Kimaya Diggs Deeper 004: Ouch! Chronic illness & artistry
That’s why they call this shit chronic
Song of the day
The song of the day is Been to Canaan by Carole King. I just discovered this song and I’m obsessed.
Ouch! Chronic illness & and artistry
So, I just got home from the Arthritis Treatment Center! It’s just one of the many (maannnyyyy) places I go on a regular basis to manage my health, or lack thereof.
I’ve lived with chronic pain and chronic illness for more than half of my life. I’ve had a bleeding disorder since I was thirteen (that I’ve written about here), an autoimmune disease since I was sixteen, and on the morning of my high school graduation, I woke up with weird back pain that has never gone away. The world was like, welcome to adulthood, I guess. Then I developed another autoimmune disease. Once you have one autoimmune disease, your chances of developing another one go up as the widespread inflammation in your body throws more and more systems out of whack. Gotta catch ‘em all! 🙃
I’m not getting into what my specific ailments are called, but I’ll tell you a bit about what it’s like to live with chronic illness & pain as a creative person, and how my health has challenged and bolstered my creative practices.
Living with chronic illness shows you exactly how everything is connected.
The big issue with chronic & autoimmune illness is that every single issue is connected to every other issue. Here’s a small example: I got vocal surgery in 2019 because I had an injury that prevented me from singing > throat nerve damage from being on a ventilator > it makes me cough a lot > and inflames my vocal cords > which means I can’t sing > my autoimmune drug makes my immune system weak > so I get a stomach infection > which caused reflux > which inflames my vocal cords > have to take antibiotics > they kill the bad bacteria > and the good > weakening my immune system more > I get a cold > nasal drip inflames my vocal cords > meaning that I can’t sing > stomach infection leads to weight loss > weight loss means my arthritic joints are too cold > my mobility becomes limited.
That’s just a small example.
Oh wait, also the reflux caused tooth damage and I had to spend several thou on fixing my chompers.
Being chronically ill makes me an excellent multi-tasker and has made me more comfortable having several balls in the air, which I always do as a musician.
It’s also made me acutely aware of the fact that there’s no such thing as wasted time. I’ve played plenty of shows to fewer than 10 people. I’ve worked hard to book shows that end up sucking. I’ve put tons of effort into projects that go nowhere and serve no greater purpose. But every time I take a moment to express myself, my expressive skills grow stronger. Every time I share my perspective with the world, I feel more comfortable taking up space, and the world knows me, and people like me, better. Nothing exists in a vacuum. Everything is connected and leads to unexpected things — often good things.
Being chronically ill helps me prioritize resource use.
Having pain and fatigue means that I’m not always able to accomplish everything I want to in a single day. I have to prioritize tasks and projects, and allocate energy to the things that will allow me to do more down the road.
When I’m working on new music, it’s a similar balancing act. I could record my own vocals for $0 over ten hours, or I could pay someone else to record me for $350 and get it done faster. I could make a music video on my phone, or hire a crew. I could finish a new song or update my website, respond to booking emails or schedule rehearsals. There are always choices to be made.
My illness has helped me funnel my resources (money, energy, and time) towards the most important aspects of my work. It can be harder to identify priorities in creative work as opposed to health, but the skill set transfers fairly well. I also find that my instincts become more reliable over time as I learn how to triage resources towards areas of higher value.
Being chronically ill helps me accept, adapt to, and transcend limits.
I’m a stubborn bitch. There is absolutely no way to prevent me from doing something if I want to do it.
I said it best – ‘I get what I want in the end.’
Practice doesn’t necessarily make perfect, but it makes good enough. My ‘get what I want’ muscles have been finely toned by wrestling with my body’s abilities and needs every single day for over a decade. I stand firmly in anything worth doing is worth doing badly and quantity over quality as life & art philosophies (for the most part).
I’m strong, but I wish I didn’t know I could be this strong. Limits, who?*
*I acknowledge that this is perhaps not the healthiest of mindsets, but it’s where I’m at right now! I’ll sleep when I’m dead :/
Being chronically ill lets me define myself in my own terms.
Even if we’re close, here’s something that might be news to you: I’m disabled.
My needs and abilities change from day to day. Sometimes I can’t hold my water bottle or walk very far. Sometimes pain drains me emotionally. Sometimes I’m brokenhearted upon discovering something else that I can no longer do with ease. I struggle to figure out what to call myself. I’m always disabled, but sometimes I don’t feel or appear disabled. I have a hard time explaining my physical limitations to even my closest friends, partly because I’m just learning them myself, and partly because I don’t feel like I deserve to to take up space under the Disability Umbrella because there are people who have it worse – even when I can’t pick anything up or walk very far. I’m always working on my internalized ableism.
A disability like mine is called a “dynamic disability,” in that my appearance of disability and my physical needs change frequently. My friend Cheyenne Smith wrote about her own dynamic disability, if you want to know more about what it’s like living with a disability that your nearest and dearest family and friends may not even know about.
My health puts me in a middle place.
My body has made me more comfortable existing in the in-between spaces of definition. I mean, as a mixed person, I’ve already always existed in the middle area. As a bisexual person, I exist in the middle area. My body’s abilities and definitions exist in the middle. And my musical artistry exists in the middle, too.
It can be hard to exist in this space. People are desperate for others to fit into boxes and be clearly defined. When I was pitching my album Quincy to labels, I got lots of lovely rejection emails that all basically boiled down to: we really like this record, but we can’t figure out what it is. And of course, in the music industry, like any other industry that monetizes creativity, there’s no room for slipperiness or ambiguity or in-between-ness. I mean, look at the pushback against Beyonce releasing a country album, or even the way my friend Lizzie No’s Black, queer country music continues to baffle many critics who are unable to reconcile how they look from how they sound.
Whether or not you’re someone who’s comfortable existing in the in-between space, there is always pressure to align with one side or another: to make yourself more digestible and comprehensible to an audience whose short attention span and short supply of curiosity of and critical thinking prevents them from taking in-betweeners seriously, and investing in their art, wellness, and creativity.
I generally enjoy existing in this middle space, but I’ve also longed to be simpler and easier to understand at times. I used to walk through the mall looking at other kids and wishing I were white. I used to curse the “fact” that my depression meant I would never find a partner. I used to wish I didn’t like girls and theys as well as boys because there was already enough for the world at large to hate about me. I used to wish I were shorter and smaller so I could take up less space with my confusing presence. I used to wish that people could figure out my ethnic background by looking at me (I’m Indian and Black, for the record) – that I could just look like something that people could make sense of. I used to wish I made music in a single, well-defined genre, and had a body whose problems resolved and softened instead of compounding and multiplying.
But now, when I create something weird, wonderful, or amazing, I think: of course I did that. When I see myself in a shop window with my long arms and big hair, I’m grateful that I have this form in which to experience the world. When someone asks what arrrrre you? I stand in my pride and on the shoulders of my ancestors. My queerness is my very own, in spite of rampant biphobia even within the queer community. And when my body throws another dang wrench in things and develops a new pain, a new quirk, a new issue – as my body becomes increasingly disabled – I settle into my seat in the in-between place and know that I can call myself whatever the fuck I want.