Chronic illness

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.

Hi nice people! I had a really crazy December and January, dealing with a family emergency and then working on recovering from the terrible health flare that it set off...one of the worst bits of which is my hand/finger joint pain went through the roof, making typing something I've been having to moderate even more than usual. But just the last few days I've been starting to see some light at the end of the tunnel, something I always find uplifting after a long slog through flare-ville.

Lots more to catch up on, but for now I just wanted to share some neat stuff I've come across recently in the textile and sewing world...

I guess the end of the year is as good a time as any for this big, nay enormous, long overdue health (and life) update - how appropriate that this is (in Drupal-speak) "node 1000", aka. the 1000th post on this site! December just had some surprises in store for us, and I got a bit sidetracked and wanted to get this one done first.

You may not have noticed but over the past couple years, even though I've continued to write posts about health and chronic illness, most of them haven't been particularly specific to what's actually been going on with me. I've written a few posts about my throat issues and adrenal fatigue, but otherwise I've been sticking to more general conversations about the ins and outs of living with chronic illness. I wish I could tell you that this was simply because of my commitment to speaking out about chronic illness, but that would be leaving out a significant portion of the truth. The truth is harder to talk about and more complex. 

My desire to keep personal details hush hush has unfortunately really cramped my ability to write about many topics that I have a deep desire to write about. Specific health issues, work plans, personal/family relationship stuff... I've been thinking long and hard about this, and have waffled back and forth several times about it, and have finally decided that it's time I just have out with it all so I can get back to really talking about all the things I want to here.

IMG_1780

Now, where to begin... Maybe a recap.

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.

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.

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

Limits. We don't like them. We don't want to be told by anyone - not even ourselves - what we can or can't do. That each of us will eventually hit a wall at some point.

While working on my previous post on illness and beauty/body image, I had several conversations with different friends, and one of the topics that people kept really honing in on was denial. An email exchange with a friend turned into a long rant on my part, and I thought it was worth sharing, so I've fleshed it out into this post - I feel like it's a very important awareness to develop.

loss-final
~ Let your loss set you free Heartgirl by Ariane K ~

Pages

Subscribe to Chronic illness