Hi, I'm Evalena and I'm a Spoonie!
In my early teens, when I first fell ill, I thought I could fight my way “back on track.”
I refused to believe that I would neither get well, nor live another day without pain.
But as the years went by, and my body kept deteriorating, I had to accept that
something was wrong with me. Something that went far beyond anything
that a good night’s sleep or a round of antibiotics could cure.
When my body finally caved in and filed for a divorce, I went through the standard
assessment that millions (!) of spoonies have gone through before me.
I was examined, deemed useless and swiftly deported to the Spoonieverse.
The vast parallel universe of the unwell.
Well met, friends and strangers. Another month has passed us by, and what a month it has been. I must admit this coronavirus situation is making me feel extremely uncomfortable and I don’t think isolation is going to make it any easier
As someone who is considered extremely vulnerable  I have been told to isolate for the next six months. This means no leaving the house, no meeting family, no going out to see anyone (or do anything), no doctors appointments unless there’s an emergency etc.
There was, obviously, no way I could have known the pandemic of the century was coming when I made the New Year’s resolution that lead us here. But let me tell you, I am ever so grateful that I did. Right now, I can lose myself into the daily grind on the Resilience and, in doing so, shut out the worst of the noise from the outside world.
Every time I stick my head over the barricades, the horror of our current situation hits me hard. Conversations with fellow spoonies are gut-wrenching. The anxiety in our ranks is palpable as people try to come to terms with the fact there won’t be any hospital beds for the likes of us. If we want to live, we better stay behind our locked doors and pray that our supply chains will hold.
WELCOME TO THE SPOONIEVERSE
Seriously, the people I care about are forlorn and there is precious little I can do to help anyone. The news only tell us what we already know: There is no plan, we have no resources, and a huge percentage of the population is convinced the whole pandemic is a hoax.
I can’t even…
We are struggling to work out how to survive when we have no food; cannot leave the house to go buy food; and have no idea when the government support we are supposedly getting will materialise. Meanwhile, we are bombarded with pictures of numpties who are protesting the loss of their freedom not to protect themselves and others from the plague.
I’m glad I can lie here on my Quarterdeck, gaze upon the stars and imagine what it will be like when I finally get to see my little monkey face  again. I’m heartbroken thinking of how this whole situation affects him. How sad he was when he left me, and how he has been counting down the days until we would meet again. Now we don’t even have a date anymore and I have no idea how to tell him it could be years.
Or not at all…
If you are at all familiar with the inner workings of the Spoonieverse, I’m sure you’ll agree with me when I say it seems like whoever wrote the plot for this sodding pandemic might very well be responsible for the world-building in there too. Tosser!
Ah well, at least within our own realm we have some semblance of control. A way to look after each other and make sure no spoonie is left behind. And that’s why I broke my own rule last week and went ahead with the publication of The Spoonieverse.
THE VAST PARALLEL UNIVERSE OF THE UNWELL
I started blogging about my spoonie experience after I’d been deported to the vast parallel universe of the unwell back in 2011. Having been ill for most of my life, I thought I was prepared for anything, but I really and truly had no idea at all. I was in for one of the biggest shocks of my life!
Sometimes I think that growing up in Sweden in the ’70s made me gullible in a way that sets you up for major let-downs. I was a child in a society where the grown-ups were still busy building the People’s Home. A place where you knew the Government was looking out for you and had put systems in place that allowed you to get up and fly as high as your wings would take you. Yet, in case shit happened and you fell and needed help, they would have thought of a fall-back system for that too. Sweden back in the day wasn’t flashy and luxurious, but it made sense and it kept people safe and sound. It was like a comfortable pair of old ladies shoes, if you will. And that’s a good thing. A country has no business playing at being a pair of sexy stilettosas far as I’m concerned.
The problem with this is that I have no defense mechanism warning me when there are no safety nets. Or when the systems are downright malicious. It’s like I have some check-point in my head where the operator flatly refuses to believe any government, or government official, could be false. Or worse, evil. I can be such a sweet summer child sometimes.
When I crashlanded in the Spoonieverse, I was shocked to realise there was no security system. I was stuck in bed knowing full well that not working = not making money = financial ruin = no roof over our heads and no food in our bellies. And no one could tell me what to do!
In the end it was a new friend from oop north, and the generosity of a beloved partner, that saw us through. I had no support from any official body or entity, and it took almost a year before all the paperwork had been sorted and I received my first Disability Living Allowance.
My hope for The Spoonieverse blog was always that someone else might take comfort in reading about my experience. And that maybe, if I could get more spoonies to add their voices to mine, that we could save someone from having to live through that nightmarish no man’s land they dump you in after you’ve been declared useless.
With the Spoonieverse officially open (even though it’s far from finished), we now have access to five areas here on the Resilience. My work is far from done, but these days it doesn’t even feel like work. Everything I do now is fun as I can see the difference it makes with my own eyes.
Thank you for stopping by today. I do enjoy having visitors around, and I’m considering putting up a special noticeboard so you can help me spot things that need fixing. Would you be up for that? Who knows, I may even decide to turn you into a deckhand before we take our lady out on the seven seas… 😉
Righteehoo, my friend. Follow the links if you want to check out the new site. I don’t have a Swedish version of the Spoonieverse site, but for access reasons it will have both audio and easy reader versions of each post coming up. Now, I need to get my backside up in the rigging again if we are going to have any more log entries to look forward to.
Cheerio, sailor! See you next time.
- “Extremely vulnerable” is a stamp the UK Government has put on yours truly and those of my fellow spoonies they have deemed unlikely to survive a tête-à-tête with the vicious virus.
- The monkey face is my darling grandson, best buddy and side kick. He lived here with me before bloody Brexit tore our family to shreds.
After 25 years of anonymous blogging on a number of free platforms, Evalena Styf decided to go pro and put all of her writings on a private wall. In her personal blog, she primarily writes about personal and professional development; about living the dream; and about how to keep on living and loving when everything seems to be falling apart.
Using her knack for storytelling, Evalena dives into a sea of personal and professional experiences to bring a wide range of difficult and diverse topics to the surface. Get onboard and let’s talk about funkophobia, social exclusion, chafing societal norms, mental & physical health issues, racism, poverty, identity, creativity, nerdiness, lusting for life and longing for death. Then we’ll have a bite and proceed to the heavy stuff…
FINISHED READING? WHAT WOULD YOU LIKE TO DO NEXT?
QUESTION OF THE DAY:
Have you, or someone you know, ever been to the Spoonieverse?
Today, we’re talking about disability and the fact that my disability blog, The Spoonieverse, went live last week (on the 25th of March). If you have any experience concerning disability, disabled people or the friends and families of disabled people – please slide into the comment section below and share something with us. Or head over to the Spoonieverse and leave a comment or two for us over there, Or both. Let’s talk!
Remember, if you don’t want your name or your response to show up on the site, just start your message with the word ANONYMOUS and it will be our secret.
IF YOU WANT TO HELP:
I talk a lot about myself and my life in this blog, but I’d love to get to know something about you too. If you have a minute, please slide into my comment sections and let me know something. Tell me what you thought of the article you just read, ask me anything, and let me know if there’s something else you’d like me to write about. If you don’t want your response to show up on the site, just start your message with the word ANONYMOUS and it will be our secret.
The number of people reading, following, liking, sharing and commenting is tracked by google and other search engines. The more engagement my blog creates the higher my chances of being promoted when people are looking for something online. And this is, of course, like the holy graal for professional bloggers.
If you’d like to give me a hand and help me grow my blog, I would greatly appreciate it if you could share (and like) my posts online. Use the buttons below to share this post and link back to my blog from pinterest, facebook, twitter, linkedin, whatsapp etc. If you tag me when you do, I’ll do my best to stop by and say thanks.
If you want to share posts or quote parts of them in other contexts, remember to add me as the source and make sure you include my name, the title of the article, where and when it was published. Here is an example of what this could look like:
Styf, Evalena. 2020. Article Title. Quarterdeck. [Blog] 1 januari. http://styf.co.uk/YYYY/MM/DD/title-of-article/ (Accessed YYYY-MM-DD).
Another way you can help me grow is to follow me online and like-share-comment whenever you see an update from me. I have several accounts, as you can see in my linktree, but my main accounts in English are Evalena Styf on facebook, Evalena Styf on instagram and Evalena Styf on twitter.
My pinterest account features a wide range of boards covering all sorts of topics from Arts & Crafts to Zoom calls. I will also be posting a new pin every time I upload a new post. You'll find it at Evalena Styf on pinterest.
My Monthly Missive, aka a newsletter, will be rolled out in 2021. Sign up now to make sure you won’t miss out and to secure your special gift that I’ll be sending out to each subscriber who signed up before the launch date. Signing up is lemon squeezy – all you need to do is to put your first name and email address into this form.
Would you like to read more blogs in English (or Swedish)? If that’s a yes you’re in for a treat! On top of the Ship's Log here on the Quarterdeck, I have two personal blogs (All of Me in English and Hello Kära Gamla Sverige in Swedish) and a number of special interest blogs you might like. I will keep moving them over here and add new links as they materialise.
You can find links to the blogs that are currently available at the very bottom of the right hand side column. If you want to know more about them before you check tham out, you can have a look at this blog family tree.
I’ve been an amateur blogger for just over 25 years now and I have learned a lot (about a lot of things!) over the years. Like the fact that one of my most frequently asked questions is how you can support me and help keep my posts coming.
As I transition into professional blogging, I’ll happily accept any offer of help and support to get wind in my sails. Most of all, I need help growing this blog. I’m well aware of the difficulty getting blog portal readers to tag along to a private domain, but with your help we may be able to grow the numbers enough for google and the other search engines to recognise me. And that is something of a requirement for pro bloggers. It’s a “without google’s spotlight you don’t exist” kinda thing.
When you read, share, like, comment, follow and subscribe, you make me ridiculously happy and grateful. A frame of mind that makes me work harder, which in turn means I churn out more blog posts. Winner, winner chicken dinner! =)