Life with chronic illness

I don't want to write this post, but I'm going to anyway, because yesterday led to me completely losing my shit at a medical appointment. I left uncontrollably sobbing, shaking...and not even from the extremely painful medical test I had, but from how much lack of compassion and actual caring there was around providing me the recommended treatment. 

I've been keeping most of my medical traumas private for a while now (aside from what I put in issue 2 of my zine), after being shamed and judged by several people for talking about my health related experiences. But I'm working on overcoming the feeling that I need to keep quiet about these experiences, because I feel it's an important part of demystifying chronic illness and advocating for better understanding and care, for me and others who are sick or disabled. I don't want to let the judgment and shaming of a few people silence me, so I have to keep telling my story.

Mini Iris

It's been a really bizarre few months here, not just because of the freakishly early spring we're experiencing in Vancouver, while the rest of the country is under a snowbank. They've kind of passed in a blur. The family emergency in December and January was really stressful and made me brutally sick, but I'm finally starting to get back to closer to whatever passes for stable these days. It also led to me reconnecting with some family members I hadn't been in touch with in a long time, including one of my parents. Some positive things have come out of it all, but it's been kind of up and down and overwhelming. It's a lot to get used to right now, and I don't really want to get ahead of myself because it's too easy to assume things will keep going in one direction or another, when it's all totally unpredictable. My feelings about so much of it are totally all over the place and far from clear...and I don't even really care to work them out at the moment.

I haven't had a lot of time or energy to give to the whole thing, as I've had to yet again completely shelve everything aside from the bare necessities so I could focus on trying to get back on my feet again. I'm behind on so many things - but they have to wait. Emails being put off, my supposedly monthly newsletter that I've had a ton of signups for but haven't sent out since before the holidays, sewing projects that have been sitting in a pile untouched, the web project/business Bruno and I have been talking about and wanting to develop, even less-essential health appointments... I'm pacing myself heavily, and they all have to wait - maybe for a long time to come.

This post is part 3 in a 3-part series on my quest for a calmer mind. Part 1 on social media is here, and part 2 on healing and boundaries is here.

droplets on lily leaves

Before I dive into the next part of my quest for a calmer mind series, two other things to report from November. First, an update on how the month-long social media fast went! In short, it was glorious. It was far, far easier than the first time I did this back in the spring, but it also felt a lot more positive all around. The impact of the fast was more significant, I had hardly any withdrawal pangs (especially compared to the fast I did in the spring), and I found I adapted easily to not having it in my life.

Bruno decided to join me, and it led to a pretty interesting month for both of us - we both did a bit more reading than usual, worked on our personal projects more, and spent more "quality time" together, just hanging out, cooking, and yes...I'll admit we may have watched a little extra Netflix. I certainly lost my compulsion to pick up and check my phone all the time, and it didn't actually lead to much sense of increased social isolation. Between the increased connection with Bruno, and actually spending more time either writing (mostly via email or text message) back and forth with friends, and occasionally socializing in person, I actually felt very connected. Though the number of people I interacted with may have dropped, the actual quality of the interactions was stronger.

Finally, a quick note on one of the things Bruno and I did during the last month. He built me a virtual bookshelf here on my site, and I filled it with my favourite books on life, health, and creativity! I'll be adding more as I come across books that I fall in love with and want to recommend, but if you're looking for something to read, go have a look!

This post is Part 2 in a 3-part series on my quest for a calmer mind. Part 1 on social media is here, and part 3 on meditation and mindfulness is here.

Before I get to the topic of today, I'm happy to report the first half of my Facebook and Twitter fast has gone well! I've certainly had a few little pangs of withdrawal, but overall, it's been having the desired effect: fewer racing thoughts, less compulsive social media checking, less time lost to the scrolly-scroll.

bee in purple flowers

What have I been doing with my extra time? I've been spending it on writing, reading, catching up on backing up photos from the summer, drawing, mending clothes and sewing, and of course, there may have been some Netflix watching too. (I broke down and started watching Gilmore Girls last week - uh oh!) And of course, hanging out with my sweetie!

I've also been feeling generally awful since mid-summer, and have been having a very hard time healthwise lately, so all that stuff that sounds like "doing" is really very much in the slow lane and making up a small part of my days. I've been mostly resting and trying to listen to what my body needs right now, as well as continuing to work through medical appointments and research, and following up on referrals and tests I need to schedule, etc. Life in the sick lane.

Update: despite multiple tweets and emailing Shane/CBC directly, I never got a response.

Apparently my post about the accessibility of "car-free" and transit for people with chronic illness has now become part one of a series of posts on chronic illness and urban life. I caught something interesting on the CBC the other day. Shane Foxman did a small segment covering a protest held by the Raging Grannies calling for public washrooms in the transit system. You can watch the short video segment here. At the end, he asked for feedback, so here it is.

Public Theater
Photo by Susan Sermoneta

Dear Shane,

The thing that struck me most about the segment was how you seemed to think this issue was funny, or not so much funny, but a bit of a joke. Several of the people interviewed on the issue brushed it off, saying "just hold it" or "be more prepared" or some variation of that response. That indifference was the main sentiment of the bit was baffling, and something I could only chalk up to either complete ignorance, or less offensively, lazy reporting.

Fact of the matter is that the lack of public washrooms in Vancouver, and specifically in the transit hubs and skytrain stations, is an enormous barriers to a large variety of people. The elderly, people with bowel and bladder problems, and of course children, all have varying abilities to "just hold it". It's not a joke, it's not funny - it has a severe impact on peoples' lives.

The Punk Singer - documentary cover imageHave you seen the documentary "The Punk Singer" yet?? It's on Netflix right now, and I loved it. A lot.

Some of you, particularly music lovers, will know who Kathleen Hanna is - she was lead singer of Bikini Kill and Le Tigre, and currently fronts (The) Julie Ruin. She was also one of the founders of the Riot Grrrl movement, which teenaged me growing up in Saskatchewan miraculously had some tiny window into, thanks to lots of MuchMusic, Sassy, and zines.

I was familiar enough with a lot of the bands and history covered in this documentary, but I also learned so much more about everything and how it all ties together. I was enthralled watching through the first two thirds of the movie that detailed the movement and music history, and Kathleen's role in it.

But then the film takes a major turn - one I had no idea was coming, when it reveals that Kathleen Hanna has been struggling for several years with severe chronic illness, eventually to be diagnosed with chronic Lyme disease. She speaks so candidly about how the illness has changed her life - it was actually hard for me to watch parts of it, because I related all too much... I found myself tearing up as she said many things that I've been feeling, and that despite my best efforts, I've continued to habitually minimize and hide behind a brave face.

A funny thing happened yesterday. After I wrote the post about how much I was struggling with answering the call, I posted it to a Facebook group of people who've come together around an online workshop we all took recently - Lisa Congdon's "Become a Working Artist". The first person to respond recommended I read The Artist's Way - the proverbial bible of how to be an artist, as they had been working through it and finding it useful.

Funny thing is I've owned a copy for at least a few years, and though I think I've cracked it open a couple times, I never made it past the intro. Alas, I've often found that when the time is right, the book finally resonates, so I went and pulled it off of my shelf upstairs. Then I sat down, and pressed on through the preamble, and both Introductions (I have the 10th Anniversary edition, so there's an intro before the intro) in full. All the way into the first chapter. 

What do you know - the time was right. From page 5:

Working with this process, I see a certain amount of defiance and giddiness in the first few weeks. This entry stage is followed closely by explosive anger in the course's midsection. The anger is followed by grief, then alternating waves of resistance and hope...

This choppy growth phase is followed by a strong urge to abandon the process and return to life as we know it.

"He who would be what he ought to be must stop being what he is." - Meister Eckhart

I unabashedly love Liz Gilbert. She just did a two part interview with Oprah on Super Soul Sunday, and the first part aired last weekend and is now online for all to see. I highly recommend you watch it. (The second part is coming up this weekend.) This first half is focused around the topic of figuring out what your "quest" in life is, why you're here and how to make it happen.

This part really resonated with me:

Oprah:
Isn't it true though, I knew this for myself, when there came a time for me to leave Baltimore, and everybody around me was saying, "No, there's no way you're gonna succeed." I didn't hear it as much as I felt it - I felt that if I didn't move, from where I was, for whatever I was being called to, here obviously, in Chicago... I felt that if I didn't do it, a part of me would die. I felt that I would just sort of like, not physically die, but that parts of me would sort of shrivel up in some way, and that I would not be emotionally, spiritually, myself. Did you feel that?

I just came across this video of model Melanie Gaydos from the What's Underneath Project.

What an amazing, humanizing, project and video. Usually stuff like this rubs me the wrong way, but this felt different and lacked that exploitative quality (maybe because it's not a project specifically about disabled/chronically ill people?)

I love the way she talks about her body and her life so much - I can relate to her story even though her personal and health experiences are magnified by the severity and visibility of her illness, and the intensity of the history with her family...

I discovered this video by Hank Green (of Vlog Brothers fame) last night, and had to share it here. I used to watch Hank and John Green's videos religiously, back in the Brotherhood 2.0 days (this will all be gibberish to the non-Nerdfighters out there). But then there was just so much stuff on the internet that it became impossible to keep up on everything I wanted to read and watch, so I just catch the odd video here and there... All this to say, somehow I missed this video. 

Last night I was feeling super duper down on myself and life because of how shitty and sick I've been feeling lately, and was reading some internets, and down the internet vortex I went, and I ended up at this video, and sometimes the internet is just wise and leads you to exactly what you need in that very moment. I hope you'll watch it, because I relate a ton to what he says.

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