Have 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.
This part, where she's talking about when she had to stop playing music and working, epitomizes what was really going on when I stepped down from my position as co-lead of Drupal's Documentation Team in January 2012, and a few months later left my job as a project manager (even though I don't think tech is my "calling", I was very dedicated to it back then). She reminisces:
I sat down with [bandmates] Jo and JD and said I can't do this anymore. I kind of felt like, spent in terms of writing songs... I lied when I said I was done - I knew I wasn't done. I just didn't want to face the fact that I was really sick. I wanted to have control over it, I wanted to tell everybody I chose to stop.
But I didn't choose. I was told by my body I had to stop. But that was really painful for me to be told by anybody or anything what I could or couldn't do. So I told myself, and told my bandmates, and told my husband, and told the world that I chose to stop playing music because I had nothing else to say.
Because that felt better to me than being in touch with the fact that I might not ever be able to do the thing that I love more than anything in the world.
When I quit everything that spring, it was mainly because I felt really spent emotionally. But after I worked my last day, I knew things weren't okay physically. I kept telling myself that all I needed was a couple weeks off, then I'd start freelancing and keep being a functional person. But my life and my health were completely off the rails. I had been so sick for so long, pushing so hard just to do the basic things to have a career and a life... I was completely fooling myself and everyone else. I was terrified about what would happen if I stopped to actually try and deal with it, and my fears absolutely came true and then some, as I crashed hard.
Two and a half years later, I haven't recovered. It was that bad, it is that bad.
I didn't only lose my ability to work, even part time, I lost my independence. I lost the ability to socialize regularly, my liberty to go out and do stuff aside from doctor's appointments or basic errands except for once in a blue moon. Sometimes I'm too sick to leave the house for weeks on end. Yes, even now. And you might not believe it because last time I saw you, I looked okay and had a smile on my face. That was me faking it. That was me trying to feel normal for a couple hours, the one time I went and did something social in the last 3 months. Or maybe, if I was really lucky, that was one of the few good days I am graced with, where for a moment I got to forget that my day-to-day life is usually so restricted.
I'm still too fatigued to do more than the basics. I'm still too riddled with digestive problems to eat anything I didn't prepare at home, nevermind absorb enough of it to be able to give my body what it needs to heal. I have a myriad of chronic pains, and a multitude of "symptoms" that I live with every single day, and they put hard limits on what I can do.
My voice problems have been so bad at times that I've had to completely stop talking for days and even weeks at a time. Today, I still can't talk on the phone for more than a half hour once or twice a week. I still can't sustain one-on-one conversation for more than a an hour or two, once or twice a week - often eaten up by doctor's appointments instead of anything "fun". I haven't been able to sing more than a few bars for several years. I love singing. I miss singing so much. The damage my throat has suffered might never heal, and if it does it will likely take many more years. The doctors don't understand what's happened, and they don't know how to fix it.
My hands are still a disaster of pain and inflammation, and though there's now a theory why, that theory is that it's permanent and will only get worse with time. I haven't been able to knit for a few years - I've got a bucket of yarn that smells like comfort and love, and all I can do is pat it and then put it back away. I can't play guitar either. I will probably never knit or play guitar again. I can only type for a couple hours a day, and when I do, I pay for it.
Think about what limiting your speaking and typing and leaving the house to a couple hours a week each means. Really, I know it's uncomfortable, but think about it.
And my GP and I are only just starting to understand parts of what is actually wrong with me, after nearly two years of slogging through all my complex issues and medical history. Previous to then, my illness and my pain were minimized my to a point where it became habitual and normal, to the point where I didn't even understand anymore that I wasn't just supposed to suck it up and keep watching myself degrade. Everything just kept getting worse because that's what happens when you are sick and you don't stop to take care of yourself. Not to mention, when you actually do try to get help and instead you get treated like shit.
Countless doctors have said things like this to me, where Kathleen is talking about being incredibly ill and having ER doctors tell her she's so ill that she can't really be ill:
The [ER] doctor...was just like, "Yah you're just having a panic attack... there's no illness that has all those body systems involved."
To be living with something and not know what it is, is really terrifying.
Maybe the scariest part is that if I'd let it get any worse, I may have gotten too sick to advocate for myself, and to realize what was going on. When you can't advocate for yourself, and don't have someone advocating for you... You're pretty much done for. If I didn't have my wits about me, and a supportive partner, I honestly don't know how I would have survived the past couple years. I am not certain I would have.
Kathleen talks about how hard it's been getting diagnosed with and treated for Lyme, and it mirrors my experience trying to get my illness(es) diagnosed and trying to figure out why I'm so sick... It's a long, frustrating, and isolating experience. Frankly, I and the other people I know who are dealing with these sorts of health issues, all kind of hope for that magical day where we might even get a concrete diagnosis that explains everything. For many if not most of us, that day may never come. She tells her story of missed diagnosis:
I have late stage Lyme disease... which means I've had [it] now for about six years [since being bitten by a tick in 2005]. I took antibiotics for three weeks afterwards, so when I got sick later, I never associated it with Lyme disease. And when it was brought up to me by different specialists, I said I already took the test. I would pull out my shitty ELISA test, that's like the $20 test that the insurance company wants you to take, show it to doctors, and nobody said, "Oh, that's actually a crappy totally unreliable test." But eventually I got a test, that's called the Western Blot test, and it lit up like a Christmas tree.
Six years to get diagnosed for something that actually can be tested for. I've been sick since 1988. That's 26 years. Prior to 2012, I was never thoroughly screened for the cause of my illness. Since then, thanks to working with a doctor who actually cares enough to try and help me get better (and who I pay through the nose for), I've now got a handful of clues that provide something akin to 100 pieces of a 1000 piece jigsaw puzzle that is all one colour. If we can put the puzzle together, then a magic 3D image will appear and it might tell us the answer. Or it might just say "try again".
There's a difficult to watch scene towards the end, where Kathleen's husband, Adam (from the Beastie Boys) is filming her while she's having a reaction to her medication dose, she says:
I just took my medication an hour ago, and I guess I'm having a reaction now... In my movie, my movie about me, I talk about having this disease, and how it makes it so I can't do things, I mean obviously I can't be on stage when I'm like this, and this is me as bad as it gets. Do I look normal? Cause this doesn't feel normal right now. But I want to show what it's like, because a lot of people get misdiagnosed, like I was misdiagnosed for five years. It invades every part of your body, and then when you try and get rid of it [Lyme disease], you have these really fucked up reactions, and you can't control your body or your speech, and it's really uncomfortable. So I'm filming it. I think that's good for now. [Joking, sort of, while crying...] We'll get a seizure [on film] later, I'm sure we'll get a seizure later...
They cut away, and bandmate Kathi Wilcox says:
I don't think people really saw her at her sickest, you know, it was just her and Adam.
Then Adam, taping himself while Kathleen's being tended to in what looks like a hospital bed:
I'm more stressed out than I've been in a long time, shit is crazy.
And then her doctor:
When you have an illness like this, it's hard to explain it to other people. The expectation out there is, "Okay, so you had Lyme disease, you took antibiotics, you should be better." When you've had it for five years, and you haven't been treated, that's not gonna be the way it works.
Then they go on to show several people talking about how they didn't know she was sick, because she acted like she was okay and then just disappeared.
This is what it's been like for me. That's what it's like for so many chronically ill people - whether their illness is ever diagnosed, whether it's treatable or not... It's so much more isolating than you could ever imagine. Not just for the sick person but also for their partner, if they're lucky enough to have one. It's so much slower than you could imagine. It's so much harder to get adequate medical care than you could imagine. People judge you like you would never imagine. You lose so much more than you could ever, would ever imagine...
And of course, because it's Kathleen Hanna, she brings it full circle in this way that I'd never thought about before, to not just what it's like being sick, but being a woman who's sick - something that hits hard on a day where just a couple hours ago, a (male) doctor was dismissive of the severity of my chronic pain because I "looked good", and was "a fine specimen." Yes, for real. And it's so typical at this point that it barely even provoked any reaction on my part. I smiled and shook his hand and left, because what else am I gonna do?
The thing that really made me change, or face it, was my illness wasn't just affecting me, it was affecting people that I love. I worked at a domestic violence shelter, and I remember women all the time saying, "I can take it, but when he started abusing the kids, I picked them up and left." They were totally protective of their children, but they weren't protective of themselves.
When I saw it affecting Jo, how bad it'd affect Jo, and JD, and Adam, and I was like, it's not helping them that I'm minimizing this. It was just so much easier on everybody if I just faced what was happening, stopped blaming myself, and fucking dealt with it.
...I just think there's this certain assumption that when a man tells the truth, it's the truth. And when, as a woman I go to tell the truth, I feel like I have to negotiate the way I'll be perceived. Like I feel like there's always the suspicion around a woman's truth. The idea that you're exaggerating.
...There's this whole fear that I'm gonna have finally fucking stepped to the plate, and told the truth, and someone's gonna say, "Uhhhh, I don't think so."
If I wouldn't have admitted to myself that the sexual abuse stuff that happened in my life - it wasn't just one thing that happened when I was little, and also how my dad treated me, and blah blah blah. It was like all of these different things. Like, I would never want to tell everybody the whoooooole entire story, because it sounded crazy. It sounded just like too big of a can of worms, like who would believe me?
And then I was like, other women would believe me.
I don't give a shit what people think. I know what's real. I don't care if people don't think feminism is important, because I know it is. And I don't care if people don't think late stage Lymes [sic] disease exists, because I have it and other people have it, and we help each other, and we know exists. And other people can think whatever they want.
My problem is when people get in the way of feminism, or people get in the way of people who are sick getting better because they don't understand it. And if they don't want to believe in it, or they don't want to care about it, that's totally fine. But they should have to stay outta my way.
In a sense, this is why over the past year or so, I've stopped talking in any specific terms, about my illness or how I'm actually doing these days. It's because I know what people who aren't sick think of people like me. I know that it's too much, and that it sounds crazy, and I know that a lot of people, people who I trusted, don't even believe me still to this day. And at the end of the day, it's just me and my partner and living our lives together, coping with things that are far from ideal.
I don't really give a shit anymore what most other people think, because those people are irrelevant in this necessarily much smaller, much more simple version of my life. But I still censor myself, because I want to protect myself. I share my struggles with the people who I know understand and won't judge me. I am so grateful for those people. And coincidentally enough (or not?) they are almost all women.
I've learned to accept that there's probably no going back to the life that I tried so hard to fit into, and keep up with. There's only forward, and I don't know what life holds for me anymore. It's scary, but it's okay. I'm getting good at accepting what is, and not beating myself up for not being able to control everything. And I'll keep telling my story, as much as I feel safe doing.
Anyway, The Punk Singer - it's a great watch for the music, for the history, for the feminism... But beyond that, if you want to understand life with chronic illness a little bit more, for your sake or the sake of someone you care about who's sick, this is one way to do it.