Confessions of a Chronically Ill Girlie
If I’m honest I’ve been avoidant when it comes to writing and especially about this, and in the same vein of honesty its been what’s present in this season I’m in. I also feel it’s likely the exact thing I need to be doing in order to move through and with some of the stickiness that I’ve been sitting with for awhile now. Over the past few years I’ve been feeling myself collapse inward and get smaller in a lot of ways and after years of flexing my vulnerability muscles and leaning into the practice of taking up space and giving myself permission to be all of me I’ve found myself struggling to do just that, at least in a public or platformed capacity. Fuck ain’t it hard when you witness yourself struggling and feel like you can’t access parts of yourself that once came with ease? OUFF!
But why the sudden struggle? There are so many factors at play but one that’s feeling so loud in my body even after years of tending to it is the whispers of “don’t be a burden”. Because the season that I’m finding myself in has me questioning if I have anything to give other than the honesty and discomfort of my right now and the visceral in my face way that I’m in heading towards the trenches of illness. I guess what I’m rubbing up against while writing this very post is the notion that my voice or experience isn’t worthy of being witnessed unless it has something explicit to offer, something that can be extracted and packaged into something palatable.
Oh hello internalized capitalism, if you could kindly GTFO ugh.
Given that it’s likely some of ya’ll don’t know much about me I figure a little backstory is necessary, so let’s catch you up. I was born with a congenital heart defect called Tetralogy of Fallot with Pulmonary Atresia and it rocked me and my parents when I was born and I then surprised everyone by turning blue. To make a long story that I don’t even know all the moving parts to shorter, it meant a life in and out of hospitals and operating rooms for a pretty significant chunk of my childhood. In 2008 I underwent my 4th open heart surgery where they placed a pulmonary valve and for the last 16 years I’ve been living in a beautifully abundant maintenance phase. One that saw me meet and marry the most wholesome supportive hunk of a man, carry and birth two vibrant and incredible children and accomplish some pretty fucking badass things. In many ways the richness of the last 16 years was a life I fully believed I wouldn’t get, and it sort of lulled me into a false sense of security letting me push away the reality that I’m still sick and always will be. A reality that is now hitting hard like a two by four in the fucking face. My maintenance phase has ended and I’m once again having to sit hand in hand with my illness. To pick up and hold the pieces of little me that got pushed aside or buried beneath to make space for everyone else’s feelings and experience of me being sick while also having to hold the responsibility of being the adult and advocate for myself in an entirely different life landscape.
In some ways it’s offered me permission to creatively imagine what can be different this time around. The ways that I might like to call in support and build ritual into this next chapter and eventual surgery. An even bigger push to pull my people closer and practice what I preach in a more rich and intimate way. A push to live bigger and lean into pleasure, joy and excitement of now because although later is never guaranteed sitting with illness and what ifs has you leaping at opportunities and life in a much different way. On the other hand it’s also been visceral and fucking messy. It’s looked like tears, terror and rage while having to fight the old protective mechanisms that in the past have kept me safe, but in the present will keep me isolated. A daily commitment to stay in my body and be with what is while finding ways to not get stuck in the bigness of what I’m having to navigate to the point where I forget to orient towards all that is still good and joyful. Somedays I do a good job of it, and other days I fall flat on my face and dissociate the day away in bed. It’s not glamorous and in many ways it’s only the tip of the iceberg and by the end of this thing I’ll have no choice but to delve to the bottom of it.
It has me feeling my body changing and wondering how my life and work will have to inevitably shift with it. It has me grateful for the past 16 years and simultaneously gutted that it has to change and we can’t just stay there in the safety of what has been.
I’m finding it hard to take up space in a period where I’m actively struggling. A period where I’m being reminded daily just how little I sometimes have left in the tank as I have to wait and watch my body decline and my spirit be tested in the process. When I’m left sitting in the truth that there actually is and never has been a getting better or being well for me and I will always be a chronically ill girlie. The best I get to hope for is more maintenance, more time, and although I’ve always known that to be my reality as a construct it’s landing a little differently as I’m walking this current path. It’s hard to accept that you’re a sick person while living in a world that values wellness and condemns illness, and I think that too is one of the things that is beckoning me to show up anyway. Both for my own need to be seen in what is as a balm of permission, and as an invitation into anyone else who’s maybe struggling to take up space while living with illness.
I took these images a few summers back with the help of a dear friend Leah Fassett, and at the time they were a creative process exploring grief I had been feeling with the closing of past relationships. One of the things that I love about art is sometimes the meanings we have for a piece or series can change overtime, and now when I look at these images they feel like such a potent representation of what it can be like living with illness at times. The stain of a thing that for many can feel so fucking ugly and all consuming, something that marks and changes you in a world that will tell you to hate, change, fix your body and run towards wellness at all costs. The process of having to learn to live with it, find softness and acceptance in it as much as you also have to find your ferocity. Because navigating a world that doesn’t want sick people takes some ferocious fucking energy as does advocating for yourself within the medical system. When I look at these images I remember that I not only can do these things and am doing these things, but that I have been for my whole life in some capacity. They also remind me that I have support and people in my life in ways I never have before, and that even if it’s big, scary, messy, fucked up, exhausting and brings up all the fucking muck, I don’t have to do it alone. And yeah it will take courage to keep opening up and letting the sticky tender things be seen and held, and I know myself enough to know that the scary leap towards opening is worth it.
So here’s to doing the big sticky icky courageous thing and letting myself open while holding the OUF THIS BE UNCOMFY parts of myself while I do it and letting the people in. Here’s to working towards being the unapologetic sick chick who doesn’t deny herself care cause she’s “inconveniencing people with her bummer reality”. Here’s to living life and letting it be whatever the fuck it is in the moment and dynamically moving through it as best as I can.
If you made it all the way hot damn I appreciate you and thank you for witnessing a little of my mess.
Big love,
Lindsay (she/her)