Not My Story

I’m surprised to be writing a post for this blog because I didn’t think I was sick enough.

Sure, that’s kind of elitist of me, but it’s just that my illness is ADD, the same cognitive divergence that makes me a great engineer despite being slow with numbers. So why not leave the space for the ones worse off? Why not take a step back?

Why not pretend that I’m just an ally, that I can go back to ‘normal’ after...

And yet, I’ve forgotten people’s severe allergies, and in my eagerness to share food, I poisoned my friend with a Brazilian peanut brittle.
It took me 18 years to finally memorize my mom’s birthday, and I still don’t know my dad’s.

If you know me in person, notice how I never use people’s names in conversation, because I’m always afraid to mess it up yet again.

Growing up (and in days like today) my writing is an indigestible combo of short sentences and run ons.

I just lost my keys along with a swiss army knife.

I’ve heard ADD defined as a lack of energy to put into focus. So I’ll let some things slip no matter how important. Anyhow, the forgetfulness is just a detail. What really gets me is when I have no energy to regulate emotion. Bitchwherewolf. Once a month I’m prone to outbursts, 3am cries and major rants. Still, I can write it off as minor inconvenience. I can pretend to be in the ‘normal’ side.

This high functioning cognitive Jenga tower of a brain landed me a co-op job at the CAMH, a huge organization in Toronto that has been trying to treat the mentally ill for more than a century.

Literally.
They started in 1850, as the Provincial Lunatic Asylum. Iffy name, I know. But any name would become a slur eventually. Even the building’s address was made an urban legend: moms would threaten to send kids to “999 Queen street” if they didn’t behave.

As did the government. Anyone ‘undesirable’ in the prisons would be sent there for life.

The organization changed the address to 1001 Queen, like a country changes currency in hopes of ending a recession. I wonder if it worked, or if stigma is happy to follow the fresh names.

The place is huge, and beautiful, and even the old building I worked in was quite nice. I heard later that the confusing corridors were designed to contain escaping patients. Well, at least the new buildings were meant to be more open.

...Except for an inconvenient wall that covered half of the grounds. One day i read its little plaque. The wall was built by patients when the wards used their forced labour. Originally, the centre prescribed light manual work as a healing task that forms community and gives people something to be proud of. Over time though, (as the government stuffed the place full without increasing its funding), “light” was no longer an adequate adjective, as patients did all the laundering, cooking, cleaning, and (you know it!) construction.

Many saw the bricks as the only easels that could not be confiscated, so the wall still echoes their graffiti names and gibberish and pleas. One brick hauntingly reads ‘born to be murdered’. Nowadays, it is full of recent scribbles by kids and lovers and even a youtuber promoting herself. The hard history accompanied by the lighter mundanity of our world.

Like the mundanity of crossing through the gap in the wall every work day, maybe under the same spot of fence where Leonard G. and Marlene jumped and escaped. Maybe this garden where I’m gobbling up lunch is where Winston Woh built a violin out of a wooden box, and that street is where he drove around in his makeshift car!

Maybe in my office is where Marlene was brought when re-captured in 1910. In the washroom I hear her: “after years of being locked up, I am near out of my mind and am ready for this asylum”.

I hope this isn’t where she took her life.

Geoffrey Reaume looked through countless patient files (all in the perspective of caregivers) to try and piece together some of their perspectives.If these walls could talk is a great documentary on it.

I was stopped one day, almost at work, by an outpatient. He approached me on the bus, making the twitchy motions of someone whose motor functions are bruised either by severe illness, or equally severe medication. He said I seemed nice, but that I should be careful, keep my eyes peeled, that the homeless folks always in front of the building were better off that the ones inside. He points to the shiny new subsidised housing unit, where patients too early in their recovery are encouraged to slowly build up responsibility and independence. Everyone in there seems pretty proud of their progress, but I nod, thank him, and get going.  

I walk across the darned wall, aware now of it’s weight. but all there is on the other side is a nice garden. I say hi to my co-workers, all women, with few exceptions like the one physicist doing data management, who “wanted to do nuclear science, but they see a tan Iranian guy applying and push me to signal processing instead”. He comes in the office to talk to a clinician scientist friend, a chubby pale Israeli, always wears the kippot and a warm smile.

I tell my supervisor that her new hijab is gorgeous, she smiles and asks me about the database I’m building. She wants it to be flexible, since the center is always trying new treatments, as well as secure. They do NOT joke around with patient data. She scrutinizes the consent process: not robust enough. Real science has willing participants, and that means being open to their feelings and feedback at all times. She encourages me to keep going and leaves to check in with her other co-op, a funny Filipino guy. She offers him coffee and he kindly reminds her that he is Mormon.

I swear, this place is a friggin poster for workplace diversity.

I type. Making a database so the center can be faster, so it can treat more patients, so it c-

“Code White, Unit 4, 1st floor,” the speakers announce.

My supervisor zooms out to go help. Code white means a patient is disoriented. Probably another ECT case. My center handles the court-mandated cases of ElectroConvulsive Therapy. One day I ask my supervisor about it. Her dark fingers entwine: concerned. She speaks carefully.

It is the last resort, the patients get anesthesia before the convulsions, the dosage is as small as possible, and it is only done until the suicidal intent is manageable enough that other treatments work. Memory loss is now rare and minimal. She can’t say real names, but mentions Linda, who refused to say that ECT helped, but whose family could finally visit. She describes alternative treatments this center is trying to approve, and all the failures she sees in the mental health sector, and resonates my frustration at stigma and lack of funding. I take a flyer from her desk: “ECT saved my life”. God I hope this isn’t propaganda.

When Ji Youn had her second wave of suicide attempts I was hopelessly far from Van. The irony: we could treat her if she were in Toronto. I unzip this mess to my supervisor. She is warm and understanding; recommends DBT. My aunt is visiting but I spend the night calling any and all centers that run DBT treatment in Van. Days later, Ji is in a waiting list.

These people are genuinely trying to help.

And in most cases, succeeding.

I made a friend, Krysta from HR, who invited me to march at Pride representing CAMH!

Marching with us was Ben, whose job is to unwind the tension between doctors and patients, especially those who have been strapped down, like he had been a decade ago. Sometimes things just get too dangerous, but a treatment shouldn’t be the cause for another trauma.

They treated him for being gay as well as the hallucinating. Turns out, only one of those got better, which explains the parade turnout: 7 people out of 3000 staff. CAMH and the DMV are done attacking Queers, but too scared to make amends. Ben loves his job, his experience is invaluable in making patients trust again and doctors listen for once, but “there is only one of me, for too many of us”.

Krysta from HR called me crying when she couldn’t get a spot at the counseling services for employees.

“Too many of us.”

I like to think of how we used to treat headaches by bleeding patients. Medicine took time and mistakes. It’s just that mental health is still taking its goddamn sweet ass time, and sure having its fill of mistakes.
 

But hey, I want to be a part of what gets us there, and patients are a crucial part of this journey. (Some might even say they are the whole point this was a journey in the first place).

So maybe I can finally admit that I am one of the “us”.

Maybe I can stand in the historically awkward space in between, where the wall once was.

Maybe we are brave enough to cross it; let a patient be their own healer, tell your doctor that she’s showing progress.

I am shaking.

Can we cross together?