Understanding Ania’s Weird Body things

I write a lot about my disabilities and illnesses. I’ve discussed what trips to the hospital are like and what a regular day can look like. I’ve shared advice for new patients based on what I’ve discovered myself in the time I’ve lived with them. I have never, however, taken the time to just put together a list of definitions of what those various conditions and disabilities are.

So without further ado, I introduce a glossary of my weird body stuff.  

Continue reading “Understanding Ania’s Weird Body things”

Understanding Ania’s Weird Body things

Frost on the Sand

This is the only thing I can write today.

My Canadian residency is in doubt. My denial may soon be final, based on something so perverse and so trivial as my being a member of an ODSP-receiving household. My appeals may yet save me, as Ania and I exhaust every remaining option to secure my life here in Canada.

Because there is no life for me elsewhere.

Continue reading “Frost on the Sand”

Frost on the Sand

What’s the Story

In my last storytelling post, I wrote about how a lot of my paintings come with stories of their own. I usually just let it stay in my head, but I thought I might have some fun and actually tell you, dearest readers, some of the stories.


Medusa from behind with a butterfly tattoo

Medusa is considered a monster, she is assumed to be so ugly that just looking at her face turns you to stone. But before she was ugly, she was beautiful. She had long lustrous hair, which is why it was changed in order to punish her. Her gorgeous locks turned instead into hissing snakes. But in her metamorphosis she went from being a victim to being a being of fear. Sometimes it is in change that you find yourself. For Medusa, metamorphosis is the meaning of her life, her own change and the change she brings on others. She commemorates this with a tattoo of a flying butterfly on her shoulder.

Continue reading “What’s the Story”

What’s the Story

Location, Location, Location

A friend of mine asked me recently whether I love writing and painting equally. It’s a questions I’ve thought a lot about. I spend a lot of time on both, and they take up a fair bit of my life. Ultimately however, I know the answer. I am a writer, more than that, I am a storyteller. Painting can and is a lot of fun. It is a great way to visually represent some of the things that happen in my head, and in the last few years I’ve let myself delve into it more fully than ever before.

But even my painting relates to my storytelling. Many of my paintings are of characters that I conceptualize and then decide to paint, or scenes from paintings I am trying to work out. Even when it doesn’t relate directly to something I write, my paintings are often about telling a story or at least suggesting a story on their own.

My writing is my most effective way of storytelling since it lets me take the time to fully work out the stories and put into it everything that I’ve wanted, but ultimately, it is the storytelling that drives me.

In another place, another time, I might have been a bard – telling stories, playing music. My social justice class is bard. I think that stories can teach, they can heal, they can move you, they can inflame you and entice you.

When I think about storytelling, however, this one anecdote comes to mind.

Continue reading “Location, Location, Location”

Location, Location, Location

February Self-Challenge

I’m finding myself feeling increasingly overwhelmed with everything going on. Between the horror in the US, the increasing ableist microaggressions populating my world, the fear of my friends, and the never ending struggle to make ends meet, I’ve been finding myself struggling to write. Not because I have nothing to say but because sometimes it can feel like talking about anything other than the trash fire going on feels wrong.

I know it’s not. I know that no matter what happens, these issues still have to be talked about. That even if the worst should come to pass in the US, it is still important to talk about the issues that got us here so that we can fight it completely. Not let fascism and Nazism regrow like a cancer, but excise it fully. I know that self-care and happiness in times like these, in times where you realize that many people like you might die in the coming years because so much of the world just doesn’t think your life is worth saving. That self-care means making sure that you have the strength to keep fighting another day.

To this effect, I am going to take a challenge that I’ve seen Alex Gabriel recommend and other bloggers on this site try out. I am going to commit myself to posting at least 1 post per day this month. They won’t all be serious content . Some might be excerpts of stories I am working on, recipes, or links to videos I’ve been working on making. Either way, once a day I will post some content.

Want to help encourage me? Please post a comment, or consider becoming one of our patreon patrons.

ADDENDUM: I feel the need to add that since I do most of my writing in the middle of the night “DAY” might be a bit of a misnomer lol. For example, the post written for Feb 2 may well not get posted until after midnight.

February Self-Challenge

Energizer Bunny for Xmas (plus a thank you)

For the last week, week and a half really, I’ve been in a bit of energizer mode. Alyssa calls it my productive phase.  We’re celebrating the holidays at home this year. For the first time in a while, and I don’t want it to feel like we’re just too poor to go somewhere like some holidays seem to feel. The sad truth is, though, that we are broke. We haven’t really been able to afford to get each other gifts for some time.

Still, I’ve been diligently working on trying to make it feel like the holidays, while also putting together little somethings for the wonderful people in our lives. And that has meant – cooking. And baking. And some crafting.

It’s been serving two purposes. At the same time that I am making a whole host of Christmas food, I’m also making a bunch of frozen meals and whatnot for future low spoon days. So far I’ve managed to freeze some Kluski (Polish Potato Dumplings) as well as some fries that just need to be popped in the fryer. All at the same time as preparing the filling for a batch of pierogi: which I haven’t really made since that time years ago when I sold them for a while and ended up making over 744 pierogi by hand.

Continue reading “Energizer Bunny for Xmas (plus a thank you)”

Energizer Bunny for Xmas (plus a thank you)

A Very Alyssa Playlist

I often think that the earliest sign of how my gender would eventually unfold was my taste in music. From the earliest I gravitated to pop music performed by women, and even as I grew older and this fondness became tinged with new feelings about the singers’ exposed skin and shapely bodies, there was something there that my male peers didn’t share. My autism aimed me at euphonious, smooth sounds and clear vocals that ruled out the harsher forms many of my peers preferred, but that wasn’t it, either. Before I knew what that meant or why, I could tell, they spoke my language. It was more than titillation, sensory needs, or aesthetics that drew me. The songs were about love and relationships and feelings, and all of them were expressed in magnificently feminine terms, and that made them real in ways that the male-led songs I gravitated toward in adolescence never managed to be.

I learned to be ashamed of this fondness, keeping it hidden. I’d gotten enough odd looks and dismissive noises to know that this was, at best, a child’s fancy best discarded, and more likely, something that contributed to the tumultuous awfulness of my adolescence. I forced myself to appreciate music led by men. I succeeded, but I never gave up on my old favorite sounds.

The future vindicated me.

Continue reading “A Very Alyssa Playlist”

A Very Alyssa Playlist

Flamboyán Al Fin

He hoarded his Christmas gifts. We would get him cologne, ties, shirts, tchotchkes from our travels, treatments to soften his overworked hands, and they would all find their ways into drawers and cabinets, untouched for years. His clothing had to wear to nothing before he would discard it and start the next one’s slow disintegration. New, untouched things are a treasure to save for when they are needed, not an indulgence for in between. Scarcity is behind every shadow and over every hill, and a good hoard is insurance against doing without. It’s a habit my father, my grandfather, and I all share, to each other’s bemused frustration. They tangled with Communists, I grew up autistic, and we all hoard.

Continue reading “Flamboyán Al Fin”

Flamboyán Al Fin

Rest in Power

I spent most of yesterday grieving. As some of you may have heard, my dear friend and fellow writer on the Orbit, Niki Massey, passed away yesterday. Specific details about the cause of death are unavailable and it would be irresponsible to those who loved her to speculate.

I keep trying to find something to blame for what came as a shock to so many of us.

The disability system which makes people who are already struggling, who are already dealing with more than anyone should have to, jump through hoops to get services they need to survive. How many of us were denied the first, second, or third time around when applying for disability? It took me a year and a half. I was denied twice. I received a letter saying that they didn’t think my disability counted as something “continuous or recurring.” This despite the fact that I’ve been admitted to hospital at least twice a year since I was diagnosed. It wasn’t until faced with having to read a medical file that took stood almost 2 feet high and that spanning only the last ten years or so, that they finally conceded that maybe I had a point. I have to prove that I’m still sick after 5 years though.

I know so many people who are disabled, who are impeded from being able to work normally because of their disability, or who are slowly killing themselves trying to work while disabled and with no accommodations. So many who think they can’t apply while they work, and who can’t survive the unbelievably long period of time it takes to apply without working.

I know so many people who have been denied even though they live with constant and unimaginable pain.

We crawl over broken glass to get a measly pittance that isn’t really enough to live on. Then once we have it, we still spend more energy than is imaginable in trying to supplement that income enough to survive. Enough to be able to function.

I use up every ounce of energy I have and even more, just to be able to find the money to buy groceries, to be able to buy my medicine. Every time I go to the doctor, to deal with my increased pain they tell me I have to relax, but I can’t. I can’t. Because relaxation means I can’t eat. It means Alyssa, who is working every bit as hard as I am, doesn’t get to eat.

This is the reality we live with. And I’m the lucky one because I’ve passed the first hurdle of actually getting disability.

I want to blame our broken medical system, which treats fat people, women, black people, and mentally ill people like we’re not human. If you’re all the above then every diagnosis, every treatment, is a fight. And it’s a fight that is being undertaken when you are already wounded, already bleeding, already exhausted. It’s a fight with the deck stacked against you from the beginning.

I want to blame the systemic racism and ableism that not only contributes to the first two issues but makes it dangerous just to exist. I read somewhere that something like 1 in 2 of those people killed by police are disabled. We already know that being black can be a capital offence in the eyes of the police who have no problem with committing murder. Who don’t even see it as murder because that would mean having to admit that black people are human beings who matter. That black lives matter. Imagine being a disabled black woman in that environment. Imagine living with the fear that being stopped by police, that having the police called on you, whether out of malice or out of ill-conceived concern, could mean your death.

Despite all of these pressures, despite living with chronic pain and having to cope with low energy, despite all of that Niki stood up and fought for what is right.

Her writing served as an education for more than one of us. Her words, at times angry, at times sad, at times sarcastic, at times even happy or excited, they will live on. Not just on the page, but in the hearts, minds, and actions of those people who she taught how to be better. We will all strive to live up to the faith that she had in us. Because even when her words were brought on by despair, the simple act of sharing them means that she DID have faith in us. Faith that we could do better. That we could BE better. That we could change the world.

She stood up for people who needed abortions. She was a clinic escort and encouraged others to do the same. She believed in reproductive justice. She believed in holding sexual harassers and abusers and rapists accountable for their actions.

Niki Massey is gone, and my heart and that of many people bleeds because of it. She will be missed but she will not be forgotten. May she rest in power among the stars and may her words echo for eternity. We love you Niki.



Rest in Power