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?

Prednisone, in poetry/bastardized song lyrics

When I find myself in times of trouble
And drag my ass to Dr. T
His prescription pad is ready
To tell me:
A higher dose of prednisone
Should help maintain stability.
Like a cat in a cone,
So gloomily,
I count the bitter pills to swallow
(The plastic bottle stares at me).
The side effects will follow,
Eating me. 
Prednisone, prednisone,
How you make me gripe and groan
I don't want to date you,
Prednisone.
Gastronomic misadventures.
Insomnia. Anxiety.
If one day I need dentures...
Oh, bite me.
My mind is in a nuclear meltdown
My pants won't fit an inch of me.
NOTHING RHYMES WITH MELTDOWN -
Leave me be.
Prednisone, prednisone,
I'll make sure you die alone
I really truly hate you,
Prednisone.

Funding a PhD with a disability: it doesn't add up

In progress and subject to editing.
For those unfamiliar with the abbreviations, a brief key:

CGS - Canada Graduate Scholarship, a fairly generous doctoral award 

SSHRC - Social Sciences and Humanities Research Council, the body that allocates funding such as the CGS

OSAP - Ontario Student Assistance Program (migrating from place to place means my loan eligibility is still in Ontario

CPP-D - Canada Pension Plan for people with disabilities, essentially giving you your pension early

EI - employment insurance

I've done all the right things, but my disability has left me in a financial pickle. I am not eligible for any student loan funding, because I hold a doctoral CGS. On the surface, this seems reasonable, because my funding exceeds the cost of tuition and living expenses. However, this is a challenge, because I have a physical disability. OSAP ineligibility makes me also ineligible for government funding for students with disabilities that would provide me with the equipment (for example, an ergonomic workstation) that I need for my education. While my peers in receipt of the same scholarship can use their SSHRC funding for tuition, living, and research expenses, I must also use it to pay for mobility aids, massage and physiotherapy. These are not fully covered by my insurance.

There is a critical flaw in how disability funding eligibility is calculated. These disability grants provide significant amounts of money: $2000 annually for any eligible student, not tied to particular expenses, plus up to $8000 annually to cover disability-related educational expenses). One applies through a provincial student loan program (in my case, OSAP). Student loan eligibility is calculated based on income and tuition - it does NOT take into account other expenditures, such as disability-related costs, that aren't part of a usual frugal student budget. If I were eligible for $1 of OSAP, I would get $2000, plus funds for up to $8000 in products and services (students use this for specialized software, equipment, tutoring, note-taking, etc). Even without drawing from the second fund, one dollar of eligibility would add $1999 to my income, whether or not my disability were one that resulted in additional expenses. My disability-related expenses easily exceed $2000 this year, and I cannot predict what they'll be in the future. If disability expenses were included in the algorithm for OSAP eligibility, I'm fairly sure I would be eligible for funding. I'd reckon a great many students are ineligible for these programs because they are in financial need because of a disability, but would not be in financial need without a disability.

Some of my expenses sound like luxuries, but with a disability, they are not. For instance, sometimes take-out is the only way I can get dinner, if I am too sick to cook; taxis fill in the gaps if I am in too much pain to take transit and need to get somewhere - such as the hospital - at short notice, and a house-cleaner is necessary as I am only now, after three months, becoming strong enough to lift my vacuum out of the closet. My additional disability-related expenses mean that, were it not for a middle-class family that chips in for medical expenses, I would come short on my rent payments. It is not fair that, when someone has a disability, the burden is placed on their family in this way.

When it is time for me to travel to Ontario for research in the archives, if I am not able to walk and climb stairs reliably by that point, I will likely have to spend more for accessible accommodation, and pay to take taxis where the local public transit system is inaccessible. Since the travel funding provided by my department does not cover the full cost of travel, and since I am using all of my SSHRC income for day-to-day living and health expenses while in Vancouver, I anticipate having to take out a line of credit (at a higher cost than a student loan) to conduct the research necessary for my PhD.

Being a student puts someone in a weird middle ground when in terms of government benefits. I have had to stop teaching this year, for health reasons, but I am ineligible for EI or CPP-D (despite paying into both with my teaching income) because two semesters as a teaching assistant is slightly less than the minimum threshold for eligibility for these programs. The many hours of work that I do as a student is not counted as work in this context - so even though graduate students who are also teaching assistants work for at least 40 hours weekly, for the purposes of EI (in)eligibility, it is as though we only work for 10. Notably, SSHRC stipulates that award-holders should limit work to 450 hours per year, but the minimum hours for EI eligibility far exceeds this in most provinces. This also leaves us in the lurch if we graduate and have a short dry spell before finding a job in our field, or need parental leave. If I were given the chance to pay into EI from my scholarship income, and thus be eligible for disability or maternity leave, I'd jump for it.

To further complicate matters, I made a decision upon first receiving my SSHRC funding that I thought to be financially prudent: for my first two years of funding, I put a significant percentage of my income into GICs, knowing that my funding would run out before the end of my PhD studies. I've laid out my GICs so that I would get payments each semester, effectively spacing out three years of funding over five years. At present, I could break some of these investments early. There is a financial penalty, but that's not my main concern - instead, I worry that by withdrawing this money early, that I would be using up funds that will be critical to me finishing my degree when my funding runs out. My disability is slowing down my degree progression already, due to physical challenges such as pain and fatigue, and logistical ones such as time traveling to and attending multiple medical appointments each week. I am concerned that in the later years of my program, when I should be working full-time on my thesis, that I will have to teach to earn income that I would not need were I a SSHRC recipient without a disability.

This all seems like a rant of a very privileged person. Indeed, I'm in an enviable situation in terms of the funding I have received, and I know that many people - with and without disabilities - make do with far less. For what it's worth, I believe that all graduate students should be guaranteed a support package that will enable them to finish their degrees in a timely fashion, while living like (frugal) adults. But there is nothing enviable about the health situation I found myself in during the past few months, and the financial consequences that I've encountered. Students with disabilities are at the nexus of a medical system that doesn't sufficiently cover auxiliary services such as massage, physiotherapy, and podiatry; a student aid program that puts many of us at a disadvantage to our peers; and broader social policies (such as surrounding EI and provincial disability support programs) that severely limit eligibility.

Before taking her life, Nel asked if I had pierced ears. I don't know how she didn't know that I do. We spent so many nights with our ears on one anothers hearts. I'll never know why she wanted to know, when the end was so near.
It haunted her play characters that someone could die, without their loved ones knowing what their favourite flower was. It's odd that I never asked - Nel, what is your favourite flower?

It is odd how intimacy is like a range of undersea mountains - you know some parts of a person with so much depth, and other parts with so little.

Satan's tic tacs

I'm withdrawing from steroids. This makes me miserable - sensitive both emotionally and physically, and in continuous pain. But that's not really what I'm writing about today (though the title of this post is playfully referring to what one NMO mom calls the steroid pills her son takes).

The NMO Facebook group that's been an important source of support for me is very religious. I doubt that most people in the group are particularly evangelical, but there is a critical mass that affects the overall character of the group. I am not the only secular person who's mentioned feeling alienated as the group more and more closely resembled a prayer circle around the holidays, and particularly when a couple of members were critically ill or had passed away. 

Prayer was a sticking point. As I've written about before, I emphatically do not like when people pray for me. After one thread when people talked about Satan when a member posted about losing her faith, and another when a new member said she felt alienated in the religious environment, and another when I asked for support and received prayers and even a recommendation of videos of evangelical preachers, I suggested a compromise to the group that I thought was really reasonable. Pray for people who ask for prayers - don't for people who do not (and a similar principle could be exercised for cat photos, hugs, whatever). The responses I got were upsetting - disturbing, even. 

There seems to be a chasm between the mindset of religious people and my own mindset. A few of them said that offering prayers was the only way they knew of to comfort someone. That really doesn't sit right with me - how did prayer and compassion become so synonymous? What about listening to one another; telling stories; sharing songs, poems, photographs? Of course, to them, it is just as unfathomable that I find prayer upsetting. The disturbing part, though, was how snarky people became. I ended up in hysterics (on top of the pain I was already in) and terrified I was about to lose one of the only places where people really understood NMO.  One moderator insisted that I was suggesting censorship, and then declared that the thread was closed to further posts. As my temperature rose (literally - I was quite feverish) I definitely posted some incoherently upset comments. I'm not proud of myself for staying on the internet rather than looking after myself, but once I'm in a comment war, I stay until the bitter (and this really was bitter) end. 

It was a nasty evening. Now, it is as though it had never happened - mostly. I don't feel safe posting in that group when I'm really struggling, and I'm sure there are other members walking on eggshells around me. It's not a safe and supportive place for me anymore. It all leaves me trying to sort, iron, and fold my thoughts about religion and compassion, but it's hard to find the mental space to do that when all I can really do is cry. 

Silent; invisible

More poetry, about being 14 and losing my vision, in what was likely my first NMO attack. Doctors at the time diagnosed me with conversion disorder, but I think it was the experience of being tested and tested and tested that led me to have dissociative experiences. Were they diagnosing the emotional response that the illness and testing produced? I suppose this is why I always chat with technicians during procedures - it reminds me that all of me is there.

When my world went invisible
the doctors went silent
and I heard whispers between my heartbeats
and searched for songs in mechanized beeping.
And I became silent, invisible
as they glued and unglued
electrodes, sensors
separating my brain from my mind
(assuring me they were "watching my brain, not reading my mind")
in a quest for the invisible, or silent
scars that made me blind.
They said these tests would be painless
but they never assessed
the pain when they still were silent
and my world was still invisible,
and the pain of teaching my fear to be silent, invisible.
And I stayed silent,
made my body invisible, segmented, and still
so they could numb my blind eyes,
restrain my fingers even though they were trained
not to interfere with the needle in my vein.
So I learned to be patient and watch the closed door
and knit cheerfully in the waiting room, intact,
as they pushed pieces of my body into machines
to see more of me
than I could of myself.
Each mistaken medical dictation 
broke their silence, breaking down
each fragment they held custody of
decomposing me
leaving little matter to matter
in an invisible autopsy.

That was an intense one to write. I am still working through a piece about how that period made me feel so crazy, for so long. Sometimes I still feel that I'm "just crazy" and that even the nausea is just a trick. Apparently that fear is so entrenched that, even when I'm totally aware of it, the side effects of a chemotherapy drug can't quite dislodge it.

Welcome back to the city of stairs

It was since moving to Vancouver that my mobility has significantly declined. The city has been variable in terms of accessibility, but even without walking, there are places to go, and ways to get there. There are headaches and many bumps along the way, but even when my mobility was at its worst, this city still felt like mine.

Toronto was once mine, too, as I cruised past stopped traffic along the bike lanes on Davenport, jogged up the Spadina steps, and rode on streetcar after streetcar, escalator after escalator. I could wait too long for a table in any café in the city, and pay too much money for a croissant and americano. I know the subway system like I know the constellations of my own freckles, and I don't remember when I last checked directions before grabbing my bike helmet. Toronto was my oyster - my home.

Returning for a visit with clumsy, spastic legs, I feel like a delinquent teen locked out after curfew. I remember every dissonant chord of the southbound subway entering St. Clair West station, as I drive a borrowed car to St. George, the nearest stop with an elevator. I cut short my afternoon on Roncesvalles after going from one restaurant to the next and realizing that when the banks are closed, there may be nowhere to pee without descending the steep, harsh steps that lead to the basements in Toronto's older neighbourhoods. The car stops behind a streetcar. As a child, I ran for the seats in the very back, to look out the window at the cars behind us on the tracks, as though the streetcar was pulling a small train.

A semi-accessible transit system might as well not be accessible at all, as it forces me to drive, and to see the city from within a small steel and glass bubble. On my bicycle, I could smell them maple trees in the spring; the Portuguese bakeries on Dundas, subtly different from the Italian ones on College. Every station on the Spadina subway line is imprinted with my memories - but the rush of excitement from arriving at Museum is muted when I can no longer get beyond the platform. What used to be home is now a city of stairs.

Vancouver has fewer memories, but with a transit map and a scooter, the city can be mine. Back out west, every ramp and every elevator welcomes me home.

I want to come home
soaked to the bone
clammy, sopping
pants dropping to the floor
after cycling in a downpour.

I want to wake up
refreshed and sore
gentle stretching
focusing breath on the core
after running one mile more.

**

On bad days, I cannot write at all
beyond hammering circles of words around words
incoherent rhymes
in margins of forgotten readings
scraps of papers folded
into cracks of my crumbling self.

An n of one

Another tough one to put down in words. On Monday I had a follow-up appointment with my neurologist to discuss my MRI and various other test results. There's a lot that's inconclusive - apparently my body doesn't follow the rules of how to be healthy, or how to have any particular illness! There's a lot that it's doing that's suggestive for MS, but a lot that isn't. Dr. T. believes I have something called neuromyelitis optica. It's similar to MS, but not quite - it affects the eyes and spinal cord rather than the brain (this is what my MRI shows) and is usually more aggressive (luckily, I haven't had the sort of acute transverse myelitis that some NMO patients have - that's what was giving him pause in making the diagnosis).

The statistics for NMO are terrifying. I made the mistake of going home from my appointment and reading medical journals. One of them gave a five-year survival for NMO. Lots of sources talk about percentages of people who are blind, paralyzed, and incontinent after five years. That's really different from MS, where everything I've read reassures that life expectancy is near normal, and pamphlets remind anxious patients and families that most people with MS actually don't need a wheelchair, or at least not for a long time. Reading those articles made for an emotional evening. After a few hours, all I could do was hold the largest cat, shake, and heave. Eventually I took a double dose of sleeping pills so I could just pass out.

I always tell my students to be suspicious of statistics. Many of them, especially those in the sciences, see primary sources or articles with numbers in them, and evaluate those sources as more reliable than ones without stats. I generally approach that by telling them all about how the 2012 PhD cohort in history was 100% left-handed; has a twin; sings opera; other details about me that are not universal among my peers. Eventually, they get suspicious, and I fess up that I'm the only student who started the program that year. I can try to draw big conclusions, but none will be particularly reliable with an n of one.

Luckily, a few people on an NMO Facebook group that I found told me that the prognosis statistics are far out of date, anyways. For those on a good treatment plan, those statistics basically don't apply. There's nothing current in the medical literature that will say how I'll fare in five years, ten years, twenty years. Once again, I'm an n of one. That's not exceptionally reassuring, but I'll take what I can get.