Aaliya Essack has Ehlers Danlos Syndrome, a rare genetic disease that causes her body to produce faulty collagen. As a Patient Voices Ambassador for Rare Diseases South Africa (NPO no. 120-991), she writes about her love of reading and a project called “Imagination Stations”.
Escapism is often a means of survival to those of us getting through chronic illnesses. It’s not simply mindless or even an indulgent selfcare tool, no, I firmly believe escapism is survival. We all use different means, music, daydreaming, books, traveling when we can, exercising when we can, spending time with people we love, binge watching our favourite shows or even passionately arguing politics, but it takes you out of the moment, out of your body.
To me it doesn’t mean the pain fades or my circumstances magically improve but escapism means I can survive. For as long as anybody can remember, you’d find me with a book in my hand, now it’s sometimes a Kindle to give my wrists a break!
Reading was everything: a generational love passed down in my family, the wisdom passed down of the power and promise that books hold, and the knowledge that the pen will always be mightier than the sword.
My Ehlers-Danlos journey began when I was too young to remember. My dislocations and other symptoms were there from as early as a few months old but it took 18 years to get a name to pull all the symptoms together and finally feel like I wasn’t totally losing my mind.
In the meantime, there were plenty of hospital stays, surgeries, tests, severe infections it would take an age to get over.
But through all of it, I had my books. In the last few weeks I’ve had occasion to share this story a few times but one of my first memories of being in hospital is being in isolation, very sick, with my mother stuck to my bedside reading my books to me.
I can still remember the books, the young sleuths solving crime over the Internet, one of them a boy that was disabled and very easy to relate to. I might have missed out on so many social norms of growing up, so many rites of passage I missed out on, being unable to ever truly immerse myself in school and the world around me; but my books could take me anywhere.
The power of reading flew me out of my hospital beds or out of my bedroom, it took me on expeditions to the Hundred Acre Woods and with great anticipation to the top of the Magic Faraway Tree, I solved crimes with the Famous Five and Secret Seven and got in on midnight feasts and pranks at boarding school with the girls of Mallory Towers. I was transported to new worlds with Narnia, and don’t get me started on my daydreams of how in an imaginary world I could probably get away with playing Quidditch and not break myself in half!
As I grew, my books grew with me, taking me to places even further away, back in time to learn more about wars and understand suffering is not singular or limited to me. My reading choices reached into the nuanced places of mundane life to help me understand just how different the human experience can be, how deeply our choices define us and how not speaking up and using our voices when we have an opportunity to do so is cheating ourselves.
It has expanded my mind and constantly taught me more about the world, about people and about myself. Not that I only stick to the serious stuff! There’s plenty of light-hearted humour and romance, fantasy and easy sunny day reading too. If I can get my hands on it, chances are I’ll read it.
I crave that excitement of cracking open a new book, getting dug into a new story and shutting out the world. Books have indeed become a way to escape my body and take my mind off to different places and times.
There are times I feel as though I relate to the characters so deeply they feel like friends and family to me, but like I said at the beginning of this, escapism like this is survival.
There are the days when I can’t get out of bed because the weight of everything is too much and the pain is too much and in general, everything is too much. So I hide under my covers and read until I feel my mind going off and once its travelled far enough for long enough, it’s usually ready to come back and face what comes next.
Books and reading have also opened up my imagination and creativity in ways I couldn’t dream would have existed. They’ve been my guide to writing and writing has been my biggest coping skill. Realising that with my body, unlike in life, in writing I’m only limited by my own imagination; it’s liberating beyond belief and healing even when what I’m writing has nothing to do with my illness.
But I’m able to communicate my experiences better because of what books have taught me and that’s also important in advocacy and education. Books shaped my writing and my writing has allowed my family and friends to understand my circumstances in a better light, they may never fully understand what I feel or how deeply it affects me but my writing has definitely brought a deeper understanding that has greatly improved my relationships with people and also allowed them to see chronic disease in a different light.
This is why I’m so excited to be working on my dream passion project right now, a time when more than ever, the world is under the worst kinds of stresses and escapism has never been more important.
A year ago, after a long time of wanting to be involved in advocacy and wanting to help educate people but never feeling like it was the right time, or feeling brave enough to dive in, I took the leap and signed up to be a Patient Voices Ambassador for Rare Diseases South Africa.
One year in and I’ve just gotten to start digging into a project I’m completely in love with. People like you and I, children, teenagers and adults, across my country are stuck in hospitals, suffering from genetic and congenital diseases that require long term care or treatment.
Oftentimes people don’t have access to care where they live so they’ve travelled far and are stuck in underfunded, overwhelmed government hospitals that are trying their best, but most of these people are all alone with nobody from home to pop by and cheer them up or any kind of escapism at all. I can’t imagine it, I think I’d lose my mind before anything constructive could be done to help me and yet it is completely necessary.
But we know, I know and you know, escapism is survival, it’s how we cope, it’s how we get through the pain and everything that gets thrown at us.
The project is to hopefully build mini libraries, bookshelves called “Imagination Stations,” filled with new and pre-loved books in good condition, that these patients, adults and children alike, can use to escape their circumstances and enjoy being temporarily transported to a different reality.
People shouldn’t be limited in their escapism and children have their imaginations curbed because they’re sick and stuck in hospitals that have to prioritise medicine over providing something as simple as books.
Unfortunately with Covid-19, people don’t have a lot to spare which is completely understandable but we’re trying to get word of our project out there as much as we can. I’m hoping everybody reading this will give my Instagram page a visit @liyae3 or visit Rare Diseases South Africa @rarediseasessa to find out more information and help us spread the word.
Let’s help get these kids reading and dreaming!
* Donate to this intiative: givengain.com/cc/imagination-stations