On Talking to Chronically Ill Friends by Sophie Strand

Things to Say Instead of “I Hope You’re Feeling Better” or “But You Look so Good!” by Sophie Strand

On Talking to Chronically Ill Friends

Read on Substack

Making Kin with Disability by Sophie Strand

...most ecosystems these days share more kinship with disabled bodies given that they have been changed and interrupted by pollution and anthropogenic development. I have been offering more and more as someone with incurable genetic illness and PTSD, that it is to the neurodivergent, the chronically ill, the disabled, the terminally ill, the survivors who we must turn for information on how to come into relationship with beings and landscapes that are intimate with harm and impairment. 

Check out Making Kin with Disability by Sophie Strand.

Mad studies.

I had a busy weekend. On Saturday I trekked out to Victoriaville to visit a handful of antique places with K. I was introduced to K in Victoria when I visited my buddy there. K is in Montreal now, working on a master's degree in interdisciplinary studies, specifically disability studies.

Our day together had us discuss all sorts of things, much of it around disability studies, academia, access, mental illness, graduate work and just everything in and around those subjects.

When I talked to her about my Etsy shop, as well as my blog here, and what I focus on she was very encouraging as to my work being elaborated into graduate work.

She also pointed to an upcoming symposium on feminism and dark humor, as well as the field of "mad studies." Both things seemed so me. 

I'm going through a few "mad studies" links now:

This is a resource site. It seems to be based in Lancaster but many of the links are Canadian. It seems to have started in Canada.

It's linked me to the Centre for the study of Gender, Social Inequities and Mental Health in Vancouver, which sounds right up my alley.

From The Guardian UK, Mad studies brings a voice of sanity to psychiatry by Peter Beresford:

The approach embodied in mad studies offers us a coherent roadmap for rethinking our mental wellbeing by recognising people who have experience of mental distress as both service users and experts.

I'm surprised that with all the reading I've been doing I've not been linked to Ryerson or "mad studies" before today. The symposium was in 2012. Though in all fairness to me in 2012 I was too busy having panic attacks to be reading anything other than Ativan labels.

 From another article, The rise of Mad Studies: A new academic discipline challenges our ideas of what it means to be “sane” by Alex Gillis:

"Mad studies doesn’t reject medical models of madness [but it puts] them into a historical trajectory, one that shows that psychiatry isn’t an absolute interpretation of human mental states,” says Kathryn Church, an associate professor of sociology and director of Ryerson’s school of disability studies.

It contextualizes "madness" - and I hope the representation of actual "mad" voices and experience fill the gaps (and there are many) of the nuances of access, care, and experience. Like any history account, the majority of reading someone's history means negating the histories of others. Views are never fully three-dimensional. Much of our talk about mental health is extremely superficial.

The article ends with a call to represent yourself and your experience, and that's where I'm wading right now.

How best to represent myself and my experiences?

Is academia more limiting than it is a helpful framework?

Do I want limits to how I represent myself and my struggles?

Am I comfortable with a language-based approach?

Does my writing and creative work need to be shared, viewed, and recognized to be valuable?

Am I willing to make such a financial sacrifice, for a degree with no monetary return value?

Am I willing to continue living like a student / someone who is perpetually broke?

Can I afford graduate school?

Do I have the energy for it?

All things I'm thinking of. All of this, and more, of course.

Feminist Queer Crip by Alison Kafer.

When I woke-up with Bell's Palsy at the end of March, I was reading Feminist Queer Crip by Alison Kafer. I didn't read for a while, since I was exhausted and my right-eye wasn't really working, but I put it aside because I wanted to make sure I wrote about it here.

It had been recommended by a friend who had read it as part of her research around ability / disability studies. She's currently working on her Master's here at Concordia. 

She mentioned the notion of "crip time" which to me kind of correlates to spoon theory, in it's approach to creating a new way of understanding the way the context of ones abilities and limitations have a direct link to their own starting point / way of being in the world. 

Kafer's book has a lot of great sections in it, but overall it turned pretty heavily academic mid-point for me, so it lost me a bit. Though it reminded me of my time in Women's Studies, it also reminded me of how alienating academic writing can be. 

The book is a great place to start if you're interested in critical disability studies. Her early sections discuss the notion of disability as a "forging" of a group identity, but also how the ways in which race, class, gender, sexuality, and location being omitted in representation create a "white disability studies" reality, one which has been more visibly present and re-centred, as is the case with all whiteness. Her positioning herself as in a queer framework means troubling these ingrained systems of power. 

She also mentions that "disability" itself-though a term that can be used to gather around-and how those that identify with or as "disabled" can seek out that community. An issue she brings up is how "moving away from a medical/individual model of disability means that disability identification can't be solely linked to diagnosis" (page 13), something that's close to me since I've had so much trouble navigating the medical system and the mental health establishment. 

Kafer's work around "crip time" is something I found very helpful, from page 37:

Thinking about diagnosis and undiagnosis as strange temporalities open the door to still other framings of crop time, of illness and disability in and through time. What would constitute a temporality of mania, or depression, or anxiety? If we think of queer time as involving archives of rage and shame, then why not also panic attacks or fatigue? How does depression slow down time, making moments drag for days, or how do panic attacks cause linear time to unravel, making time seem simultaneously to speed up and slam shut, leaving one behind?

My memory, my use of time, the way I conceptualize time,  has been and continues to be a major issue for me in navigating my life, and in lately, worrying about work and taking care of myself. 

Kafer ends her chapter on time (page 46) saying:

Disabled people- particularly those with developmental and psychiatric impairments, those who are poor, gender-deviant, and/or people of color, those who need atypical forms of assistance to survive-have faces sterilization, segregation, and institutionalization; denial of equitable education, health care and social services; violence and abuse; and the withholding of the rights of citizenship. Too many of these practices continue, and each of them has greatly limited, and often literally shortened, the future of disabled people. It is my loss, our loss,  not to cake care of, embrace and desire all of us. We must begin to anticipate presents and to imagine futures that include all of us. We must explore disability in time.

Kafer's book is thick with examples of not only discrimination but the erasure of disabled bodies. There are examples of lived lives that would be very difficult for me to summarize here, so I recommend you read the book. 

Kafer discusses individualism, and how its often used as a way of depoliticizing disability, and more so removing societal responsibilities (page 89):

Disability appears as an individual physical problem that can be best overcome (and should be overcome) through strength of character and adherence to an established set of community values ... This focus on personal responsibility precludes any discussion of social, political, or collective responsibility.

We really are on our own. Especially in cases where disability is not physically identifiable. If a chronic disease is a mental illness, or is one that takes a lot of research and a lot of "negative diagnosis" it can be a tremendous amount of emotional, logistical and mental work to attempt to help yourself. 

The book is a staple of disability studies for a reason. If this area of study, or you know, reality interests you, check it out. 

Feminist Queer Crip, by Alison Kafer.

Hells bells (palsy).

Well, what the fuck. If this my life?

I woke up yesterday with a numb mouth. I thought I slept on my face weird, and went back to bed. When I woke up I had lost all control of the right side of my face. If I try and sip water, it falls out of the right side of my mouth. I tried to eat toast and couldn't properly bite into it, or taste it. My right eye doesn't close. And when I smile, only half of my face moves.

I called Info Santé (which is a free health-care question line, answered by registered nurses) and the nurse asked me some questions and had me test some other muscle functioning. I could grip my hands, and the paralysis seemed to only be of the face, but the nurse recommended I go to the closest emergency room.

Initially, I was worried about a stroke, I was worried about being permanently "disfigured," I was worried about not being able to drink coffee in coffee shops, bite into a tomato sandwich or you know, smile ever again. I have this lopsided smile that seems sarcastic and shitty at best.

So we headed to the ER, where I went through triage and was coded as a Priority 3. I ended up getting in there at about 4:00 pm, I saw a nurse, did some muscle tests,  an EKG and a blood pressure test. Turns out, I didn't have to take a blood test because 24 hours earlier (more on that later) I had been to my local CLSC (a community-based health centre) for another medical test, so they happened to have those blood samples on-site. I was given a bracelet and a wait number. After that, it was a long wait. I was re-evaluated once, to see if my stats changed, and then continued to wait.

I saw a doctor around midnight. She did further tests. She said it seemed to be Bell's palsy. She said in most cases it resolves itself within a month or two. It can go away in as little as a week. She also said it can be permanent (like with Jean Chretien) and there can be long-lasting after affects, that maybe only I would notice. And so I left there around 1 in the morning shaken and exhausted.

Today, I've been resting and just kind of a mess. I've texted some friends, since yesterday the only people who knew I was in the ER were my mother, brother and my friend S. I texted her then called her once I was through the triage process. Her mother is actually partially paralysed due to a malpractice at her birth (the woman birthing her wanted to wait for the doctor so she "pushed her back in" and broke her fucking neck).

I explained what was going on with my face, and said it was great to have this happen right before my work review - which is this week. I'll be eye-patched and slurring, so here's to hoping that plays in my favour for getting a fucking living wage.

I don't look forward to going to work on Monday. I'll need to wear my eye patch and explain to my boss and co-workers what's going on. What a shit show.

Not even two months ago it was vertigo! Now it's fucking Bell's palsy! What the goddamn fuck! Before that it was my mom's global amnesia! All of this in the last 4 months!

Is this what happens once you hit your 30's?

The last time I went to see Dr. Rishi, I mentioned this bump I have at the top of my shoulders at the base of my neck. It's known as a buffalo hump. He said it's in line with something called Cushing's syndrome, which I then looked up, and for which I have 90% of the symptoms. It's eery. Down to the big'ol moon face.

So, he had given me a prescription to go for a blood test, and do a 24-hour urine cortisol test. So, Thursday of this week I got up earlier and went in for the blood test and got the giant pee-pee jug. No joke. Giant.

So, before I could even complete those tests I got Bell's. The thing is, Cushing's deals with cortisol levels, and the test I was suppose to do does as well. So I guess I have to wait to be off the cortisol to then test my cortisol levels.

I left a message with Dr. Rishi, it's easter weekend, so he'll be back in on Tuesday. I said I had been in the ER and that I was diagnosed with Bell's palsy, and that I had questions about my urine test and stuff. Hopefully he'll call me quick on Tuesday.

I would hate for the cortisol derivative I'm taking to fuck with me even more if I do in fact have Cushing's.

Part of me was hopeful the urine/cortisol testing would bring back the Cushing's diagnosis so I can at least feel justified in my having lived with, and experienced these symptoms for real. At least I'd have an answer. Maybe I could look into treatment.

Well, there's a reason I haven't written much about it or mentioned it to most of my friends, I'm afraid of being too hopeful. I don't want to set myself up for disappointment.

All of this has been side-tracked of course, by my facial paralysis.

I face-timed with my brother, which was a great distraction.

Happily I got more supportive messages from my friends.

A couple of friends in particular were kind of on-the-nose about how I was feeling. Really in the "what the fuck" "are you fucking for real" vein. I guess having them reflect that back to me was nice, like, it's not just me, it's been a rough 4 months.

Feeling vindicated in how you feel is a comfort.

I'm lucky, I have some good friends.

It's taken me most of the day to just work around to sitting down and writing. Yesterday was rough. Today I have good moments and bad moments. I'm mainly with my mother, and she was with me since the hospital so there's no discovery of it for her. But going out, and not being able to smile at people, and being impaired in my speech is hard. 

It's still early days, so those around me are pushing that it's likely temporary. I hope it is. When I think about never being able to smile again, it's a lot. 

One day at a fucking time. 

Hey I just met you, and I might be crazy, but here's my e-mail, so solve my problems maybe.

Hey B,

I hope you don't mind, I lifted your e-mail address from C's visit announcement.

It was mentioned in passing during conversation that your master's research is in the disability spectrum (I'm not sure in what regard).

I was wondering if you'd be willing to send me anything you come across dealing more specifically with mental illness and depression. I'm trying to work through some of my own stuff on my blog, and sometimes pieces about mental health, about self-care or depression or suicide allow me to focus what I think and feel a bit more.

I mean, a lot of things interest me . . . . feminist issues as a whole - which is basically everything. But my main point of view comes from someone who is chronically depressed and struggles daily.

I was also wondering if you have any orgs you can refer me to. . . If you come across them. I know disability is a huge umbrella term . . . . But maybe you know of stuff - local and otherwise - that could be helpful. . .


Lately, for me, my depression has been rough, and right now I'm really struggling with understanding it as a disability (and not a demon I deserve) . . . I'm also struggling with working full-time, so I wonder what my rights are . .

What a shit-show!

Anyway, I hope you're well. Sorry to be such an intense bummer.

I'm not having a good day today, and when that happens I try and reach out - no doubt a symptom of my desperation.

I have limp spoons today. They're plastic and have been left in a hot car. They're despondent.

♥

K.