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.

Cats have belly-buttons too

Anybody who knows me, even a little bit, probably knows that I'm nuts about cats. I foster, and spend a reasonable amount of time at the cat rescue, conveniently down the street from me. This isn't a selfless act, really, but something I find immensely fulfilling.

Today was a hard day, but also the best day. We had an intake of 20+ cats, all arriving in a span of about 20 minutes, transferred from another rescue. What I anticipated being a quiet reception shift (taking inventories and greeting foster families as they picked up cat food - that sort of thing) was a whirlwind of cats, kittens, and more kittens. I spent most of the day looking after a litter of six kittens whose mother had become too sick to feed them; at just four weeks old, they needed to be bottle-fed, but were not strong enough to drink. Four of the six were very, very fragile, and we weren't sure if they'd survive the afternoon. Luckily, another volunteer was adept at syringe-feeding kittens, and probably saved their lives.

Nursing a litter of seriously ill kittens ought to be stressful. Yet, this spring, taking in newborn kittens and bottle feeding them has been a way I've coped with stress. There is something about the chaos of twenty cats, sick cats, fragile newborn cats, that oddly acts as a form of stress relief, obliterating all other stresses by their very needy, fuzzy presence. Nothing else mattered in the world today while I focused on these four little lives.

This spring, I was diagnosed with multiple sclerosis. Just days after receiving that overwhelming news, I was getting daily steroid infusions as an outpatient to help me go into remission. So I went home in the evening, picked up a litter of kittens, so small their umbilical cords were still attached, and bottle-fed them to keep me company overnight. I have good friends, but felt weird asking if any of them would sleep over to distract me through the maddening insomnia that comes with ridiculously high dosages of steroids. It's an odd juxtaposition (juxtaposkitten?), feeding palm-sized kittens with an IV line, but that's what kept me from losing (what remained of) my mind that week. They give a sense of normalcy - in what feels like an endless cycle, already, of unpredictable relapses and incomplete remissions, the needs of tiny kittens are constant and fairly reliable. Feed, help it pee (very young kittens need help with their rear-end bodily functions), burp, cuddle until it's purring and ready to go back to sleep. Repeat with next kitten. Four hours later, do it all again. It's OK that I wake up at least twice in the night to struggle to pee - so do they. They're a distraction through the monotony and heartache of being sick, and something to take care of, when I feel powerless to heal myself.

Even before MS, taking care of cats was a relief in my PhD-stressed life. History is depressing, and escaping from the troubles of the past by reading the news is necessary for some perspective on the present, but frankly it's equally stressful. Sometimes it feels overwhelming, how many problems there are - and I've struggled with the reality that I cannot single-handedly save the world. Working with cats doesn't quite allow me to sleep soundly. But at least there is a sense of fulfillment - one which is rare and fleeting in my academic work - that I've accomplished something, when a shy cat purrs and settles in for its dinner and warm bed.

But hey - cats don't just need people volunteering: they also need funds. Trouper was the first bottle baby I ever looked after, and he's now thriving in an adoptive home. You can donate to his fundraising page here. Warm fuzzy feelings all around!

Thus concludes an immensely navel-gazing essay about cats.

Earthquakes

In Vancouver, we wait for the "big one," never knowing when it could come, nervously joking about it at parties when the small talk has run dry but the wine hasn't. And beyond stashing bottled water and batteries, there is precious little we can do.
And I live, perched permanently in a seismically unsound body, not knowing which rumblings will cause life as I know it to crumble, too numb to feel the aftershocks.
[I am afraid that one morning, I will wake up and never feel my legs again, never having had the chance to say goodbye.]

Corsettree

This is a piece I made to try to illustrate how the spasms around my ribs feel. Constant tightening, pulling, squeezing - as though I'm wearing a corset, or perhaps my sister's bra.
Medium: watercolour pencil (I love them! Paint with no clean-up) on sketchbook paper.

Please don't copy/repost without permission!

Nonspecific

This one's a saga.

I have two previous MRIs that show "bright spots" that may be benign, or may be evidence of a neurological condition. Last month, mid-way through some major academic exams, I had neck pain and electric shock sensations, and went to the doctor. She referred me to a neurologist. In the days that followed (all while writing my comprehensive exams!) I lost feeling in my right arm and leg, as well as my balance. I used a cane to walk for a couple of weeks, because I was afraid I'd trip over my feet and go flying.

Now, my balance is back and the feeling is back in my arm and leg, but my legs are still super stiff. It feels like I've gone on a long run without warming up or stretching, and it's felt like that for days. Stretching sends my muscles into spasms.

I have an appointment with the UBC MS clinic in June. I'm nervous. I've been told by a previous neurologist not to worry, but it's hard not to worry. I'm trying to avoid the temptation to google the symptoms I've been having, as I don't particularly like the results google turns up.

This has been going on for a few years. I've seen a lot of neurologists, and neuro-ophthalmologists,  and all have the same opinion: that my symptoms are nonspecific, my lesions are nonspecific. The thing is, they're nonspecific, but uncomfortable, painful sometimes.

Starting from the beginning...
In 2002 I lost my vision suddenly in geography class. I was 14 years old and had just started at a new school. My grandmother had passed away that summer. I was in poor emotional shape, and even poorer at communicating my emotions. A throng of ophthalmologists and a battery of tests later, they concluded that it was stress - conversion disorder, specifically. They said it would get better on its own. The acute vision loss indeed got better, but not entirely: I had vision problems until I was 22 and a doctor finally thought to check if I was near-sighted. Previous ophthalmologists had done standard vision tests, but always after dilating my eyes, and once my eyes were dilated no lenses could help me see past the pain of bright lights. I've always been very sensitive to light. With a glasses prescription, and an appropriate tint to help my light sensitivity, I have 20/20 vision - something I hadn't dreamed of for many years - but a lingering mistrust of doctors. I will always wonder if there was something going on beyond stress in 2002, because while I'll be the first to concede that I was an emotional mess, I am skeptical that my problems were "just stress."

In 2004, a psychiatrist I saw for an assessment referred me for an MRI. I'm still not sure why he found this necessary. I was having problems with dissociation, but it just seems odd to refer a patient with a normal clinical neurological exam for an MRI after a single appointment. His report listed MS as a condition to rule out, alongside a plethora of other diagnoses that very obviously didn't fit me. I don't know if he put that on his list when he ordered the MRI or after seeing the results, which showed "nonspecific" lesions in my right parietal and right inferior frontal white matter. A precautionary test earned me and my anxious mother a trip to the MS clinic at Sick Children's Hospital. Dr. Banwell, the neurologist there, was fabulous, as were her resident and staff. Unlike the ophthalmologists I'd seen a couple of years earlier, these doctors listened to me and respected that I was not a small child and that I wanted to be informed about my health and have a chance to give my input. After doing a usual neurology exam, and noting that everything was normal, they concluded that my nonspecific lesions were quite likely benign. It does admittedly puzzle me that a teenager with no history of head trauma could have random lesions chilling out on her brain, but I trust Dr. Banwell's judgement.

Fast forward to 2009. In the intervening years I'd had a few days here and there when I had trouble walking because my legs were too stiff for me to effectively move them. I assumed it was just stress - I am prone to anxiety, to say the least. In the spring of 2009 for a few days I was extremely tired for no discernible reason, and when I bent my neck it felt like electrical currents were running down my arm. The doctors at the university health clinic were concerned because my reflexes were too brisk and my coordination was off-kilter, and referred me to a neurologist. I was studying abroad at the time, though, and due to move back to Canada before the appointment came through. I got better on my own and more or less forgot about the incident until the fall, when the same thing happened again. This was while I was recovering from swine flu, however, and I attributed my problems to that. For a couple of months in the fall, I was extremely tired and weak, had stiff muscles (mostly in my right leg, lower back, and my diaphragm) that twitched without any obvious reason, and sometimes had the same electric current feeling when I moved my head. I emailed Dr. Banwell, who sent a referral to the MS clinic at St. Mike's hospital in Toronto, where I saw Dr. O'Connor a few weeks later.

Dr. O'Connor seemed very unconcerned by my symptoms, even though I kicked him accidentally when he tested my reflexes. He ordered an MRI as a precaution, as well as evoked potentials. At my final appointment with him in summer 2010, he cheerfully told me that my MRI was unchanged from the previous one and that I had nothing to worry about. So I cheerfully left the country, and since I was feeling better by that point, forgot all about it.

Fast forward to this spring - April of 2014. In the years since 2010, through my master's degree, a gap year, and the first year and a half of my PhD, I've rested with the assumption that everything is OK, and that I just have random lesions in my brain. That's a bit weird but if it's not causing symptoms, I can live with that. In the past four years, I've had the occasional day when I've been inexplicably tired or sore, but nothing that can't be caused by grad school or working out too hard. There was one weekend when my right leg completely seized up with painful cramps that didn't go away for several days and made it hard for me to walk. I've figured that was because I was carrying my shoulder bag in an awkward way. There was also a week when the same cramping happened in my left arm, but I figured it was a repetitive strain thing from taking notes for too long, and I've since blamed my arm cramps when they recur on a particular historian who writes lengthy monographs, one of which I read for my comprehensive exams.

During my comprehensive exams, though, the spasms and pain in my right shoulder and arm were terrible. I figured it was repetitive strain, after a week of spending more time typing than sleeping. Perhaps a pulled muscle. When the electric shocks started, I figured it could be a pinched nerve. When I saw the university health clinic doctor to get a massage referral, she found that my reflexes were very brisk and was concerned about my symptoms and referred me to a neurologist. "At least I know it's not MS," I told her, given that previous doctors had assured me that it's not.

A week ago, the referral finally came through - to the MS clinic. Do not see a regular neurologist, do not pass go - go straight to the MS clinic. Damn. I asked the university clinic receptionist for a copy of my reports from the previous MS clinic appointment, which Dr. O'Connor hadn't given me when I left his care in 2010 as he felt there was no need. He'd told me that the neuro exam was completely normal, but his report says that I have 4+ reflexes in my knees, which all the reading I've done says is almost always abnormal. He also says I don't have clonus, but apparently that's what distinguishes 4+ from 3+ reflexes. A few YouTube videos have made me really wonder about that, because the shaking in my right leg looks almost exactly like the clonus videos that people have posted. More worryingly, he had told me that there was no change from my previous MRI, but the radiology report from my 2010 MRI notes bright spots in the right deep occipital lobe. The 2004 MRI makes no mention of that. So, I'm terrified. Everything is non-specific, insufficient for a diagnosis. Hopefully this new neurologist will have answers.

I'm not sure what I'm afraid of more - a diagnosis that has an uncertain but never particularly great prognosis, or another verdict that my symptoms are too nonspecific for a diagnosis and being told to just live with it for a few more years until this same problem crops up again.

Ultimately, what I want most is specificity. Either it is MS, which would be devastating but at least specific, or it's something else - in which case, I want to know what else, so that I can make it go away, rather than ignoring it and spasming and cramping for god knows how much longer.