Empowered & Disabled

The story behind my choice of book title, and what it really means to me.

It’s hard to know exactly when this vision for a book really took shape, but I imagine it’s often that way when we create. I suppose that the seed is planted long before we become conscious of it; by that point it is already rooted inside us and it feels more like a remembering than anything else.

The seed of this book was planted shortly after my diagnosis of Axial Spondyloarthritis, during the period of time that feels lost to me - and probably does to other people for different reasons. Covid had not long become a pandemic, and the world had ground to an uncertain halt. I had been working as a Mother’s Help for nearly 5 years, but my health had been affecting my job for quite a while. I had been given a diagnosis of Fibromyalgia at the end of the year before, but I had the feeling that something else was going on. The family caught Covid quite early on, and unbeknownst to me at the time I wouldn’t end up going back to work for them again. After they had quarantined and lockdown had eased for emergency workers, I was made redundant. Soon after I received the diagnosis that changed the course of my life forever. It all sounds very dramatic now that I write it here, but it was such a shock at the time and so very overwhelming.

That first year was by far the hardest, and losing my job suddenly forced me to face the reality of my health. I’m sure some of you may feel that pang of understanding when I talk about ignoring how bad things had become. It’s human nature to want to be healthy and productive, and to avoid anything that might risk that. My health had deteriorated so slowly and over such a long time, that lots of my symptoms had become completely normal to me, and I really didn’t understand quite how much they were affecting me until I stopped. It very quickly became apparent that I wouldn’t be able to find another job, and with my GP’s support, I started the arduous and dehumanising process of applying for benefits.

It was one thing to be faced with chronic pain and fatigue for the rest of my life, but it was another to be trapped with the emotional and mental toll that it took on me. I felt like my whole world had crumbled, and what was worse was the understanding that things would never ever be the same. To be honest with you, it some ways it made it easier that Covid was happening around me, because it meant that I could focus completely on my health and trying to manage it. However, the difficulty came when the world started opening back up, and life started to go back to normal for everyone except me. Now I was being left behind, and the chasm between me and the able-bodied just kept growing. By November I had also started a new treatment, which pushed me into the ‘Clinically Extremely Vulnerable’ category, and suddenly I had to be super careful not to get ill.

I feel grateful that I had a counsellor that I had been with for many years, and the most supportive family around me, but the unfortunate truth is that we go through a lot of this journey alone. And I suppose that’s the case anyway, if we really think about it, but pain forces you into the present and into your own body, and no-one else can be there with you in that. For such a long time I just couldn’t really do anything. I had previously loved to write, but I no longer had the energy or the mental capacity to connect to my feelings properly. There were many many hours spent staring into space completely numb, and then becoming overwhelmed by emotion that I couldn’t even begin to understand. It was a really lonely and frightening place to be in, and I honestly didn’t think I’d ever get out of it.

It wasn’t until a chance sale (of a doll wig!) connected me to Susannah Conway that things began to shift for me. I had religiously completed her ‘Unravel Your Year’ workbook every single year, but I had never looked into anything else she had written - I’m not sure why. But after we had messaged, I googled her website, and began to follow her properly on social media. ‘Journal Your Life’ appeared, and because she offered scholarships I took the chance and applied. The course started on the 9th of January 2022, and the day before I started to write in a new journal in preparation. I have written every single day since, and because of that the seed that was planted in the loneliest moments early on in my journey has grown roots and begin to form something much more tangible.

Writing has always been part of me and how I communicate and that’s why it was such a challenge when I wasn’t able. As I said in my intro post, Susannah’s course gave me a new freedom in my writing, and allowed me to remove all the expectations I had placed on journaling. Very slowly I began to process all the things that had happened in the last few years, and tentatively got to know myself again. It meant that during this Summer I was able to take part in the most healing of retreats - run by Wild Women Retreats - that gave me a space to face the most challenging aspects of my health surrounded by the support and love of a group of women. At that retreat I had some photos taken by a wonderful friend - the first proper photos of me with my mobility aid - and they made me feel SO empowered.

Photo taken by Rebekah Ranger

I was finally beginning to feel confident and at home in my body. I say that last bit extremely tentatively because, like most things, it is a work in progress. During flares I still find it hard to like myself and my body, but I know I need to work with it and not against it.

I came home from that retreat and journaled probably the most that I have ever in my life. It just poured out of me onto paper, as if I was finally releasing all the things that I’d been bottling up inside for the last couple of years. And on the 11th of August this was my journal entry:

“A book is taking form inside of me. The other night two words popped into my head; EMPOWERED & DISABLED. I had the urge to make an [Instagram] and sure enough it was free. I haven’t done anything with it yet, but it exists and since then things - ideas - have been floating around my head.”

It was so peculiar how quickly it seemed to flow from me after the title appeared seemingly out of nowhere. I saw the book cover in my head, as clear as day. As far as my brain was concerned it already existed in the world - published and everything. There was a strong feeling driving me that I wanted people to feel heard and supported and EMPOWERED in their disabilities. I often see people talking about the importance of not letting their disabilities define them, and to do things in spite of their health challenges, but that never felt right to me. It always felt slightly rooted in shame, as though our disabilities were something that we weren’t allowed to celebrate or even really accept in ourselves. I would love to be able to offer people the skills so that they feel able to integrate their disability with who they were before it, and feel able to thrive, rather than just survive.

I hope you’ve enjoyed reading my post today! It’s been good to finally get this part down in writing, and really see the steps I’ve taken to get to this point. It has reminded me of how much excitement I felt when those words popped into my head and I finally realised that I might actually be able to achieve something more.