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.

Another year

Best way to deal with an anniversary, it seems, is distraction. My comprehensive exams have kept me so busy that while I have been having a hard time, I have had no choice but hold on and cope. Last year I also was busy writing at this time of year, and while I was initially worries about not getting to take some time for myself, it helped to be engaged in something completely different. I can't say I'd choose to do something quite this intense every April, especially since both the papers I handed in today dealt with violence in some way. But it was good to situate things as abstractions, keep myself focused on an academic plane all day. Because of the comps people are being extra nice to me, and that also helps.

I've had lots of thoughts recently that have yet to meld together into a coherent blog piece; both the content and the process of my exams has been very thought-provoking. That's a matter for another day, though.

Silence

Each year, the 16th is the hardest day. It is so, so arbitrary; the calendar is a social construction, not and there is nothing inherent about this day. And yet, things feel harder. Partly, it's a function of the date being a mnemonic, as I've discussed before. But partly, it is the silence. 

For so many other life-altering events, people are attentive to anniversaries. A year since an accident, or ten years since the death of a loved one, if others know the significance of the date, is likely to bring kind words, even cards and flowers. 

I have little use for cards, and there isn't one for this occasion (happy birthday to your PTSD?). Flowers are potentially poisonous for my cat. What is hard is that even though several of my friends and family know why this date is so difficult for me, I can count the times when anybody has extended any sort of particular support. They probably lack the words, or are afraid to bring it up in case I am not thinking about it (understandable but not the case; odds are that given the contours of my analytical brain that reads so much significance into dates, places, and other arbitrary indicators of experience, the history of this date is likely not for from my mind, and it already emerges in my mind each time I read the date on a newspaper or computer screen). It's not that people don't care, but that there is no social framework for this. The silence, each year, is deafening. 

A letter

A year ago, in the last session of the mindfulness group I attended through Health and Counselling at my university, the facilitator asked each of us to write a letter to ourselves. He then mailed them, a few months later. I didn't open mine right away; in the usual paper-shuffle of grad school, it fell behind the printer.

Today, on a hunt for scrap paper, I found a little brown envelope, addressed, in my own purple-gel-pen handwriting, to me. It was the best thing I could have read, and I wish I'd found it earlier in the week. It refers to comps, which I am presently writing - I'd optimistically planned to complete comps in the fall, when this letter was initially mailed. The sentiment here may be a bit trite, but today, it's exactly what I needed.

"Wednesday, April 10, 2013

Hello, Me!

There is no deadline for healing, no time after which it must be OK. That is OK. Everything comes with time, patience, and self-love. Pain hurts, but it can be safe if I let myself remember love. Things are what they are.
I need to share with myself the love I have for others; focus on the present, however it feels, and let go of the fear of the future that is not yet here, the fear of the past that cannot come back. Time cannot own me. 
As an historian, fearing and hating the past closes so many opportunities to accept it for what it was. Wishing for what could have been, obsessing over how it could have hurt less, is ahistorical. There are some analyses that ought not be made. Some things will always hurt, but they have less power if I look myself in the eye and let go, surf the emotions, then put them away.
When this letter arrives, comps will be looming. I have survived bigger trials, and will make it through this one, too. Self-care is critical, whatever pressures other people place, whatever the time constraints are. With silence, stillness, and stretching, there will be pieces of peace.

Me"


Now, I am tempted to write myself nice letters when I'm having a good day, and hide them behind the printer. Or the sofa, whatever.

Anxiety, Academics, and Acrostic Poetry

Complex
Overthinking
Marathon of
Practically no
Sleep.

That's how I began today's reflection on my other blog.

My other blog, where I am writing this week about my comprehensive exams, is a semi-anonymous-but-not-really blog associated with my academic work, so I haven't been absolutely candid about mental illness - although it is an undercurrent, and probably fairly apparent in my writing as I talk about anxiety. I do have an anxiety disorder, among other diagnoses. Nothing like a mountain of high-stakes work to draw it out of me in its least rational manifestations.

My terror surrounding this exams has many overlapping elements. Fear of failure, of course, as I never feel like the quality of my academic work is adequate. But in addition, there is the fear of what will happen to me emotionally if I fail, or if I panic too intensely before I'm done, and thus bring about my own failure due to inability to emotionally cope. It is hard for me to separate what must be a normal extent of anxiety for these exams from anxiety stemming from being someone who struggles with anxiety on a more pervasive level. I've heard the horror stories: one person whose description of her oral exam uses similar language to what I would use when describing the odd sort of dissociation I felt while being raped; another who was hospitalized for dehydration after his comps. There isn't space in academic relationships to ask other people whether (or how) mental health has influenced their comps, and how comps has influenced their mental health.

When scheduling the exams and realizing that one of them would be on a date that I still find difficult, I was afraid that I would be preoccupied with thoughts of trauma while writing. I'm not. I'm preoccupied with a sense that the questions are purposefully designed to showcase my weaknesses, that my failure is a foregone conclusion. My academic fears are overtaking my triggers and trauma in their race for my attention - and perhaps that's a good thing, although it doesn't exactly feel that way.

Exam anxiety is something I've struggled with before. At 18, I was unable to write midterm exams after having a breakdown while studying and being unable to find my way home when I went for a walk in my neighbourhood. Then I spiraled downward, terrified that I could be having a psychotic break (I wasn't) with my fear of my own mental health overtaking my fear of grade twelve chemistry. The high school found other ways to evaluate me, and I am grateful that they accommodated my needs as I otherwise would not have passed my midterms, with attendant academic consequences. The trouble with comps is that there simply is no other way, in practice, at least. Theoretically, another system is absolutely possible - comps procedures less focused on stamina and more on intellectual ability are in place in other departments. Our handbook technically says that questions must be given to students "at least" one week in advance, but most professors interpret that as "no more than" one week in advance. The only reason this is done in such a short time frame, as far as I can gather, is tradition, and perhaps as a mechanism of weeding out students who are not prepared. The trouble, for me, is that I'm academically extremely prepared - but emotionally, I don't know if I ever will be. My friends and committee have assured me that I'm ready. I have thousands of notes as a tactile reminder of this. If I fail, it will be because of my mental health more likely than my academic ability - and that would be a tough thing to stomach.

I'm rambling now. Longer post to follow, I think, about how this system works with and against mental illness. Something more engaged, less navel-gazing, once comps are done. For now, I'm going to read some poetry and then go to bed early and hope that self-care doesn't count against me in the long term. Tomorrow I'll probably work on campus to be around people who are also working (but hopefully less distracting than a litter of two-week-old kittens). These people tell me it's all going to be OK. I'll only be able to believe them once it is over.

Wasteland

Each spring, I come back, pulled somehow, to TS Eliot.
This week, I've written my own somewhat convoluted addition to "The Waste Land." Original parts in italics.

April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain. 
Winter kept us weak, covering
Earth in forgetful snow, feeding
A little life with dried tubers. 

In with a bang, fooling
Nostrils, teasing taste buds, drooling
On shrink-wrapped forsythia, catching
Hollow rabbits by the seams.
Scriptures boast from church signs, resurrecting
Blue-masked fears, in triage, infecting
Screaming lungs, stifled exhalations, linking
Burning bushes, bricks and mortar, duck ponds
Dredged, unblinking.

On March 32nd

Dates. At this time of year, despite PTSD being a waning factor in my health (anger and grief are overtaking flashbacks when I do have bad days), I struggle with two things: weather, and dates. The weather is a more sensory trigger, a subtle reminder that it's that time of year again. Those beautiful signs of spring - forsythia blooms, robins, early buds - saying that time is passing, that I'm still feeling this way. It's a taunting, haunting start to the cycle, which I'm trying to reframe as a sign of strength, that I've gone through another year and damn it, I can do more.

But dates. This one has been more troublesome for me to piece together. The calendar is a social and cultural construction; on a lunar calendar, I could ascribe meaning to a different date. Days of the week are arbitrary, yet it means so much more to me that this year, once again, it is a Wednesday. I realized, though, today, that this isn't really a standard "trigger." It's more of a shorthand, a mnemonic. A phrase I hear more and more at this time of year, that places trauma in my brain even when I haven't been thinking about it.

Say your birthday is on March 10th (arbitrarily chosen). If someone says "let's schedule the meeting for March 10th" you probably think, at least fleetingly, "oh, on my birthday." We all have those dates that prompt a thought of something else, a "remember when" on-this-day sort of thought. It's hard, though, when that thought is a reminder of the worst day of my life. This year is hard in particular because I have a major deadline that day. The innocuous emails sting: "the second paper will be due on..." means more than the sender can ever know.

Sometimes I can go for days without ever thinking about it. A string of good days to hold on to, that are so natural that I don't even realize that they're good days until I've run out of beads to string. April makes that impossible. I'll be dodging reminders until March 47th.

Protests and free speech on campus.

I've been thinking today about the Silent No More protest that happened on campus. For those unfamiliar with it, it is a pro-life event where people who regret their abortions share their stories. I am and will always be pro-choice, but I am not opposed to these people sharing their feelings. What bothers me is the way in which it was done - they held their event in a major outdoor space on campus, through which students must pass to travel between regularly used buildings, and they told their stories using megaphones, so that those in the vicinity had no choice but to listen. This is just a step down from last year's Genocide Awareness Project, which displayed photos of aborted fetuses alongside photos of genocide victims, trying to build a parallel between the two. On the days they were on campus, I walked with trepidation through Convocation Mall where the display was held, and removed my glasses so as not to see it, because images of violence upset me on a good day, and trigger me on a bad day. This year, I was able to avoid the area entirely.

It is unsurprising that students have called for banning this event, only to be met by other students, some of whom are pro-choice as well, insisting that free speech means it should be allowed to take place on campus. I vehemently disagree. As they are currently conceived, Silent No More and the Genocide Awareness Project overstep a boundary; there are ways to talk about controversial issues without this extent of pain. Indeed, Silent No More likely alienates some of the very students it aims to reach.

For a parallel, in November Out on Campus hosted an event for Trans Day of Remembrance, to recognize violence and recognize trans people who have been murdered. In consideration for fellow students who might not be in an emotional space to hear about violence, we placed signs at each end of the memorial display to let students know that it would be something difficult. There were absolutely no graphic images - we shared pictures of people when they were living, as much as we could - and no loud speakers, nothing that would prevent a student from walking by without engaging with the display. And a safe space was provided with resources for people who found it troubling. 

Of course, transphobic violence and abortion are not equivalents, but this is the closest example I could think of for something that was well-executed on campus and pertained to a troubling issue. Any event has some potential to be triggering; if someone were triggered by or afraid of dogs, for instance, the "Puppy Therapy" events preceding exams could be difficult. However, they are meant to calm students, not to stress them out. The dogs are contained in a circle of responsible humans, carefully trained, and well controlled, and one can easily look the other direction. By using sound, these anti-abortion events create a barrier that students cannot get around, and that is not fair.

What if rape survivors shared our stories through megaphones, detail after detail, in protest? Shared photos of the aftermath, puffy eyes with a haunting stillness, shredded body parts, caked blood under fingernails, pink spit from so many tears? Free speech says this is our right, too, like that of the women who regret their abortions. It is their right to speak, but it is mine not to be forced to listen, to hear stories that share experience of such violence, pain, fear, and sorrow when I have my own to shoulder. We have students who have survived many forms of trauma, and it is cruel to protest violence--and I don't doubt that many of the the Silent No More speakers experienced their abortions as violent--with further violence. 

Another student likened this amplification of their protest to finding loud music triggering - should we ban that as well? Perhaps it was meant to be a straw man argument, but indeed I feel that blasting music on campus is inappropriate. Yes, we should restrict events from playing music that distracts students who are hard at work, and also brings about more visceral responses from those in our community who have experienced violence. When the beat shakes you as you sit in the library, the soundtrack of an event outside echoing that of a painful day, or the jarring bass in syncopation with your heartbeat as it races, this is not conducive to education. There is a threshold where decibels feel violent to those already in pain. We need not be wrapped in quilts in padded rooms, but for students who have survived trauma, coming to campus can be difficult enough. Congenial and educational initiatives, rather than alienating protests, would spare us so much grief.