest of pressure. When I come in because of pain, when I come in because I don’t recognize the pain, that means something has changed. Yes, it might turn out to be just a new presentation of symptoms, but it can also mean something else. Don’t assume that just because I have this condition I am immune to everything else.

I had swine flu for a month before I was diagnosed, because a doctor refused to believe that I could tell when pain and nausea were different. How many people did I infect in that time, going to class? I have had pancreatitis multiple times, only to have had it dismissed as “just Crohn’s pain” until the tests came in with high lipase. I have had pain dismissed as “Just Crohn’s pain” as though Crohn’s pain on its own was not serious.

Doctors are so concerned with their own importance that they often seem to forget that their patients are human. Then they ask us to excuse them by claiming to be “only” human, when they fail to accord us the same decency. When they are reminded of their mortality rather than their godhood they elevate themselves by treating us as less than human so that they still maintain their upper hand.  And then when they are called out on it, they beg for forgiveness and blame the society that treats them as gods. Rather than taking responsibility for participating in this charade and allowing that to affect our quality of life, you ask us to participate by offering advice on deferring to your egos. Your very apology, your very secret, and your advice all spit in the face of our experiences by putting the burden on weak and exhausted bodies and minds rather than give up some measure of your privilege.

In short, I don’t have time to worry about whether or not I make you feel a little less like a god around me. I’m too busy trying to get through my day with my own body and mind kicking my ass the whole way.

Sincerely,

Patient Ania

Dear Doctor: A Response From A Patient

Let Me Take A Selfie

A few years ago, I participated in one of the Facebook status games. The point of the game was to reveal something about yourself, something that some people might not know or that you think they should know. Among the list, I included that I struggled with fairly severe body image issues. A friend of mine responded that she was surprised to learn that because she always believed me to be very confident. Since I have a tendency to hide my body, even as a nudist, and a tendency to show discomfort around my appearance, I was quite surprised to learn that she believed me to be confident. I asked her why she thought so and she replied: Yours always posting pictures of yourself.

It wasn’t meant as a criticism of me, it wasn’t meant to shame me, and it was simply an observation. I post pictures of myself, I take several pictures of myself, so therefore I must be confident.

As a culture, we’ve created this idea that selfies are a sign of vanity, and we are terrified of vanity. So much so, that we have built an entire culture predicated on teaching everyone to hate their appearance. We create impossible standards and then tell everyone that regardless of circumstance we must achieve it and maintain it. We’ve so thoroughly pervaded our social bias towards people who fall outside the “acceptable standards of beauty” that we as a society no longer treat them as fully human. Perversely, in an attempt to avoid the appearance of vanity we have instead created a cultural obsession towards an obsessive hatred of one’s self.

Ultimately, that is all that vanity is. It is an appreciation for one’s own appearance. It is a love for what you see when you look at yourself. It is a comfort in your own skin. Yes, excessive vanity can be dangerous, just like excess in anything is dangerous. But vanity, by itself? It is an act of self-love.

But selfies? They’re not an expression of vanity, they are a lifeline that reminds myself that I am not worthless. That I am not hideous. It is what allows me to replace my internal image of myself from one of loathing to one of acceptance. Because I don’t love how I look. I hate it. I can’t look in the mirror without desperately wanting to cut off some pieces of myself. Without wondering how anyone can possibly be attracted to me, and wondering if every sexual interaction I’ve ever had was a lie. My body, my appearance, was the weapon used to cut at my psyche over and over and over again. I was told it was the reason I was alone.

Those words, those cuts to my self-esteem are part of the reason why I let myself be taken in by users and abusers when I went out into the dating world. It was the excuse for every negative interaction with people I was interested in. They’re the reason that I sat like this, to avoid my rolls showing up through my shirt, because then people would think of me as fat.

Ania at 14 sitting with her back arched so as to not show any bulges

It is what made me think for years that the girl in this picture was fat.

Ania at 13 standing in front of the Notre Dame

Then I figured out that if I was careful I could take pictures that highlighted the few things that I do like about myself. The contrast of my features against my sk

Ania in a black tank top
in, the darkness of my hair, the colour of my eyes, all things I could appreciate about myself. They were things that let me believe that I had value, that I was worthy of love. Especially in this world that goes out of its way to tell me the opposite. These pictures, these pictures that are used to mock my vanity, to mock the very hutzpah of daring to love even the smallest part of myself when I am so far from perfect. Because how dare I. How dare I?

Older picture of Ania
How dare I look to myself for validation when the world teaches me that I should rely on the approval of men, regardless of whether I have any interest in their approval. How dare I not be grateful for the compliment that men deign to bestow on me, regardless of whether I want them, or whether they make me feel unsafe and like a target. The one that tells me that I am never allowed to refuse an advance because I’m ugly and so they are doing me a favour my being with me and tells me I am not allowed to have standards.

So no, I don’t need you to tell me that I am pretty. Because I have my selfie, so that I can tell myself what I need to hear.

Because that’s what they are. They’re selfies, and they have nothing to do with you.

 

Let Me Take A Selfie

Lessons from a Root Canal

For the last four months, I have been struggling with extreme dental pain. Four months ago, I went to the dentist for the first time in over 3 years. I had three cavities that needed filling, and I was getting the first two filled. After the procedure, I started feeling pain in my teeth and jaws. I didn’t know what it was, so I went back to the dentist. She said that it was probably just healing pain but to come back if it continued, and that I would probably need a root canal. Unfortunately, I left the country to visit Alyssa’s parents. For the next two weeks I continued on a cocktail of Aleve and Tylenol. The pain wasn’t getting any better. It was getting worse. The day we got back home, I called the dentist and made an appointment. It would be in a week. Then two days before the appointment, on New Year’s Day, the pain got so intense that I couldn’t do it anymore. I went to an emergency dentist, who did an x-ray and gave me an unexpected answer: my wisdom teeth, which were already eventually to be removed, were infected and needed to be removed right away. There was nothing he could do so he gave me x-rays and some painkillers and sent me on my way.

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Lessons from a Root Canal

Leavanny Tall Behind

I have no patience for people who dismiss the appeal of “childish” things.  I’m overwhelmingly thrilled with how the past two decades have been the decades of cartoons for the older set, of “nerdy” concepts like superheroes and space operas becoming massive cultural phenomena with mainstream appeal, and whole hobbies growing with their aficionados rather than expecting them to leave them behind on their way to fantasy football or whatever it is that boring people do.  One of the things I will never stop being happy about is how, through all the years of pushing me as hard as they could into all the wrong molds, I never managed to lose that spark of joy that I call out of LEGOs and Transformers and model dinosaurs and anatomically-correct plastic spiders and the adorable-cockfighting-for-children simulator that is Pokémon.

I’m glad in general, because the only joy I have ever experienced that isn’t that kind of joy is the joy of romantic love, and because hanging on to that exuberance has made me a better teacher, a better partner, and a better person, and someday, it might make me a better parent.  I’m glad because if they had somehow beaten out of me that ability to swell with happiness when surrounded by tropical fish or gundam model kits or stuffed toy lizards, I am not convinced that I would have survived my adolescence.  I have been sustained by the sheer simplicity of that “childish” joy, able to set aside the continuous terror of a world not made for people like me because the worlds those things inhabit are neat and tidy and written out in reams, because they accept my engrossing obsession without a second thought, because I can touch and handle and feel them (except the fish…) and complete my sense of their being.

I’m alone in the office writing this, my colleagues either attending a presentation or out for the day, choking back tears, because I know another reason why this specific joy means so much to me.

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Leavanny Tall Behind