Life with chronic illness

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.

I've been biting my tongue on this for so long... I know how some of it is going to sound. No, really, I know. People just don't say these things, or maybe they don't think about them or realize at all. It's very real though. There is a hierarchy of illness, and it leads to massive inequality among people who are sick. It leads to unthinkable hardship for those who have the "wrong" kind of illness. It's like some form of sickness-ism (discrimination of sick people based on exactly which type of illness they have).

My friend Stephanie summed up life with ongoing illness so well:

"It's very upsetting to wake up day after day with hopes and plans and dreams and be completely unable to do any of them."

I quoted what she'd written on Facebook, followed by my own addition:

I often think about how lucky most people are to just be able to do what they want without such immense and non-negotiable restrictions. I don't think I even remember what that's like anymore.

That I can usually cope with. What's hard to cope with, what makes me really sad, is how people who haven't been through this can't understand it. They still believe somehow it's a choice. That if I really wanted to, I could just do things. That the barriers are only psychological (and I don't mean mental illness, I mean lack of will or motivation).

I will never be able to understand how anyone could truly believe that someone, that I, would choose to live like this.

But this problem is a symptom. I've been thinking about why this mentality exists, and that's my conclusion - it's a symptom... of the hierarchy of illness.

Last week, I wrote this long blathery post about navigating friendship with chronic illness. Then I sat on it for several days. I'm still sitting on it. Something about it didn't quite feel right...

Friendships, or really any relationships, and how they last or don't doesn't actually have much to do with whether you're chronically ill or not. Chronic illness is just one among the many things that can make or break any close relationships - things like going through a breakup, a divorce, a death in the family, a major career change, financial woes, the birth of a child... Anything that shakes you out of your routine and your comfort zone, and pushes you into the unknown, into grief and loss, or the new and unfamiliar. Anything that makes your life afterwards somewhat (or very) unrecognizable.

I've lost a LOT of friends over the past five years. If I started listing them all, I might have a full on self-hate and shame meltdown. ("It must be me!!!!" "What will people think????") It'd be like having a scarlet letter on my sweater - except F for Failed Friend.

The thing is - it is me, not them. Yes, me. My unwillingness to be taken advantage of. My unwillingness for a relationship to be completely on another person's terms. My failing tolerance of my kindness being taken for granted. My finally standing up for myself, and learning that I am worthy enough not to go chasing and pandering after people who don't really care about me the way I deserve.

It's been a while now since I've come out of denial about my illness. I've had some time to at least begin to grieve the losses that have come with it. Friends, family, future plans, hobbies... my loss list is long and detailed. I have also been able to receive some gifts from my illness - it's not all loss. But the gifts don't make the loss any less real, any less difficult.

One of the bigger things I've lost is my ability to be gainfully employed. I haven't been able to work even part time in over two years. All the shame, judgment, and social implications aside, there is something that feels degrading about having my daily purpose and to an extent, my financial independence stripped away. These have probably been the hardest for me to adapt to. And yet, adapt I must and I will!

IMG_3494
Me, at peace, making art in my home studio, 2013
I want to maintain this elusive calm in my work life

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