Creativity – The Most Important Human Resource of All
Growing up, I loved the ‘creative’ lessons in school the most. I was an avid reader, I could research topics independently and I was very competent at arithmetic; however, I excelled when it came to being creative and at times, usually did more than I was supposed to. I loved invention time in Music, I loved when personal essays and creative writing were the task in English class and it excited me to be given a chance to express myself with art supplies. It has always been a part of me; the seeds were planted early on but somehow along the way, I forgot this for a long time. I’d tap into it through poetry, song lyrics and the occasional drawing in my teens but then a toxic relationship saw all my sparkle disappear and I lost myself. Once I was out of that situation, it was only just over a year later that I became chronically ill and had no time to try to piece back my creative spark or find any kind of self-confidence as the little I had gained was swiftly taken upon diagnosis.
What Creativity means to me
When I was diagnosed, like many, I was crushed. I was angry for a very long time and I felt like the universe was playing a very cruel joke on me. I had met my now-husband, and I was happier than I had ever been in a relationship and I had started to build up my dreams again with his encouragement, and then when I was diagnosed, I thought that was all taken away. I disappeared all over again. I was silenced all over again.
Early on in learning to cope with my illnesses, my husband insisted I build my skills up again and he bought me ‘Paint by Numbers’ for adults and he bought me paints, brushes and canvases on our crafting supply hauls. We would sit and make things together as part of our wedding crafts and as he’s such a fantastic digital artist, he would ask me for ideas and start creating them for me to use in projects. It felt aimless though; I felt frustrated and useless because it just wasn’t the same; I got tired easily and my focus wasn’t as it once was.
I told him it’s just not who I am any more, but thankfully, he never gave up on it for me; he kept my creative spark alive in hope until I was ready to use it again. I took up a new avenue of creativity a year or so after we got married in 2014 and more so once our elder son came along in 2016; I found a passion and love for photography. One image could capture how I saw a moment or a fragment of the world and it really excited me. It built up a new-found creative spark and I’m so glad of it because here I am, now a writer and author as it was always supposed to me.
‘Spoonies’ and Creativity
Personally, I feel that we ‘Spoonies’ make the best creators and artists because creativity requires the courage to let go of certainties and we are more than efficient in dealing with the uncertain. Unlike we ‘Spoonies’ however, creativity can’t be used up: the more you use the more you have. If only our ‘Spoons’ had this rule! It’s so easy to get discouraged when you are chronically ill from using up any energy for something joyful for yourself, but it already takes so much away from us that truly, we owe it to ourselves to be as loving and kind to our minds and souls as possible. Creative outputs are one of the best ways to do this and it opens up the opportunity of connection, not just with yourself but with others. There are a lot of ‘Spoonie Creatives’ out there just looking for people to share their art with – painted, written, sculptured, however their emotions and imagination come out best.
On my hunt for ways to share my own work, I am grateful to say I met Sara Watkins–Robinson, who has graciously agreed to be part of this blog post.
Sara has recently started up a small press for disabled, chronically ill and neurodivergent authors and artists called Spoonie Press. Spoonie Press releases a biannual Journal, available in print for a fee and online for free, which is released in June and December. It also publishes a weekly magazine, available free online, which launched on June 15th and I am very proud to have featured as a contributor to the first issue.
Sara has chronic illnesses herself and her mission for Spoonie Press is to promote the voices and give a creative and safe space for those in the disabled, chronically ill and neurodivergent communities.
This is what Sara talked to me about in her interview
Hello, Sara, and thank you again for agreeing to talk with me for M.E. Support Blog.
Thank you, Rochelle, for this wonderful opportunity. Spoonie Press is a big fan of the M.E. Support Blog (and your writing!). For those who aren’t familiar, we’re a publisher for disabled, chronically ill and neurodiverse artists and authors. We publish a weekly digital magazine at www.spooniepress.com, as well as a biannual print journal, and we run multiple online communities.
If you’re comfortable with sharing, could you disclose a bit about your diagnosis and how long it took for you to get any answers?
I was one of those kids that was born sick – I’d be sick for months at a time and I’d always get sicker than everyone else – but I wasn’t officially diagnosed until I was 25. Some of my diagnoses include undifferentiated connective tissue disease (UCTD), fibromyalgia (AMPS), and a traumatic brain injury with post-concussion syndrome (TBI PCS). Instead of throwing out acronyms, I usually tell people: ‘I have an autoimmune disorder that resists categorization, all over body pain, and a brain that doesn’t work too good all the time.’
There is still so much stigma for the chronically ill community. How have you personally found people’s reactions?
You’re right. Stigma is rampant! I spent years being told that I was a hypochondriac or that my symptoms were ‘just’ anxiety. After diagnosis, I sometimes still am told this, though not as often. It took being diagnosed for others to start seeing my pain as valid, which is a bit hurtful because nothing has changed except that the symptoms have a name. I think a lot of M.E./CFS readers can identify with this. It’s as if a word on a piece of paper has more worth than my experience, and even then, my diagnoses are not always well received. I think all spoonies can agree that it’s an uphill battle to receive help, and we often must be our own advocates. In comparison, my immediate family is incredibly supportive. I absolutely could not do this without them.
You launched Spoonie Press in April 2022. How has the lead-up been for you and how have you maintained your illness in that time?
Spoonie Press has been amazing, and I can’t believe how quickly it’s taken off. My health has deteriorated since launch but being part of such a wonderful community helps. Reading everyone’s work, providing an outlet for amazing artists and authors, and promoting our mission has brought me so much healing.
Spoonie Press has chronically ill, disabled and neurodivergent creators at its forefront but truth at its heart. Have you found it difficult to find honest representation of chronic illness before in publications?
In April, I was sent to the hospital because my hands and feet went numb, but they were also burning. What followed was an insane amount of testing, no resolutions, and most fun of all: a brain cyst. It was a low point for me. I came home and wrote a small book about how poorly I felt I had been treated by the physicians; it’s a satirical ‘guide for doctors’ called ‘The Messed-Up Medical Workbook for Complicated Chronic Conditions (and People Who Really, REALLY Want to Get Better but Literally Just Cannot)’. It’s unpublished and absolutely bonkers, but it made me laugh, and that’s what I needed. I looked for publishers to send this book to, as well as my other more serious chronic illness work, but everyone had a very specific idea of what they wanted: stories of overcoming disability; of finding inspiration in sickness; of sharing hope for successful treatment. Worse, some wanted details of the misery and pain; of the desperation for help; of the frustration at lack of diagnosis. None of those things matched my truth, which is that sometimes there are all those things and sometimes there are none, but I find comfort in laughing and complaining about it. I started to wonder how many others were having difficulty placing their truths, and then I made Spoonie Press out of that idea. Based on the response, the answer is: a lot! That’s why we never ask for specific themes – we just ask for honesty.
Creativity is a great tool for mental health maintenance and for connecting people; what creativity do you pursue for your mental health outside Spoonie Press?
As much fun as it is to edit and help writers with their work, I love writing, too. I tend to write surrealist non-fiction. Most of my work is available freely online at www.sarawatkins.net. I’m proud to say that I’m the winner of the 2022 MASKS Literary Magazine Story Award, and my work has appeared in publications such as the Bitchin’ Kitsch, Vast Chasm, and Wordgathering: A Journal of Disability Poetry and Literature. I also love to paint, colour, and throw glitter at things.
You are a wonderful creator of Quote digital art on Instagram. What quote resonates for you most in your life?
Aw, thank you! As I mentioned before, I’m a big fan of finding humour in tough situations; for this reason, most of my quotes are ‘demotivational’, though you will find the occasional inspirational quote depending on my mood. My current favourite is ‘Live to complain another day’, because it’s something I say often. My brother likes to call me and say, ‘Are you dead yet?’ (which always makes me laugh), to which I respond, ‘Nope. I live to complain another day.’
You launched your own Spoonie Magazine on June 15th which I’m very excited to have written a piece for. What advice or top tips would you personally give to someone who has been newly diagnosed with a chronic illness?
We‘re so excited to feature your article Please Don’t Tell Me to “Get Well Soon”: Changing Your Language When Interacting With Chronically Ill People. It has such great advice for loved ones of those with ‘invisible’ illnesses. Receiving a diagnosis is such a monumental, individualized experience. For some of us, they’re names to disorders we already know intimately; for others, they’re indicators of new symptoms to come. Either way, they’re usually accompanied by a feeling of grief because chronic illnesses aren’t something you ‘get over’ – there are days when we feel better, but we never truly get well. Because of this, I’ve found that you don’t ‘get over’ the grief either. The loss of normalcy can feel very cyclical, and it can be exacerbated by flares (or lack thereof). Some days will be okay, some days you’ll cry about it. Be gentle with yourself.
What is your overall goal in regards to Spoonie Press?
Spoonie Press intends to breakdown stigma and subvert the expectations of what disability should be by sharing experiences of what disability is. I want to give a home to disabled art that has been told it is ‘too much’ or ‘not enough’ (which is a real thing I hear from our authors!). We’re not looking for what makes disability sexy, interesting, or palatable; we’re looking for what makes it honest. I want to provide a space for people to rage, commiserate, laugh, or whatever their situation makes them feel. Spoonie Press is more than a publisher – we’re a community. We’ll continue publishing our biannual journal and weekly magazine; we’ll continue running disability-art-related events with our Facebook and Discord groups; we’ll create new resources for disabled creatives (we currently have a database of creative and health related information, and another of jobs suitable for disabled creatives); and we’ll open submissions for chapbooks and full-length manuscripts in the future.
I’d like to give you this space to use your voice to talk to the chronic illness community about anything important you want to cover.
Don’t let anyone tell you that you’re being dramatic, that it’s just anxiety, that you’re a hypochondriac, etc. Even if you are any (or all) of those things … so what? If something is bothering you then it’s bothering you, and that’s important! I’ve had people reach out to me and say, ‘I’m not sure this is a good fit for Spoonie Press because I don’t know if my illness qualifies …’ If it bothered you enough to write about it, send it. Most of what we publish are things that are not a ‘good fit’ for other places. Even if it doesn’t find a home with us, we’ll cheer you for having the bravery to speak your truth. Our submissions are always open.
I would like to thank Sara for her very valuable time and encourage anyone who wants to try to showcase their creativity in the community to contact her with your work. Please take the time to follow Spoonie Press on all social platforms.
Chronic illness takes so much away from us, and even though we may not be able to do things to the level we once did, having a creative output is so liberating and imperative for your mental health. M.E. Support is also always open to submission articles for the Creativity section in the Article Index of the website. Please do like, share and comment with your thoughts or links to your creative work on the M.E. Support Facebook Page.
Thank you for reading this month’s blog post. I hope you will join me next month as I discuss books I’ve been reading over the summer break and other pastime inspiration for ‘Spoonie’ life. If you would like to read more of my work outside M.E. Support or listen to my podcast, you can find it all at my website Made You Co.