They say goldfish have no memory

Grief is a strange beast. Suddenly, Facebook showed me an event, back in Toronto, for queer night at the aquarium. Nel would have loved that. Really and truly loved that. And with no warning, I'm a puddle on the living room floor. Drowning in what-ifs. She's been gone for more than two years now, but sometimes my fingers jump to text her something that would make her smile. What-ifs aren't how historians think, but it's too easy to default, to wonder: what if we could have done something differently? What if she'd found the way to survive? The rational historian brain doesn't help with the sinking sadness that sometimes, even if I can push those doubts aside, I still miss her.

Five years after that spring where so much went wrong, all my fears and feelings are circling around again. It's happened before, and I know what's brought my memories back to this place. I'll leave that part unwritten, because it's not my story. Yet the strength with which the grief and guilt still hurt me - it's a surprise, every time.

Medical stuff

I'm not in the frame of mind right now for a coherent essay-style post; bear with me.

I usually go home and cry for a while after certain medical procedures. It's just how I cope with knowing that this is something that is part of my life; that something my body did to itself, for reasons medicine does not understand, means that I need unpleasant and invasive procedures, regularly, just to keep certain bodily functions proceeding as they should. It's unfair, so every few months I let myself have a couple hours to feel sorry for myself (positive living with chronic illness propaganda be damned!).

Today it wasn't just the sadness that some things about my body will never get better. Today I honestly feel like I've been assaulted. A man I didn't know touched my body in ways I'm not comfortable with, without my express consent. Four people were at my appointment: a male nurse, a female nurse, a male resident, and the female specialist. I'm used to the female nurse and the specialist, who are there every time I have this procedure. They know I like a heated blanket, and that I listen to specific choral pieces through the procedure because it helps me keep my breathing on track. They also know I'm a sexual assault survivor and they are sensitive to that. The two men there threw me off guard. I didn't anticipate unfamiliar people in the room in the first place, and still get nervous about this particular thing.

They asked if the male resident was ok, and I said no, and he politely left. I had said I wasn't ok with male practitioners involved in this element of my care. I assumed that was clear enough in referring also to the male nurse. Evidently, it wasn't. But I don't advocate well for myself when I'm in a medical gown and hospital socks. I figured he'd leave at any moment. But he didn't, and suddenly this man I don't know was cleaning my body to prep for the procedure, and I just didn't have the strength to say no. So I put on my choir playlist and tried to pretend it wasn't happening.

But now the pain in my body and how tense all my muscles are because I couldn't relax and the feeling of unwelcome hands makes me feel raped all over again.

Sexual assault awareness month

Apparently, this month is sexual assault awareness month. Somehow, I was unaware of this occasion for awareness - or at least, I'd forgotten that sexual assault was allocated specifically to April, at least until I saw someone else's Facebook post about it.

Who is this month for? I was as aware of sexual assault at the start of April 2003 as I was at the end of it - being assaulted halfway through that month changed my relationship to sexual assault in an intensely personal way, but growing up as a girl in this world, I'd always been aware. I always will be aware.

If sexual assault awareness is directed at women, that's insensitive at best. Most women are aware of sexual assault when we take the bus home at night. We are aware of sexual assault when we're the last one in the office with a male co-worker we don't know so well. We are aware of sexual assault when we enter public washrooms alone, when we contact a new match on Tinder, and when we take a taxi. We can't afford to be unaware. Non-binary people are quite likely even more aware of sexual assault, depending on their gender presentation.

What is the goal of sexual assault awareness month? If it's so that women know how to protect ourselves - well, we already do. It just doesn't work sometimes, because rape culture is really that pervasive. Sometimes, all the vigilance, looking out for your friends, staying sober, dressing modestly, staying in at night, watching your drink, learning self-defense, etc. etc. etc. etc. ad nauseum, is futile. Rape happens because rapists commit rape, and not because their targets are unaware of this possibility.

Men are aware of sexual assault. Just about every comment thread about rape culture has guys insisting that statistics on the frequency of sexual assault are overblown, or hijacking the conversation to be about how men get raped too (and of course, rape can happen to anyone! just at different frequencies). Awareness is not the issue here. The problem is misogyny that's so deep-seated that far too many men don't give a shit that this happens to women because they too think they're entitled to women's bodies.

Can we have a "consent awareness month" or a "rape culture education month" instead? Something with real initiatives that grant meaningful amounts of money to organizations that empower bystanders to intervene, that teach boys and men that they have a responsibility to seek consent. Something that talks about how microaggressions can create a climate that enables rapists. And we need to do more than just post on social media about it. Individuals, even prominent ones, can only do so much. We need funding to help engage with people who can prevent rape. We need political changes that empower survivors to get counselling.

I find this shows some problems with ambiguously-defined awareness months: what is the goal of a month of "awareness"? We can dress up in all sorts of different colours for all sorts of different causes, but ultimately the problem isn't that we don't know about something. The problem is that the people who have the power to change something don't make it a priority. Grassroots initiatives make us feel like we're doing something, at the risk of enabling further inertia on the parts of governments, major funding agencies, and so forth.

Rant over. It's time to be "aware" of sexual assault for another thirty days, right?

Special needs?

I have mixed feelings about the video about Down Syndrome Awareness that's made rounds lately on social media. In this video, Lauren Potter notes the key needs of people with Down Syndrome - jobs, education, housing, friends, love - and asks the viewer, "are these special needs?" When you frame it that way, no, of course, they aren't - but at the same time, it's important to recognize that some of us have needs that must be met a bit differently. So in a sense, there is a "special" component to those needs.
For instance, it's not special to need housing. All humans do! But I specifically need housing without stairs, and may eventually need other adaptations if my condition changes. Framing this as non-special means I risk having less access to the units that are suitable for me, when accessible or adapted housing units ought to be allocated to people whose disabilities necessitate that sort of infrastructure. Similarly, I need to rest, like every other human. That's not "special" either. But the degree to which I need to rest, and thus have flexibility in my working hours, is special - or at least, it's in excess of what is expected of most people of my age. The rhetoric of "not special needs" is important in breaking down the stigma that excludes many disabled people from opportunities. However, we cannot take things too far: if we flatten out our differences, we risk people assuming that we don't need to have our own needs met in an individualized manner; we obscure the need for additional funding for accessibility initiatives and individualized care.

Socks

Let's talk about how different facets of health intersect (I don't see the campaign today in an unproblematic light given its corporate connections, but visibility is so critical that an awareness day can't hurt). When I first bought the skein I knit these socks from, in October 2014, I darkly joked that these were going to be my "s.a.b.l.e. socks" - the acronym meaning "stash acquisition beyond life expectancy," a term crafters use for folks who have a tremendous quantity of yarn, fabric, or whatever might be their medium of choice. When I got this wool, however, I had perhaps a half dozen balls of yarn in my collection. I was brutally sick that fall, having just been diagnosed with #neuromyelitisoptica - a rare autoimmune disease that resembles severe MS. I asked my neurologist what he thought my prognosis was. He couldn't tell me, and the stats I found online for my condition were pretty grim. As my health declined in ways I couldn't have imagined, I feared I wouldn't live long enough to make more than a couple more pairs of socks - let alone write a PhD thesis. My poor hand function meant that knitting was excruciatingly slow and often painful, so I figured that a small amount of yarn would last me the rest of my natural life.
The people around me saw the physical manifestations of my condition (not hard, as I was driving a conspicuously large scooter or, on good days, shuffling about with a Mussorgsky-themed walker). But only a handful of friends made space for conversations about what I dealt with emotionally. It was not just the physical illness that felt like it was literally killing me - I also feared that my declining mental health would bring me to a breaking point. A physiotherapist told me I'd never walk again, and at first I actually accepted that as not a huge deal - I figured I could cope with that, if only I could find a way to not wake up with a sense of dread each morning, and if only my physical disability weren't so isolating. If only the friends who'd pulled away that fall became close again, if only I could trust that my thoughts were my own rather than the product of a cocktail of medications.

Partial paralysis was a physical challenge, but the emotional impact of an acquired disability and its social consequences was devastating. I sought counselling, but the resources available to me were limited - my family was supporting me in paying for physiotherapy, and a therapist would have been more than we could do at one time. The health centre at my university allows for six counselling sessions per student, and I maxed out on those much earlier in my illness; instead, when I begged for help shortly after my worst relapse, I received one short session in which the counsellor repeated how resilient I was, then referred me for group therapy - something I'd have liked, if the group were targeted for people in my situation, but it was a general anxiety group for stressed out students, and they were coping with different issues than I had. The hospital social worker encouraged me to move back to Toronto to be closer to my family, but that would mean leaving my friends, a new choir, and the cat I fostered. Plus, our home there isn't wheelchair accessible. I was too scared to tell most people that I alternated between wishing that I were dead, and being terrified that I'd die before I was ready. I was afraid that if I didn't act optimistic and inspiring that my friends would drift away.

So for a long time I associated the yarn I'd bought with the challenges I had at the time. It was well over a year before I got it out of the closet to cast on a pair of socks, because of the emotional weight that I'd bestowed on this bit of fibre. It took me another few months to finish the knitting project. I've been relapse-free for nearly a year now, and just finished them before the holidays. I'm in a far better mental health situation now. So, I guess these are now my "stable" socks.

The vertical edges of the stairs: a late-night rant about accessibility and academic buildings

On many university webpages, photographs of heritage buildings take centre stage. Old buildings speak to us, with weathered walls lining weathered halls, and hardwood floors trampled to a patina. I love seeing echoes of the past - even the gnarly bits. But here’s a gnarly piece of the present, and future: our fetishization of these lovely old buildings means that some of us cannot get inside. Indeed, the squeaky staircase with intricate railings is gorgeous. But it’s a monument to an inaccessible past, and a barrier to my future. Where you see the horizontal boards where your feet will land on your route upstairs, I see the vertical edges that could one day confine me to the ground floor, or exile me from the building.

Let’s put it starkly: if you do not build an elevator, I might not have a job. I want nothing more than to work as a historian, in a university. Researching and teaching about the past drive me. In a couple of years, I’ll likely be searching for an academic job. This is an uphill battle for anyone working on a PhD in the humanities, and we don’t all succeed. However, I have a disability, and can’t count on always being able to walk. In my field, that is a massive additional barrier to employment, by virtue of the built environment. The pool of jobs available to me will decrease with every step I cannot climb. Many universities have dozens of lovely heritage buildings: buildings where the toilets have personalities of their own, and none are wheelchair accessible; buildings with ornate staircases, and no elevator; buildings that are important, apparently, but not important enough that I have an equal right to access them. 

When you use heritage as a justification for not making buildings accessible, we are situating the value of that space solely in the past. You are also commemorating a history that prioritizes the voices and activities of those who can climb stairs, open doors, and move easily through the spaces in our community. When you tell me that you can’t bear to change a historic building, you are telling me that you value the aesthetics in commemorating privileged lives over and above taking steps towards universal access. Claims that a building simply “can’t” be made accessible are, by and large, oversimplified. It’s not that you can’t - it’s that you won’t prioritize it. Organizations instead allocate budget lines to maintaining an inaccessible status quo, claiming to have too many other important projects, to being stretched thin. But disabled people are stretched thin, preparing for plan B, plan C, plan D, plan E, arranging and rearranging our lives to compensate for other people’s reluctance to plan. 

We need allies. Ask about accessibility, even if you think it doesn’t affect you personally. If you have a job in an inaccessible building, take the responsibility to push for changes in your workplace, so that mobility isn’t an unofficial requirement for those who work with you and learn from you. Institute a policy to hold events only at accessible venues, even if those spaces are more expensive. Remember, too, that your own mobility is only temporary. Bodies change. Buildings should, too.

un-dress

As the weather gets warmer, the street harassment gets worse. Six men today made comments about my body; a seventh suggested that I smile. I pulled off my heels so I could run home faster. 

"Let's see what's under that dress, babe."
The traffic light turns from green to amber to red. Stop. Stop in your tracks; don't come closer to me. What is under this dress is half a lifetime of fear, of muscles that tense and skin that sweats in terror when you ask to undress me on the sidewalk. What is under this dress is rage that boils through my gut, bile going up my throat as my body prepares to fight because I know I cannot run. What is under this dress is a constellation of scars, so faint only I can see them. No, no, no, no, etched everywhere unwanted hands have touched. Under this dress is a hope that the words on the street won't peel off layer after layer of skin, until my skeleton is picked bare by men who want to see whether my bones themselves will bleed when they command my pelvis, my breasts, my spine that protests, to smile.

Let me be bitter

I've recently read a few things on the internet that rub me the wrong way. Somehow there seems to be a culture that moving on from something difficult necessitates gratitude - I find this jarring. I'm frustrated and short of sleep, so this won't be the most coherent post on here.

"To the person who told me I wouldn't amount to anything, thank you."
"Why I am grateful to the bullies who _______."

There are a few articles with this sort of theme floating about online (The Mighty seems to be one of the worst offenders for this). I'll respect that some people approach their experiences this way; that's their prerogative. But it almost reads as though gratitude is the default, healthiest way to heal. And it's troublesome.

It goes a step far in Carmen Aguirre's recent article [TW - she describes her experiences of being raped as a child] in the Guardian. She thanks her rapist for teaching her about compassion. Now, I don't want to censor her experiences or how she presents them - but at the same time, it frightens me that her words could be taken by a predator as justification for their actions. Any rational person would know it isn't, but rapists aren't rational people - they're entitled people, who will take anything they can get and some things they cannot.

The classmates who bullied me as a child didn't teach me that my individuality is worth more than their opinions. My friends and my family taught me that. The bullies did their best to teach me that I was worthless and would never be cool enough to be loved. I learned to persevere in getting the health care I needed by being affirmed by the professionals who got things right, not ignored or belittled from the ones who got it wrong. And most of all, the man who raped me didn't teach me to be sensitive to my body, be compassionate, or anything positive. I could have learned these things through joyful experiences, not rape. Instead, he taught me to always look over my shoulder, to investigate every bump in the night, to incessantly check whether the door was locked. He taught me to assume by default that people showing interest in my body were violent by default. That my body was a thing he could abuse at will. He taught me that I would never, never truly be safe. Nobody should have to learn these things. I will not thank anybody for showing me these things.

No girl should ever come of age by having her body violated.

Unmapping Empathea

This is a reflective piece that I wrote in the context of a course I am teaching. I promised my students that I would do the reflective assignment alongside them. 

Unmapping Empathea

I have a confession: for weeks, my mind has been attempting to rename this course “Imaginary Futures” rather than “Experimental Futures.” I suppose, then, it is unsurprising that one thing I have been pondering for the past several weeks is the extent of the limitations that so many people place on our own imaginations, and on our visions for the future. This starts even in childhood, with our dreams circumscribed by television programs and the admonishments of parents and teachers. One thing I am immensely thankful for now is that while my imagination was certainly reined in by the structures in which I grew up, I was cared for by adults who encouraged me to remain creative. Even so, I have recently realized that the alternatives I envisioned were hardly revolutionary.

When I was about eleven, my elementary school informed its students that we would be involved in consultations for a new playground. This would be built after I graduated, but since I aspired to become an architect at that age, the prospect excited me. I keenly missed a dinosaur-themed playground that had been recently demolished from a favourite park and hoped that we could build something similarly exciting at my school. We participated in the consultations in multi-age groups, and I remember a definite split between the younger and the older students. When asked what amenities they wanted the playground to have, the younger children asked for roller coasters, petting zoos, and water slides. The older children hoped for a good swing set, a better soccer field, and other similarly tame, traditional playground structure. Those of us in the older grades laughed at the younger children’s fanciful ideas. The parents and teachers involved in playground planning seemed to dismiss all of our ideas, stressing the need for safety above all. Though our new playground would be attractive and castle-themed, any apparatus from which a child might fall was removed from the blueprints. When Playscape 2000 was completed, it was a disappointment for many children. While amusement park rides were certainly beyond the space and budget constraints of the project, even the spirit behind those suggestions—that children wanted something exhilarating and unique—was barely considered. It may have been logistically challenging, but I certainly think the petting zoo idea should not have been so quickly dismissed.

I think of so many of the structures that we see as alternative, and realize that they still buy into some of the more restrictive elements of what they seek to undo. I spent summers as a teenager at a creative arts camp. One of their t-shirts, which I still have, includes the words “wouldn’t it be great if artists ruled the world…for then we would have art in the offices.” Art in the offices, indeed, is very nice. But what if we no longer worked in conventional offices? What if artists pushed the boundaries of social structures so that our sites of work overlapped with our sites of recreation in ways that are as-yet unimagined?

The restrictive parameters that I placed on my own imagination are clearest when I think of one of my childhood hobbies: designing and redesigning an imaginary utopian community, Empathea. Empathea started as a childhood dream, but it remains lodged in my mind nearly two decades later. It was born in the back seat of a rental car, somewhere near Haifa, Israel. My twin sister and I had just learned about kibbutzim—small agricultural communes in Israel—and wanted to expand the model on a larger scale. Our mother quickly explained that socialism was hardly a new concept, but we decided to play with it for the rest of our trip. Barely nine years old, we believed ourselves to be on the cutting edge of social innovation.

Over the course of the car ride, we hashed out the key tenets of our community. First and foremost, we knew it would be environmentally friendly. But what would that mean? Certainly, a place free of personal vehicles, such as the one in which we were riding. But what about roads, more generally? We decided that those might be necessary for deliveries, emergency vehicles, and, though we were hardly fond of this element, for garbage trucks. The space given to roads would be far outstripped, however, by green spaces: parks, forests, gardens, and backyards. Through our childhood, our backyard was our kingdom, and I don’t think it occurred to us to entirely abolish private land ownership. There would be ample public transit, and people would ride bicycles, or quadricycles if they had small children or lots of groceries. Mobility for the elderly or people with disabilities never crossed our minds at that point, and I suppose it never snowed in our imaginary world.

Over the coming years, we drew perhaps hundreds of maps of Empathea. At least one of them had a small shack on the outskirts of town, little more than a picnic shelter. This would be where people could go to smoke cigarettes; we saw smoking as a terrible offense but also recognized it as outside some people’s control. Looking back, I wonder if we were rather too sanctimonious, as we pondered what sort of punishment would be too harsh for people who littered. In some respects, our utopia was rather authoritarian, ruled according to the idealistic whims and values of nine-year-old twins.

As I grew up, I started to wonder how this town could ever come into being. Who would have the means and inclinations to reside here? Why did our childhood dream still assume that people would work in fairly standard professional jobs, live in houses, and produce garbage that would need to be carted away?  We never really considered at that point where the garbage would go, other than that it would not remain in town, or determined what would happen with people who could not work in a traditional job. But, most troublingly, we had taken it more or less for granted that we could find an available location to build a utopian community. This is the element that has weighed on me most heavily through my university education: as children, we didn’t understand that the land on which we lived was stolen, and so we assumed that it was easy enough to find more land. Indeed, on maps of the mountains where we rented a cottage each summer, there were plenty of undeveloped lakes and valleys. Of course, we didn’t want every lake to turn into an urban area, but I suppose we saw our own vision as an exception to any conservationist rule. I don’t like thinking of my childhood self as a potential miniature colonial power, but my imagination makes it clear that as middle-class white children, the colonial dispossession that granted us certain privileges was largely invisible.

We went back and forth as to what sort of terrain we would seek for Empathea. Rehabilitating the desert, following the narrative we had been taught about early Zionists? Building on a landscape that had been damaged by human use never crossed my radar screen, but now I wonder about the potential for an environmentalist collective community forming on lands torn apart by the tar sands or similar extractive industries. Over the past few weeks, situating Empathea in relation to the concept of rewilding has added further complexity to my questioning. Regardless of the terrain we envisioned for Empathea, we assumed that we would be building a community on a relatively blank slate, erecting new homes, transportation, and infrastructure. How would this change, however, if we were to resituate our idea in an urban setting, keeping but modifying the existing buildings and spaces to suit an environmental and collectivist society? Aside from making parks out of parking lots, what would this look like? And how could we rewild the people in the community, without imposing an authoritarian structure upon them?

In my early twenties, I moved from seeing Empathea as a map-able, physical space to framing it as a micronation. Some of these are tangible spaces—an island, or a private home. Others exist solely on the internet. So, I contemplated Empathea as a micronation in the form of an imaginary archipelago: small spaces, such as individual apartments, farms, or offices, connected only by their values and sharing no physical space, but surrounded by the seas of the (presumably corrupt) society at large. Then, concerned with the implication that such a model still relied on private property, I considered whether the islands could be much smaller: each island would consist of one consenting human body since our own bodies are the only spaces over which we can uncontestably hold sovereignty. Much more recently, I realized that boxing my imagination into even this model of a micronation still assumed that legitimacy comes with the model of the nation-state.

This is only one line of thoughtful concern that I now have about my aging childhood dream. I also wonder: could Empathea be an indigenized space without being appropriative and colonial? Could it be ecologically sustainable, and also accessible, following ideas of universal design, without being modernist? How do we avoid perpetuating an eco-apartheid in an ostensibly progressive community? Empathea is, on one level, unraveling, through the entropy of my constant questioning. But on another level, perhaps it is growing, as I question why it has, for nearly two decades, existed on paper, but why I have never taken steps to put it into practice. 

It's not actually about my feelings

A couple of months ago, I posted about a fellow grad student who has been harassing me for some time. He graduated at the end of the last semester, so in theory, he should be gone and the situation should be over. Not so. The first time I came to campus after the holidays, I ran into him a half dozen times. This may be coincidental rather than stalking - I have no means of judging his intent. But it's scary. He still has access to graduate office space and computing facilities, and someone in the department has employed him as a research assistant. So, I wrote to our chair to voice my concerns.

The chair met with a university conduct officer. Apparently, my options include going through human rights (tried that and failed), speaking to the ombudsperson's office (ditto), working with the campus safety officer (which I plan to do, though I'd hoped to resolve this at the departmental level) and speak with the guy's supervisor at his other job, in the hopes of changing his behaviour there. None of the options that the chair listed included anything that would change his behaviour within our department, where he is still present.

What irks me most, though, is that my chair's response focused on what could be done to address my feelings about the situation. Not addressing his behaviour, his ongoing presence. I don't need a safety officer to speak to me and try to get me to feel less afraid. I need someone to address the actions that are making me feel afraid. This is about harassment, about intimidation, about power - not about my individual feelings.

If someone was flicking a lighter menacingly at somebody's home, you wouldn't tell the homeowner to talk to the fire department about their fear of fire. You would speak to the lighter-wielder about the dangers of their actions, and potentially ban them from the vicinity.

As a woman, I will probably always be afraid of harassment. I don't truly anticipate that changing. My fear will go away when the harassment stops.

PTSD and higher education

Today, my department hosted a panel on mental health in university classrooms. Super necessary, and for the most part, reasonably informative. This was probably critical info for people who don't have much background in supporting students with mental health disabilities. The first two presenters were clear, and offered an overview of available resources that we could refer to. The last one, however, I feel was very problematic. The main part of his talk was ok - not the approach to accommodating students that I personally would have used, but it was fine. The trouble was after a faculty member asked what he thought of trigger warnings.

Our guest speaker doesn't like trigger warnings, because he doesn't find them effective. OK, I can see that, because they really aren't as effective as we'd like to hope they could be. The trouble I had was in his conceptualization of PTSD. He has been diagnosed with PTSD; so have I. We clearly have different experiences of it, but also different conceptualizations of the condition. I am distressed that he made out his perception to be indicative of everyone with PTSD.

He told us that people with PTSD are less sensitive than other people; numb. To a degree, yes, that's true - but we aren't numb to recalling our trauma. Instead we're numb to so many other things around us. He said that people who respond emotionally to depictions of trauma (and in this case his example was rape) don't actually have PTSD, but are merely upset about what happened to them. That's where I vehemently disagree. He talked about triggers as, for example, the little things - like if you're assaulted and you can smell onions nearby, you might be triggered by the smell of onions. And, yes, of course you might be. But that doesn't negate that you might still be triggered by, for example, a movie screened in class with a rape scene.

When PTSD was a challenge for me (it's not so bad recently), I could be triggered by little things that you'd never guess: things that were in the room at the time, that remind me of things he or I were wearing, smells, the pattern of the floor tiles. Things that I could run into, without warning, in a huge range of situations. They are bizarre, and specific to me and my experience. But I could also be triggered by perhaps more obvious things: the facial expression and body language of a man who knows he is about to get his way; phrases that connote pain and struggle. The sights and sounds that are fairly specific to rape or other bodily trauma. And lots of survivors, even with quite different experiences, will still find these things triggering. Think of if you break a glass: just because there are small fragments that end up under the oven that you find only years later does not negate that there are also fragments right there, under your nose. You still have to be careful not to step on any of them.

Police

A friend and I were talking today about the assaults at UBC, and how we need a coherent sort of policy/procedure for dealing with sexual assault in our department. I asked her whether she'd know what to do/who to approach if she were assaulted by someone at school; she was pretty quick in saying that she'd go to the police. And on one level, that makes sense, because that's what we're taught to do. But to the best of my knowledge, many (all?) the UBC women didn't approach the police, initially. As an assault survivor, that makes more sense to me. 

With other crimes, when you talk to the police, you are a plaintiff, a witness, and so forth. In rape cases, your body becomes a crime scene, disembodied from the rest of you. That's where the trouble is, to me, in going to the police: I didn't go, because I didn't want the terrifying scrutiny of every inch of skin that reporting would entail, when I had already been so violated. I didn't want to be a patchwork of pieces of forensic evidence, didn't want photos taken of everything that was bleeding and torn. Because once those pictures exist, you become bleeding and torn, in the eyes of the law, and yet are also scrutinized as a potential liar, with your body being what they use to judge your character and the veracity of your claims. 

It's supposed to be criminal justice, but it just feels like an extension of the crime.

Certain feelings stick like glue

Today, I went to a poetry reading - an event I normally really enjoy when I attend, and I loved the work that the poets read. However, for a reason that I'm not entirely certain about, nobody sat next to me. I came alone, but it was a packed room. There were people standing at the back and sitting on the floor at the front, and yet nobody sat down next to me. Odds are it's nothing, but after being the kid who nobody wanted to sit next to or play with, that empty seat hurt in a way that, years and years later, I can't even quite describe.

If it happened here, there would be little difference

A disturbing article came up tonight on CBC, regarding the University of British Columbia. UBC expelled one of their history PhD students this week, after half a dozen of his classmates came forward with reports that he had assaulted them over the past couple of years. It took months for the department to do anything, and their chair (a woman whose work I hold in high regard) reportedly was more inclined to cover up the incidents than to do anything about them. As a graduate student in a history department at a different university, that hit home pretty hard.

I will preface what I am about to write by clarifying that there has been no direct threat to my physical safety within my own department.

In my department, we have an MA student who is rather volatile to his peers. He is the self-appointed ruler of the graduate computer lab, accosting certain other students when we use the facilities. Over the past two years, he's hovered over me and called me an "entitled bitch" while I used his preferred computer (not his own machine, just the one he liked the best - and the only one available when I entered the room), swore at me in the halls as though it was a manner of greeting, blocked me when I tried to navigate the halls using a mobility scooter, muttered "looks like you're getting what you deserve" when I came in once with an IV line for a medical treatment. In short, he's nasty. His poor behaviour, while not physically aggressive, is unwelcome and has been ongoing for approximately two years. Over a year ago, I spoke with my thesis supervisor, our graduate chair, and the university human rights officer. Well, it's not a human rights issue, supposedly. Supposedly, there's no rule against being a world-class jerk to your peers. The human rights office suggested mediation. My supervisor suggested, after he sent me a profanity-laden email, that I ask him for coffee to see if we could work things out (I did, and his emails escalated; she was evidently taking him to be a more reasonable person than he turned out to be). The graduate chair listened sympathetically, but ultimately did nothing that I know of. Nobody followed up with me, perhaps thinking that if they didn't know about further incidents that they could pretend that everything had somehow resolved. It hasn't - I've just gotten fed up with advocating for myself, so instead I've been waiting for him to either drop out or graduate, which should be quite soon now.

The result is that, since April 2014, I have only used the computer lab when I am reasonably sure he isn't on campus, or when I'm accompanied by a friend. I avoid passing his office late in the day when there aren't many people around. Since he works at the library and a couple of weeks ago refused to check out a book to me, I now make sure I don't go to that library location on days when he might be working there. The onus has fallen on me to avoid him so that I don't have to listen to his profanity and insults. I am fairly sure that I am physically safe in the department, but I do not feel emotionally safe there, and have not for some time now.

I am not the only graduate student who has issues with this particular man. He behaves this way to a few other people, and will make quite nasty comments about a particular faculty member to anyone whom he thinks might listen.

I know that this is worlds away from sexual assault. I'm not trying to make an equivalency here. But from the complacency that I have seen from my department, and their inaction in making any sort of tangible change to address his behaviour, I can say that I have exceptionally little confidence that my department would do anything differently.

The faculty I've mentioned here are good people. I like them, and respect them. This isn't about them - if they were personal friends of mine rather than my professors, I don't doubt that they'd be doing what my friends have done (go to the lab with me if I can't avoid printing something so that I don't need to be alone with him; urge me to report incidents; listen to me ranting about the whole situation). This is about an institutional culture that has silenced even some quite justice-oriented faculty, because we work in an environment where a man moving through the program and getting a degree unobstructed is more important than a woman not being berated and harassed.

So in short, if someone predatory (or with a very skewed idea of what constituted consent, in any case) came upon my department, I truly think it would have played out the same way. The question is how to change that culture, so that we can make sure that it doesn't happen here.

Draft of a letter to the university administration

This evening, I was dismayed to learn that the university plans to stop paying the benefits, including supplementary health insurance, to union members as of October 31st. I'd be surprised if the union can afford to shoulder this cost - so what this amounts to is leaving the members who depend on this health insurance high and dry. "Dismayed" is actually a poor word choice in this context - no, I'm livid, and terrified.

See, I'm a student with significant health challenges. I have a rare disease that causes spinal cord dysfunction, and all the attendant difficulties that can produce. The benefits provided by supplementary health insurance for someone in my shoes are significant: it means being able to continue the physiotherapy that helps me walk and keeps my pain under control, and significantly, it enables me to be able to relieve myself. And hearing this might make you uncomfortable, but trust me - your discomfort is hardly my concern here when your decision is putting me in danger. For several months, I have needed to use catheters to empty my bladder, which has become partially paralyzed by my illness. These are individually fairly cheap devices, but they add up. They're not re-useable, and I need several, each day. After shouldering many health-related expenses from the past year, when my illness rendered me unable to work, this isn't a cost I can take on without significant hardship. I am sharing my individual experience, but there are many of us for whom this plan is of the utmost medical necessity. This is not a cut that affects all members equally; instead, it disproportionately affects those of us with the greatest need.

You argue that your decision to withhold this benefit is to "protect" students. I have news for you: I, like, many other members, am a student here. This benefit cut is hardly protecting me: it's putting me in danger of serious medical complications if I cannot muster the funds I need to pay for this equipment. You are willing to trade the administrative convenience of some students for the health of others, and pretend that this makes you benevolent. It does not. It shows an astounding level of arrogance and privilege - that of an bureaucrat so detached from the realities of his employees and students that he will treat essential benefits as bargaining chips. Withholding grades and withholding medical benefits are in no sense equal in impact.

One final thought about health insurance. I don't need supplementary health insurance through my work because I have a serious chronic illness (although that is undeniably true). I need this insurance because we live in a system which masquerades as having universal health care, using the spectre of comparison to the U.S. to placate us when essential services are designated as discretionary. Because health care is premised upon capitalism rather than either health or caring. Quality of life, or even life itself, should not go to the highest bidder. It is the role of the university to find solutions to social inequities, not to exacerbate them. Taking away (or even threatening to take away) this meagre safety net is cruel, and shows either a profound lack of understanding of the realities employees face, or a profound lack of humanity. Just because it is legal for you to do this does not mean that it is right.

So, I implore you to go back to the table, and bargain in good faith, without putting these inhumane pressures on the union and its membership. It would be, literally, a relief.

Tales of a routine medical appointment

I went to the doctor today because I'd hurt my foot, somehow, on Monday. No idea what went wrong, and the worst trauma I could think of is that maybe I stood on it funny. My family doctor wasn't available, so I went to student health, for what I figured would be a routine exam.

It's never that simple when you have a chronic illness that most doctors know little to nothing about.

"A bit of swelling, but no bruising. Hmm, hmm. And you have an autoimmune condition. And you take [looks at my chart and reads off the names of my medications]. Yes. Numbness? Tingling? Nerve pain? So your pain doesn't normally feel like this. Problems with your eyes or bladder? Have you been sleeping ok? Do you have a fever? No? I'll take your temperature. Open your mouth and say Aaaaah. Ok I'll just listen to your heart and lungs. What's your blood work like? Any clear explanation for those numbers? Yes? And you're not worried? Ok, fine, fine. Have you had your rheumatoid factor checked lately? Have you? You have! Ok, ok, ok. Uric acid? Urine test? All fine? Yes? Oh, that's good - maybe it's just broken."

As he's writing a requisition for an x-ray (I did check and fortunately, all he wants to x-ray is my foot), I ask why he insisted on checking my vital signs for something that's so localized to my foot. "You were here," he explains. So I get up to leave, and when I'm halfway out the door, he stops me.

"Blood pressure?"

I am lucky I left without a pregnancy test.

Half-baked policies and unstable platforms: disability and the 2015 Canadian election

March of Dimes Canada has recently released their primer on party platforms on disability issues. This could be useful for people who are still undecided voters - although I am hardly surprised on what each party has put forward in their platforms. I'll offer some commentary on the March of Dimes breakdown, then offer some further commentary rant at length.

The Conservatives offer tax breaks, useful to those who have a home they can renovate for accessibility. A non-refundable income tax credit is no good for those of us who do not own a home, or who lack the cash to pay for the renovation, or whose incomes are too low to pay income tax - a significant concern, since people with disabilities are overall poorer and more underemployed than the average Canadian. The Conservatives also promise funding to help people with disabilities to re-enter the job market, which is all well and good for some people - but woefully inadequate for many, many more. The Conservative promises are nice and shiny for people who already have money, but insulting to the rest of us.

The Liberal platform on this regard is better, but still rather flaccid. An accessible website shouldn't even be newsworthy - that should have happened ten years ago. Honestly, if you're advertising that, it means you're scraping the bottom of the barrel to look good. They're following the Accessibility for Ontarians with Disabilities Act - so basically, complying with the law in one of the ten provinces and three territories that they serve. Home mail delivery is important for many urban and suburban voters, but that's not just a disability item; lots of non-disabled people like their mail at their doorsteps too, and home mail delivery is hardly a big-ticket item in the grand scheme of things. Revolutionary social change, coming soon to a mail slot near you? I think not. Old age security eligibility is similarly just reversing a change that the Conservatives put in, restoring a not wholly adequate status quo. Showing leadership, and collaborating with provinces and territories. OK, this is something - maybe. Superficially. This isn't a measurable goal. How much will wait times be reduced? What will home care look like, when they get involved federally? The Liberal platform, to me, looks like their attempt to Not Be The Conservatives.

Disclaimer: I've always been an NDP voter, not because I'm in love with them but because I prefer them over our other options. So my appraisal of the NDP might be prejudiced - though I am inclined to criticize everybody and am trying to be fair. 
The NDP's "Commitment to Accessibility" looks good. It really, actually does. If this happens in practice and not just on paper, I like it. I'd like more detail on their constitutional provisions, and perhaps that's some research I'll do over the weekend - how specific are their goals? Can we evaluate them, one election cycle from now? As for their platform, it's leaps and bounds ahead of the Liberals or Conservatives, in my opinion. Still, we're seeing little boosts here and there, rather than major, systemic change. Again, what will home care look like, under the NDP? More on that later - home care is a pet peeve of mine, because of its inadequacy. The housing strategy could be big. It could be peanuts, but at least they're offering something that would be good if they managed to implement it successfully. A girl can dream.

The Green Party's platform also looks promising, and I only wish they got more widespread support so we could see their policies in action rather than just in discussion. I would love to see a Canada Disability Act - something with the potential for major, systemic change. Similarly, a national equipment fund, if it's adequately funded of course, would make a difference for a great many people.  And they are the only party to touch dying with dignity as an election issue. So we have two parties offering platforms that could get us somewhere. Maybe. But is any of it enough?

I wholeheartedly believe that even the NDP and Green platforms, which are far more robust than the Liberal and Conservative platforms, offer too little to people with disabilities. I want to see more.

A few policy changes that have to happen:
- If disability means you work only part-time, you may not qualify for EI, even though you pay into it. So then what good are the disability provisions under EI? Or CPP-D? I want to see minimum hours-in-a-year eligibility requirements waived for people whose disabilities prevent them from working enough hours to qualify. This would, for instance, enable someone to work a few hours per week, then take a few months off for a surgery, a relapse, a rough patch, pregnancy, whatever. At the very least, low-income people who would never qualify for EI due to a disability should be exempt from paying into it. It's only fair.
- Presently, people applying for provincial disability assistance first have to apply for regular income assistance (in at least the provinces I'm familiar with), and then wait. And wait. And you have to be skint to qualify. So if you're saving up for a down payment and find yourself disabled, you have to clean out your savings first - and then never save up large amounts of money again, which is super fun if, say, you're saving up for the medical equipment you need because you have a disability. If everything were covered, this wouldn't be as huge an issue - but not everything is covered, and not everything is covered right away. If you live in a different city from your medical specialist and have to fly down for an appointment, that costs a lot of money, and paying up front can be tricky if you haven't been allowed to keep enough money in your bank account to raise funds for a trip. Plus, people with disabilities need to save for a rainy day. Refrigerators and cars break down; relatives die across the country. Savings are a good thing and Canadians are constantly told to save, save, save - yet if you're on government income assistance, savings are banned.
- Home care. That's another thing that's hard to get coverage for. If you can bathe yourself, they think, you can look after yourself. Except if you ask even just a handful of people with disabilities, it'll become abundantly clear that while that's true for some disabled people, it sure isn't for others. Even at my worst, I could always bathe myself. It wasn't dignified, but I was still independent. But cook? Whoever said that bathing was harder than cooking and the necessary housekeeping one needs to do in order to live in a hygienic home either bathes in a fancy circus pose or has a fully automated kitchen and a robot to do everything else. Ability to bathe is a low bar for assessing eligibility. That, and when you become newly disabled and seek services, you wait, and wait, and wait. I put in calls for help at home in October of 2014, and I'm still waiting. I waited for so long that I no longer needed the services. So, most of the parties are talking about home care. What are they offering, and to whom?

We also need a national strategy for paraprofessional care, drugs, and equipment. CBC's The National discussed this last week. Did you know that Canadians pay for-profit drug companies astronomically more than New Zealanders do, for the same drugs? I was blown away. Watch the clip. That's also where half of this rant has come from, for what it's worth - it's just been percolating for the past week.  The panelists talked, among other things, about a national drug strategy. There are so many things that we need covered that aren't covered, or that aren't covered enough. So here's a few:
- Yes, many provinces cover prescription drugs for low-income people. But moving between provinces gets everything all gnarly. For instance, I can get all my regular medications covered when I'm in British Columbia. But if I travel elsewhere, which I have to for my work, I can't get prescriptions covered there. Bringing medications from home works when everything goes as planned, but when you have an illness or disability, that doesn't always work out. This spring I had to buy a medication that cost $80 for a supply that lasted three days, and because I was in Ontario, BC wouldn't cover it. My supplementary health insurance is tied to BC's Pharmacare - so if Pharmacare says no, other insurance says no, too. The same thing happens with paraprofessional coverage: the limited massage and physiotherapy that I can get in BC vanishes as soon as I cross into another province. Plus, not all provinces cover the same medications. Move to another province, and suddenly you're filling out special authority forms for drugs you've always gotten without hassle, or testing out alternative medications when the old ones are more expensive.
- Access to drugs. Canada is still waiting on our Orphan Drug Regulatory Framework to help people access medications for rare diseases. Off-label drugs for rare diseases are also hard to get coverage for. Getting treatment feels like doing a steeplechase. Eventually you give up and start sunning yourself between the jumps, and hope for the best.
- Medical equipment. Super fun stuff. Need leg braces? If you're over 18, BC's Pharmacare program won't cover it. Those can be expensive. Even custom orthotic inserts for shoes are a few hundred dollars. Oh, how about catheters. Let me tell you a fun thing about those: that can cost about a dollar each. Some people need four of them a day. That's $4 a day, just to pee. If you need to self-catheterize and you don't, you're at risk of serious bladder and kidney damage. It's medically necessary. Pharmacare coverage? Nope. BC Pharmacare covers ostomy supplies, so anybody who's had bowel or bladder surgery gets coverage for supplies, but if you don't meet that eligibility criteria, your supplies aren't covered. Because we all know people buy catheters in vast quantities just because people think catheters are cool. Catheters and various continence supplies can be covered by the ministry, if you get disability income assistance, but they insist that you have no other resources - and the definition of "no other resources" is very, very harsh. If you're a student, it's supremely difficult to get this stuff covered. We need a national strategy that will fund everything that is medically necessary.
- Paraprofessional services. If I weren't from a middle-class family that could pay for physiotherapy costs, I doubt I'd be walking now the way that I am. Physiotherapy, massage, speech and language, counselling - and lots more. These are hardly frivolous, but they're also hardly covered. In some provinces, you can wait for eons for a few sessions that are funded. In BC, you can get physiotherapy relatively quickly, but only part of the cost of each session is covered - so, if you don't have a good $100 per week to cover the un-funded portion, tough. You don't get anything. And of course, only the first ten sessions get this partial funding, which isn't enough for people getting treatment for anything severe or chronic. And can we talk about podiatry? If you have certain problems with your hands and need a simple surgery, that's covered. More or less the same thing with your feet would be done by a podiatrist, and they're not covered. Just like medical supply coverage cares about bowels more than bladders, apparently the powers that be really just hate on feet.

It's 1:30 AM, I've just concluded that Canada hates feet, and perhaps it's time to stop ranting for the night.

"You can watch"

This is at once a story and a rant.

Earlier this week, my sister and I travelled to Squamish, where she planned to rock-climb and I planned to tackle a popular hiking trail. After booking the trip, she told me that the trail that I planned would be too challenging for me, and that I should do something easier. That leaves me with little; the best hikes in the area are somewhat advanced, or involve riding a gondola to them (we'd budgeted for that for the second day of our trip, together, rather than for our solo days), or are really quite similar to what I'd done previously in Vancouver, or simply pale in comparison to what I had done previously in Whistler - and frankly, none of the remaining hikes were the one that I had planned to do when scheduling my summer to accommodate this trip.

There are forest fires nearby. The BC forest fires have worsened air quality dramatically in some areas of the province, Squamish included. The mountains receded into a cloud of particulate matter that infiltrated my lungs, leaving me wheezy, dizzy, and too weak to hike at all. I want to go home; it is too hot; it is too dry; it is too everything. I resigned myself to a day in the air-conditioned library, just to breathe. There is nothing for me here if I can't be with the mountains.

"You can watch me climb," she says, in a text.

You can watch. You can watch. Three simple words, ostensibly stating what I can do, yet an implied proclamation of what I cannot. I can watch others do what I ache to do, and what I can no longer do. I don't know if I'll ever be strong enough to climb again, and have given away my gear; it's easier to make peace with that away from the rock walls. So I cannot climb; I can merely watch, waiting for a turn that won't come.

You can watch. A friend described those words as violence. Yes, violence - it excises intentions of doing, planning, trying, hoping; instead, implants stagnation, life on the sidelines.

"You can watch." It is less an invitation as an evaluation of what is worth watching - of whom we bother to watch; when we watch; why we watch. Unintentional, but only because what we watch is coded into how we view people and their activities. Why watch writhing, weeping, wilting, waking, worrying, wanting? Disability is invisible, except when it is hyper-visible.

This summer, my mother has started snapping candid iPhone photos of me doing perfectly ordinary physical things that were easy before I got sick, impossible a few months ago, and are still now somewhat challenging. With a disability, people watch because it is exceptional that this person is doing a particular thing. When someone does not have a disability, people watch because the activity is exceptional, or it is performed with exceptional skill in relation to humanity in general. Speed. Artistry. Finesse. Who applauds a non-disabled woman who swims, slowly? walks with trepidation down a log? makes a simple salad? We applaud the ordinary when it is performed by children. When we watch, when we suggest watching, we judge. I love children, but don't want to be judged, again, as a child.

Disability, invisibility

I've spent the past two days at an academic conference (it's been excellent, thanks for asking; probably among the best I've been to). I also went to two conferences earlier in June. An odd thing has happened, on more than one occasion, at both of these events: running into people whom I'd met at a previous conference in November, while I was having significant mobility challenges and using my scooter, and finding that they had no idea who I was. Now, I'm the last person to criticize people for not recognizing others, ordinarily; I've had embarrassing incidents where I don't recognize people I know reasonably well: my (lifelong) dentist, friends, the person I was dating, my thesis supervisor. But this, I feel, was different, and speaks to something that seems to happen with disability, particularly when mobility aids are involved: suddenly, you become a wheelchair, walker, or scooter, rather than a whole human being.

The incident today can illustrate all three moments when people didn't recognize me, though perhaps it was the most extreme. I ran into someone who was on my panel at the November conference. [Since nobody reading this was actually at my panel, here's some context. There were just three of us on the panel, plus a moderator, and two audience members. It was a small room, so involved lots of discussion amongst five of the six of us who were present (the sixth texted for the entire time - but that's another story for another day!). Three relatively interlinked papers, a half-hour question period where presenters got to ask questions of one another (this doesn't happen often, but was perhaps a bonus of having such a pithy audience). So needless to say, remembering who the other people are should be a given, even if the name or face is initially a hold-up.]. I say hello to her, and get a blank look; remind her who I was (hi, I'm [my name], from [university]; we presented together at [conference] last fall). She looks perplexed; asks if I'm mixing her up with someone else. No, I'm certain that I'm not. So I tell her about the panel - its egregiously early timing for a Saturday, small group, how we all came together with cohesive papers despite having never communicated until that day. Then she seems to recall who I am: "oh! were you the one with the scooter?"

The one with the scooter. This might sound like a neutral statement, but to me it is anything but. I could have been the one who talked about whatever aspect of my paper she may have found memorable; the one who asked her a range of questions about her paper; heck, even the one whose own mother, awkwardly, happened to be our only vocal audience member, and who rather took her to task during question period. Instead, I was the one with the scooter. Not an academic, a presenter, a colleague, or even a woman, a person. Just "the one."

When I used my scooter, people recognized me, from day to day, on the bus. Except, they didn't - they recognized my mobility aid, and the vague shape of the person it carried. You can't blend into the woodwork when you beep each time you reverse, take up time and space any time you go, well, anywhere. To people I met briefly, I was the scooter, and the scooter was me. I was paradoxically both hyper-visible, and invisible.

I admittedly don't know where I am going with this thought, but it is something troubling that I need to remember to think about further.

Progress?

Facebook has a function that brings up posts from a year ago - or two, or three, or more years ago - perhaps for the little historian in each of us. For me, that one year ago is a hard thing to look back on. I just filled out a progress report for school detailing my activities over the past year, and it's the tip of the iceberg. I can't tell my funding agency what I've really been up to.

Last year on April 13th, I went on a run - 10 km in an hour and 15 minutes. A few hours later, I posted on Facebook that typing for so long while doing my comprehensive exams was hurting my back (I thought it was fatigue, from so many long days on a terrible desk chair). On April 14th, my right leg stiffened up and started to shake uncontrollably (I thought it was anxiety, as the first of three exam deadlines approached that afternoon). On April 15th, I was in enough pain that it was hard to turn my neck or torso, or lift my arms. On April 16th, I tried to go swimming, but couldn't. On April 17th, I went to the doctor, who referred me to a neurologist. Over the week that followed, I lost feeling in the right side of my body. On April 23rd, I passed my oral exams, doped up on narcotics from the pain, hoping my committee wouldn't offer to shake my hand, since I couldn't move my right one. By early May, I'd regained feeling, but my gait was unsteady, and I was still stiff, tired, and in pain. I went to conferences and spent time in the archives, doing my best to not let people see how I felt. In June, my pain kept marching on, but my legs didn't. On June 19th, they said I probably had MS, and gave me five days of steroids. I cried for the rest of the month whenever I was alone, and tried to convince other people that I could handle this. Through early July, I gained my strength back, running a few steps for a bus, walking without a cane, and thinking that I'd seen the worst of it. At the end of the month, I relapsed again, losing some vision in my right eye and becoming unsteady, once again, on my feet. More steroids. The paranoia from steroids was so bad that I vowed never to do that again. In early August, I went hiking again, dragging myself through a valley with a pair of hiking poles and the sort of stupid perseverance that can only come from a steroid high. Then I did the MS bike tour, raising $2500, winning a coffee maker that I donated to the steroid clinic, and exhausting myself thoroughly. Two days later, I relapsed again - couldn't pee, my pain skyrocketed, and my left hand felt weak. I refused steroids, thinking it would get better over time. I got a brace for my clumsy right leg, and started on medication for neuropathic pain. I started to pee again, a few days later, but couldn't control it properly. I bought incontinence pads, and cried. In September I went for an MRI, relapsed the next day, with my walking getting less and less steady. More steroids. More pain. More medication. More paranoia. My mood plummeted. I attended a friend's party on so much medication that I could hardly stand up straight, and went to meetings that I can't remember, and for which my notes are illegible. I started writing my thesis proposal when I had spurts of energy. I joined a new choir. Then they said it was probably not MS, but NMO, which was even worse. I thought I was going to die; on bad days, sometimes I still do. They prescribed steroids and immunosuppressants. I felt lucky that I could still walk. In October, I relapsed again. My eyes hurt, and everything tingled. They gave me even more steroids than before. Every day my legs became weaker, until I bought a walker just so I could get to the bus. Then I couldn't swing my legs into the bathtub to sit on my shower stool. My muscles spasmed and released, spasmed and released, and I couldn't take the pain. I went to the ER, alone, for one of the lowest nights I have ever had. I have friends who would probably have come, but I didn't feel worth calling them. Doctors sent me home, giving me nothing for pain. My pain control was cats. My physiotherapist suggested I get a wheelchair. I couldn't push myself in a wheelchair, so rented a scooter. For days, I was ashamed to ride in it, because I didn't feel like my weakness and pain were real enough for me to need it. A new pain medication helped with the spasms. I was incontinent, and sometimes it was obvious. My friends have tact, and stayed silent. I slept more than I stayed awake, but at odd hours, and fitfully. I broke down in front of a friend, convinced I'd never survive much past the end of my PhD unless the relapses stopped; she couldn't reassure me that I'd live, and we talked about how a thesis could be a legacy. I gained 10% of my body weight. I broke down, every day, and laughed giddily, over nothing, on the same days. I kept going to tai chi class, unable to lift my feet off the floor. One scooter broke; the next got a flat tire. I presented at a conference, learning how inaccessible my hometown was. I tried to persuade my family that I was fine. I wanted to die, and wanted to live, both so badly, at the same time. The MS clinic physiotherapist said that walking wasn't a realistic goal. All the best disability politics can't help with that sort of life change. I told people I was fine so much that many of them stopped asking. One friend stopped seeing me, and I still don't know quite why. I started weaning off prednisone, bringing joint pain and nausea and fatigue that squashed my mood. Back to the ER, for nausea, but they gave me a psych consultation then did nothing. I returned the scooter, since it was too expensive. Got a new physiotherapist, who said it was worth working on walking, rather than renting a scooter. Physiotherapy was so hard, and so painful, and so discouraging. For Christmas break, my family pushed me about in a wheelchair on holiday, so I'd have a chance to see anything. They went on a walk across a footbridge, and left me behind, because I was so slow. I wanted nothing more than to run along that bridge - and jump off it. A few days later, a friend killed herself, and I promised myself that I wouldn't. So I worked on my thesis proposal, word by word, page by page. I did physiotherapy exercises until everything hurt and I collapsed, day after day. My social worker suggested accessible housing - a kick in the shins, when I was finally becoming more mobile. I went back to the swimming pool, where the old ladies saw my walker and told me about their bad knees. I gave another conference paper. I wet the bed. I lost some of the weight I'd gained, more from nausea than any sort of diet or exercise plan. I made hundreds of paper cranes. I stopped using my walker. My eyes still hurt too much to read. I went on a prednisone-fueled hike, slowly, slowly, and got stuck on a trail after dark. I broke down, day after day. I defended my thesis proposal, sick as a dog, and cried for two weeks afterwards - despite passing. I walked more, each day. I stopped needing the cane for short walks. I started weaning off pain meds, preferring pain over side effects. I psyched myself up for a urology test to get to the bottom of my incontinence. I started taking medications to help my bladder. I started running again. I started to read again, and to work almost normal days. I got back on my bike. My pain is still here. I've mourned my mobility, my hobbies, my friends, my career, my freedom, my independence. I'm still here.

How was your year?