When the Spoonieverse moved in here,
it was the beginning of something new.
But this blog is not new.
In January 2021, it will be ten years since I wrote
my first dedicated Spoonieverse post and
today I’d like to share it with you.
They Deserve So Much More
A spoonie family tree featuring the fruit of my womb: Five young carers.
For many years now, my kids have been my carers for longer periods of time each year. It started gradually with the onset of my arthritis. As time went by, my condition got worse (as did my patience and my temper) and in response they shouldered more and more responsibilities; from the practical stuff like grocery shopping and window cleaning to more private matters like getting me out of bed and helping me get dressed.
This year, I have to address quite a few things in order to set my kids free. They’re not supposed to be looking after me. They’re supposed to get out of here and make a life for themselves.
I’m expecting a visit from an Occupational Therapist one of these days. It’s something I’m dreading to be honest, but it’s good. And it’s the right thing to do.
But let’s not worry about that right now.
Right now, all I want is to tell you just how fabulous my kids are. And have been. If someone deserves more credit than they get it is each and every one of my kids. (Evalena Styf, The Vast Parallel Universe of the Unwell, 02/01/2011)
It sure is funny how the spoonie mind works. There are so many important moments of my life that I really struggle to reach, in this foggy old Random Access Memory brain of mine. Precious memories of days and events I long to recall take days, if not weeks, to locate and download. Yet this one, a simple act of jotting a few lines down in a blog post, stood out like an over ripened cloudberry just waiting to be brought straight out of the fen into the jam jar.
A simple blog post.
I had spent most of that holiday season writing. My kids had gone to Sweden to celebrate the holidays with family and friends and I was too poorly to even care for such things. I wasn’t even too keen on writing at the time, but a promise had been made and I was sticking to it.
Finding Safety in the Spoonieverse
The Wolfmother found a safe space in the Spoonieverse; thus the new platform was born.
To keep myself going, I had signed up for WordPress University’s Daily Post Challenge. The prompt for the day in question said to write about someone who deserves more credit than they get. The choice was as obvious then as it is today and will be tomorrow. There is no one more deserving of praise, and more in need of support, than a young carer.
So many of us have children, or siblings, who had to give up (part of) their childhood to become our carers. The fruit of my womb began like a flock of cygnets, trampling water on and endless sea of misfortune with we. Over time, as my little birds grew, we turned into a tight-knit unit working towards a shared goal. Wolf & Cubs, my youngest named us, and we all agreed they were birdies no more.
We were a pack.
It didn’t bother me too much in the early years. I’m a firm believer in giving children jobs to do and making them indispensable cogs in the family wheel. But as my health kept deteriorating, their work loads grew. And as my ability to work decreased, their financial contributions to our shared den soon turned into our saving grace.
There is so much I need (and want!) to say about young carers and the stark reality of dependency in spoonie families. It is a beautiful thing to behold, that bond that keeps a group of people together against all odds. But it is also a double edged sword. Or a poisoned chalice.
What often starts out as an act of kindness brought on by necessity will, no matter how much love the people involved have for one another, soon turn into something else entirely unless the person in charge pays attention. And the person in charge, has to be the spoonie or someone who understands the spoonie’s needs and can communicate and negotiate on their behalf. Without completely disregarding the needs and wants of the young carer(s).
Spoonies in need of care are, in many ways, like small business owners. Our home is someone else’s work space, and we are responsible for their safety as much as they are responsible for ours. When the carer is employed by an agency, we have a third party we can call in whenever there is a problem or a precarious situation that needs managing. But when the carer is a family member, things are not so simple.
I have many stories to share to shine some light on many different aspects of this, and I will. But for today I will do what I did almost ten years ago. The day when I wrote about how my kids deserved so much more than they were getting, and how I was going to have to find a way of setting them free.
It was this blog post, intended for a different platform, that got me thinking.
What if I had a safe space where I could write, truthfully, about spoonie matters? What if there was a platform on which I could allow myself to “just” be the spoonie? Free to talk about my lived experience without thinking about how my words might affect my carers? Or, indeed, my clients? (I was still intent on returning to work at this point.) Yes, as soon as the thought was formed I knew this was the right way to go. I knew I needed to create the Spoonieverse.
Gratitude Changes (almost) Everything
Gratitude changes almost everything. Our young carers also need support and protection.
It’s been (almost) ten years now since I made the decisin to launch the Spoonieverse blog. I had planned to relaunch the blog on it’s own domain in time for the anniversary, but the coronavirus pandemic made me change my mind. Somehow, it felt wrong for the blog not to be live at a time like this.
I did start the process of liberating my children, but it turned out to be a lot harder (and a million times more difficult) than I had envisioned. There were so many intersections on the way and with each one came a number of new decisions to be made.
One such decision was the major step of taking my life’s worth of writing from every nook and cranny I had squirrelled them into and go pro. To stop writing anonymously, and collate my texts into a number of niche blogs sitting on domains I own and control.
My gratitude towards my children knows no bounds and there is very little I wouldn’t do for them. Perhaps that is why I realised something I had long suspected that night. With searing clarity I saw how I needed to break free from my sense of gratitude, in order to make the right decisions for all of us. I needed to be the Wolfmother again and start to claw back some semblance of independence if I were to save our pack.
To that end, I will continue to move into this space and try to make it a comfortable and safe meeting space for all of us. I can only do so much these days, and I am frustratingly slow so it takes a long time to rebuild the old and develop the new.
Nevertheless, I will carry on adding words to sentences and moving old posts to new shelves. And I will enjoy every moment you can spare to keep me company as I slog on.
Thank you for popping in today! I hope you found something of interest and I’m looking forward to seeing you soon.
Much love and many blessings,
- Maybe I can talk you into writing a guest post or two for the spoonie voices section while you’re here? At the moment I’m afraid I can’t pay for your contribution, but I would be very pleased if you’d consider sharing something you have already written.
- Feel free to come check out my other blogs too. You can find links to the different branches of my blog family tree at the bottom of the column here to the right.
After 25 years of anonymous blogging on a number of free platforms, Evalena 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; living the dream; and how to go 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:
Do you have any young, or family, carer stories to share?
The topic of the day revolves around gratitude and spoonie dependency on family members as carers. Do you have any experiences, positive or negative, to share?
Let’s talk in the comment section below!
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.