Mom losing trust in medical system. I LOLed when I saw this recent note from our nurse in my kid’s file. The joke is on you, I thought. I lost trust in the medical system the night Jo was born, nearly 18 years ago.
Without sharing deeply personal details regarding health history, I’m hoping to briefly summarize what 2024 has been for myself, my child and ultimately, Starshaped.
Respiration was printed in 2019, as Jo struggled with the side effects of radiation. Read more about it here.
In 2018, Jo had chest radiation following a number of tumor resections. Radiation left a wake of disaster that, coupled with pre-existing issues and those greatly exacerbated by this toxic dump, has meant a steady decline in overall health ever since. In February of this year, Jo had a routine procedure that turned out to be anything but, leading to a massive infection and a hard drop off the cliff to which we clutched. Since then, Jo has been in the hospital more than out; when not inpatient, appointments are as frequent as 3-5 times a week. ‘Progress’ looks like two steps back, one forward, if we’re having a decent week.
Just one of many attempts at design projects in the middle of night, waiting on scans.
For those with chronic health conditions, meaning those that don’t ‘get well soon’, what I write will not be news. The quick shift of blame to the patient for a condition not obvious on tests, that requires multiple specialties to talk to each other, is as present in medicine as the ubiquitous blood pressure cuff. Throw in a teenage body assigned female at birth and it’s even worse. It has not been uncommon this year to hear: ‘It’s all in your head. Let’s get psyche involved.’ ‘Try harder!’ ‘Have you looked on the internet?’ ‘Why does a diagnosis matter?’ And nothing stings quite like ‘close the loop’ corporate speak, which serves to remind us that it’s private equity bros behind healthcare and not necessarily the Hippocratic Oath.
It's all in your head... something Jo has heard since the tender age of 11, despite having tumors so rare there's no pediatric doc in the country dealing with them.
We drag ourselves to multiple institutions as no one hospital can offer everything a chronically ill person needs; more often than not, it’s private pay clinics outside of the system that offer the most hope and help, further separating the haves and have-nots. Not every doctor is equipped to handle the nuance of a multidisciplinary approach to complex situations, and hospitals often do more harm than good. A lot of late nights are spent spiraling into Pub Med studies with a dictionary next to me, piecing together new ways to look for clarity and how to demand the help we need. How can I adequately advocate for people and places Starshaped has always supported when I can barely do so for my child? That said, remember to vote for those not actively campaigning against the freedom to read.
Printed in 2023, Tummy Ache is a print/artist book that combines what we've heard in doctor's offices in regards to GI issues, coupled with those heard by other community members. Grateful for the deeply distressing comments that were shared with us for this project.
2024 is Starshaped’s 25th year. In 2019, when the shop turned 20, I spent a considerable amount of time planning, updating marketing strategies, tweaking our online presence and scheduling events. The work paid off and it was the first lucrative year since the loss of my husband in 2016. The plans for this year were as ambitious but derailed by the steep decline in Jo’s health and the full time job of caregiving (I see your never-ending work load, caregivers of the world). Most custom jobs had to be declined or put on hold. Output has largely been limited to the Print Club and I’m eternally grateful to subscribers. A new artist book sits on galleys, waiting to be printed. I’ve turned down countless offers to speak and teach, dying a little inside every time. 2024 is substantially less celebratory but we are cautiously optimistic a few of our regularly scheduled fall events can continue, like the upcoming Ravenswood Art Walk.
I’m embarrassed by the lack of output this year. I hate feeling like the world is passing by. I miss seeing shows, movies, galleries and perusing book stores, seeing friends and having unlimited time to print, especially when it creates a sense of calm and acceptance. Jo and I share a lot of grief because my ‘medically complex child’ (system speak) is 17 and should be enjoying the independence of a young adult, not feeling like they are reliant on a parent to help them with tasks as seemingly simple as putting on shoes.
I uncomfortably write this State of the Studio, as I’m reluctant to share major bummer details when everyone is fighting something somewhere. There’s also not a lot of time to do so, between constant cleaning, yard work, schooling at home, keeping the business going and figuring out how to clear out a garage and build a wheelchair ramp on top of daily caregiving. I write to ask for grace and to thank those who have stepped up in any way, even to purchase a card or print. There is no end in sight right now for the burden of managing care at this level, but the idea of hope is never completely out of the picture, thanks in large part to our community. We hope to see you soon.