Brittle Joints

by Liz Argall

Summary

Maria Sweeney is an artist. She has good friends, a rare genetic disorder, severe chronic pain, and is an ambulatory wheelchair user. In an era of increased (invisible) disability awareness “thanks” to long Covid, Sweeney’s book is a timely examination of what it means to live with a chronic disability, navigating medical bureaucracy, a multitude of micro aggressions from often well-intentioned people as well as experiencing the joys of supportive friendships, love, and the power of micro-affirmations.

Pain, especially chronic pain, can disrupt a person’s sense of time. This lyrical work explores the past, present and challenges of creating a sense of future in a way that is specific and speaks to universal truths. It explores the variety of medical treatments Sweeney has endured, “Even surgeries the doctors deem as success for me have come with a series of losses and unexpected compromise [p. 99].” As the opioid crisis kills people, Sweeney has to go through the soul crushing processes to get medical marijuana, a pain relief that actually works for her without many of the side effects of over-the-counter medication. As one health care provider observes, “It’s easier and cheaper getting a script for Vicodin [37].”

I recommend this book to people with disabilities who want to feel seen and have a sense of comradery. I recommend this book to people who know folks with disabilities and want to see a bit of what it’s like. Most importantly, I think it should be required reading for anyone in a healthcare setting, whether it’s a doctor, nurse, assistant, receptionist or someone who will interact with a patient in any way. Medical settings can be vulnerable, exhausting, frustrating and painful. Casual ableism and accidental micro-aggressions have an impact. I hope more people in medical settings read this work and do better. Sweeney’s negative experiences with medical personnel are far too common.

Experience of the story

I was excited, and a little nervous, to be offered the opportunity to review this book. Navigating chronic pain in one way or another has been a big part of my life, and Sweeney has experienced a very extreme form of this. I’m pleased to report that this book was indeed a pleasure, I was transported into someone else’s lived experience, learned new things and had things familiar to me feel heard and seen. This book is an important piece of disability advocacy, and I commend Sweeney for the grit it takes to be an artist and to make such personal work.

Comics are a beautiful form of poetry, words and images combined with such precise intent. The creator has to choose, is it this exact moment or that? Is it a moment briefly sketched or languorously stretched out? To create a comic well you need to create a sense of push and pull, like a dance or music or an ocean wave. Sweeney’s sense of rhythm is beautiful. There is a lyricism to the art and phrasing that draws you through the highs and lows of Sweeney’s life.

I like to underline the moment when I’m captivated by a story. Brittle Bones has a strong opening, most certainly, but the moment I was captured was on page 7 when her younger self puts a flower in her hair. The poetry of picking a flower to the tune of “Why am I this way? … I don’t know. … I don’t feel different [5].” and the kindness that came after was a perfect gem.

In this book we weave through the past, present, and the challenges of thinking about what a future could even look like. Sweeney’s drawings of nature, flowers especially, are a connecting note. We as the reader are grounded by flowers as Sweeney herself is grounded by them.

There are a few spots I’d like to highlight with particular glee.

In the preface, when Sweeney is asked to rate herself on a standard pain scale from 1 to 10 I felt my gut clench. Anyone who has experienced chronic pain knows how fraught those pain scales can feel. When she said “Eight,” my first response was a fist pump, you go girl! You claim your actual level of pain!” This was swiftly followed by me thinking, “Oh shit, that must mean it’s really really bad to have that level of self-advocacy.”

From Preface of Brittle Joints

The love story… was beautiful, tender, understated and kind. THEY HOLD HANDS! It was my kind of romance, through and through.

The experience going into the city for a doctor’s appointment, was resonant and spoke to the pains of so many “zebras”, those that fall outside the norms of standard medical practices. The stressors of needing to “perform well” and how encounters can become not about the patient is a powerful story of something that happens all too often.

I’ve been thinking a lot about how we can create gentle spaces for being seen, feeling heard, and expanding our understandings. Sweeney’s work definitely does that and I hope it builds spaces for much better conversations … conversations that parts of the medical professions have been having, but really need to be extended!

Unless we’re very unlucky, we’ll all be disabled in our lives at one point or another, be it short or long term. I commend Sweeney for the advocacy in this text, creating spaces where disabilities are less disabling will benefit us all.

Illustration by Reviewer. https://www.patreon.com/posts/115490175

Illustration Accessibility Transcript:

Caption: Morning

Little Liz is lying on a bed, her physical therapist (a smiling flower) is applying dry needling to her right arm. This means she has two acupuncture needles in her right arm attached to a tens machine that puts electricity through it.

Little Liz: Physical Therapy. I’m doing pretty great these days, but Hypermobility Spectrum Disorder means regular maintenance.

Caption: Afternoon

Little Liz is at her laptop.

Little Liz: For sure! I’ll review Brittle Bones!

Caption: 20 years ago

Little Liz is sitting in the shower crying.

Little Liz: If having two showers in a row standing up feels like an impossible goal in my 20s, why would he want to be with me when I age?

Big love heart.

I’m so glad we both found love.

I’m so pleased Sweeney has carved out space for her to be seen and thus help many other folks with disabilities be seen.

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Liz Argall’s work has appeared in multiple outlets, including Uncanny Magazine, Strange Horizons, Meanjin, and Antipodes; A Global Journal of Australian/New Zealand Literature. She contributed to multiple roleplaying games, including Geist 2nd Edition and 13th Age, and is a strong proponent of the healing power of play. Her webcomic Thingswithout.com (a thinking person’s whimsy, a hug when you need it), touches on many topics close to Graphic Medicine. You can see a more diverse range of her work at https://www.patreon.com/c/lizargall (there’s even a free tier you can subscribe to). Liz lives in Seattle, but her heart misses the big silly birds of Australia.