'A Note of Hope' from Casey, author of the 'The Body Forgot': "I wanted to celebrate the strengths and creativity of the chronically ill, while also showing that it’s okay to need support."
- Ellie Howe
- Nov 7
- 6 min read
Most of us have witnessed an awkward moment when a child says something out loud that makes every adult nearby cringe a little. For many disabled people, these moments are all too familiar - A child might point to their wheelchair and ask why they need it, or notice a feeding tube and wonder what’s “coming out of their nose”. However, this curiosity is rarely the problem - in fact, many point out how it can often be an opportunity for understanding and connection - instead what hurts the most isn’t the child’s question, but the reaction that follows. Too often a parent or caregiver rushes to hush the child, embarrassed, whispering that it’s rude to ask such things. But in doing so, an important message is quietly passed along that disability is something to be hidden, pitied, or ignored.
One person from the disability community challenging this is our latest inspiring interviewee, Casey, author of the children’s book 'The Body Forgot', published in May of this year.
As she sat down with A Note of Hope to discuss her own health journey, she explained her hopes on how the book will make a necessary impact, “Disabled people have so much value to offer the children in their lives. It’s my hope that the book helps children understand that not all bodies work the same way - and that’s okay!”
In high school, Casey was an active cheerleader and a bright student, but when she contracted mononucleosis (more commonly referred to as ‘mono’), she became too exhausted to make it through a full school day. Rather than heading to the cheer practice room to practice routines as she once had done, she now found herself often retreating to it for a quiet place to rest. However, despite this dramatic change in her health, when Casey’s mother took her to the doctor for answers, he dismissed her symptoms as “deconditioning” and advised her to push through it.
After high school, Casey began working as a fashion model, a career she pursued out of practicality rather than passion - both for financial reasons and because of her ongoing health challenges as on days when she wasn’t shooting, she was able to rest. However, while this working pattern allowed her to maintain the appearance of health, whenever she returned to her doctor her concerns were continually brushed aside as, from their perspective, she was working, traveling, paying bills, and so there was no visible crisis. Casey explains: “They’d say it was anxiety, or depression, or something else. There wasn’t evidence, in their eyes, that my life had fallen apart.”
But despite her outward appearance, Casey life was still ruled by her symptoms: “My family accepted that when I came home for the holidays. I’d often miss meals and events because I was too exhausted and had to lie down. That’s just how it was for years.“
These years of dismissal led Casey to seek help elsewhere, including from naturopaths, alternative healers, and, as she describes, “all sorts of people who mostly took money from me without helping.” As she became more immersed in wellness culture, she began eliminating more and more foods from her diet, hoping it would make her feel better. Instead, it caused her to develop anorexia and eventually led to her being hospitalised.
Although she thankfully recovered, that experience created new challenges.
“From that point forward, any time I was unwell, doctors linked it back to the eating disorder, and they never looked beyond it” she explains.
At twenty four, following another traumatic event, Casey developed chronic recurrent idiopathic angioedema with anaphylaxis - a rare condition causing sudden swelling of the face and throat. Explaining the conditions impact on her, Casey says, “It behaves a lot like mast cell activation syndrome. Not being able to rely on my own face staying the same shape - not knowing if I’d swell up at any time - was incredibly stressful.”
Although this diagnosis added another layer of difficulty to her everyday life, it still didn’t explain the many symptoms that had plagued her since adolescence. But in light of it, Casey made the difficult decision to leave modeling and, since she had always been passionate about science, decided to return to school to study neuroscience. It was at this point that she - as well as her doctors - began to fully grasp just how sick she really was as she struggled to keep up with the workload and demands of studying. It was during this time, she was diagnosed with fibromyalgia and electrolyte abnormalities, like low sodium and low blood pressure. However, because of her history with anorexia many doctors dismissed the findings and instead attributed them to her past eating disorder.
Despite her challenges, Casey completed her undergraduate degree and landed her first full-time job. But within a year, her health deteriorated so much that she had to quit. She decided to go back to graduate school, but things grew so difficult she began to feel she couldnt go on like this. Of all her symptoms, Casey says the hardest part is the brain fog. “If I could get rid of one symptom, it would be that,” she explains. “Fatigue is one thing, but losing mental clarity - losing the ability to read, to think, to connect with people - feels like losing part of my personality. I used to love reading, math, thinking about ideas, and I can’t engage with that in the same way anymore. That’s the symptom I grieve the most.”
It was a turning point in Casey’s journey when she learnt about M.E/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) as she was finally able to fully make sense of the symptoms she had been struggling with since high school. M.E/CFS is a chronic, multi-system illness that affects the nervous, immune, and energy-production systems. Its most common symptom, post-exertional malaise, means that even minor physical or mental exertion can cause a severe worsening of fatigue, pain, and brain fog that can last for days or even weeks.
With this new understanding, Casey began learning about pacing, which is a technique many in the chronic illness community employ by learning how to listen to their body to stop before a crash rather than pushing through and paying the price later. She reorganised her life around rest and recovery, finally beginning to find a rhythm that allowed her some stability. Then, just two months later, she caught COVID and was subsequently diagnosed with long COVID - a post-viral syndrome that compounded the effects of M.E/CFS. Once again, her health collapsed, forcing her to take a leave of absence from graduate school.
But despite all of these interruptions, Casey says: “Just having an explanation, and knowing I’m not crazy, has made all the difference to me.”
To find out more about M.E/CFS, click the link below:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/CFS)
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition that can affect different parts of the body.
Out of all the pain, it was her own experiences with illness that inspired Casey to create something beautiful - her children’s book, The Body Forgot. At first, the project was something small and personal - a way to help her young nieces and nephews understand why Casey often needed to rest, or why her body couldn’t always keep up with theirs. But as she began developing the story, she realised it had the potential to open up bigger conversations about chronic illness, difference, and empathy.
"I didn’t want another sad book about how a person lost this or that ability, but instead one that celebrates the strengths of the chronically ill while accepting their needs for extra rest, mobility aids, technological support, or special diets!" - Casey.
In many ways, the book reflects Casey’s own journey of learning to live with her health conditions. The story centres on Rohan, a bright and curious child who introduces readers to his many disabled friends. As Rohan visits his neighbours, readers see that not all bodies work in the same way and learn about the different tools and accommodations people use to navigate the world - such as wheelchairs - and, most importantly, what it really means to be a good friend to someone whose needs might be different from their own.
Find out more about Casey's book on her website: https://bodyforgot.com
The Body Forgot is available to order online
It is also available to watch on youtube (for free!):
At its heart, The Body Forgot is a reminder that disability is about acceptance and finding new ways to live meaningfully within the body you have. While Casey hopes the book will find its way into classrooms, libraries, and homes, she also hopes it will become a source of comfort and representation ('A Note of Hope'!) for the disabled and chronically ill community.
She concludes: “It’s really for the disabled community as much as it is for kids - Since becoming fully disabled, I’ve fallen in love with this community. They’re brilliant, creative, funny, and resilient. I wanted to create something that reflects that reality in a gentle, loving way.”
Thank you Casey for sharing your inspiring story for the 'A Note of Hope' project!
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