Today I am pleased to welcome back Madeline Dyer to discuss her new book, Captive. This is a collection of poems written while she was experiencing psychosis and OCD due to Autoimmune Basal Ganglia Encephalitis, a rare type of brain inflammation caused by the immune system attacking the brain. Madeline’s previous visit can be found here.
Author: Madeline Dyer
Genre: Biography, poetry
Publisher: Ineja Press
Release Date: 14th Jan 2020
Q and A with Madeline Dyer
Hi Madeline. Welcome back to From Under the Duvet to discuss Captive, your poetry collection. You are best known as an author of YA dystopian novels, is poetry a new form of writing for you or did you do it before your illness?
I wrote a little poetry at university, but it’s predominantly a new form for me, and I didn’t intend to write poetry. The therapy writings that I did when suffering from this illness just happened to take this form when I found I needed a way to process what I was feeling, and I suddenly found myself drawn to poetry in a way that I hadn’t previously been. I began reading a lot of poetry collections—moving away from the novels I normally read—and I just became fascinated by the poem as a form.
As my brain inflammation worsened, I found I couldn’t write prose as I had been. I remember reading one of my manuscripts I’d been working on and thinking how it was like someone else had written it. I felt like a different person, one who didn’t know how to write novels, but I now knew how to write poetry. It really did just come to me, just like that. And I’m so glad it did, because writing poetry allowed me to hold onto my identity as a writer.
Captive is a collection of deeply personal poems about your experience of OCD and psychosis, and I feel privileged to have read them. How did you come to the decision to share them?
It was such a tough decision. On the one hand, these are hugely personal poems, and they make me really vulnerable to others. I’ve had a lot of criticism thrown at me in the last year, to do with my illness, and I wrote these poems with no intention of sharing them and giving others something else to use against me.
But then I did share a couple of the poems with a few friends. I can’t remember why I did, but their responses blew me away. They were so encouraging of me sharing these poems publicly and said it really helped them understand the psychological and psychiatric effects of my illness, and they felt that my poems were important to read.
I then talked with a few other people who also have the same type of brain inflammation that I have about the poems I’d written and how I was toying with the idea of publishing them, and they all thought it was a good idea and would help raise awareness. And that’s the goal with this collection: to raise awareness for neuropsychiatric illnesses, such as PANS and Autoimmune Basal Ganglia Encephalitis, especially when they’re rarely diagnosed and little is known about them.
What has the reaction been to them?
The reactions to my poetry collection have been amazing. People have been so supportive and understanding (a lot more than I expected!), while many early reviews paid particular attention to the haunting qualities many of the poems have. This makes me happy as it’s the haunting effects of the illness that I really want to get across.
Who is your favourite poet?
And your favourite poem?
“Goblin Market” by Christina Rossetti.
Autoimmune Basal Ganglia Encephalitis is a rare condition. How are you feeling now?
I’m still awaiting a long-term treatment option, and I’m still suffering with the ongoing effects of the brain inflammation, both neurological and psychiatric. It’s a lot of waiting around, and that can be very distressing and disheartening at times, but I’m in a better place than I was a year ago. I know what’s going on—even if I haven’t got all the answers right now—and I am able to write fiction again, which is a relief.
Your illness affected your love of reading and books as discussed in your blog here. As a reader and writer that must have been difficult to deal with. How is it now?
I am reading again! Admittedly, I still don’t feel quite as comfortable touching physical books as I used to—the brain inflammation gave me contamination OCD and made me throw out most of my books last year as I thought they were all contaminated. I am slowly acquiring new books though, but I still prefer to read on my e-reader, as it feels ‘cleaner’. I’m not sure whether I’ll ever be a huge paperback fan again, which does make me sad. But at least I’m reading again. That’s the important thing.
What was the first book you read when you could?
Two Can Keep a Secret by Karen M. McManus. It was the first paperback book I touched and read too, during the initial stages of my treatment and the start of recovery.
What is the last book you read?
The Darkest Corners by Kara Thomas. It’s so dark and chilling!
Is there anything you would like people to know about dealing with neuro-psychiatric illness?
That it’s not a choice. Often, people suffering from these illnesses exhibit widely different behaviours, but this is due to our brains being inflamed. We’re not in control of many of our emotions, and it can be difficult for others to understand this and be empathetic.
It’s also a long-term illness in most cases and there’s no quick cure or even any sort of treatment that is guaranteed to be 100% effective. This is a long-term condition, and most of us won’t make a full recovery super quickly. I’ve encountered a few people who seem surprised that I’m “still unwell”, but that’s just the nature of it. It’s been over a year now, and at the moment, I’m at a bit of a standstill as I wait for doctors and specialists to come up with a long-term treatment plan.
Thank you for sharing and good luck with everything.
Madeline Dyer lives in the southwest of England, and holds a BA honours degree in English from the University of Exeter. She has a strong love for anything dystopian, ghostly, or paranormal, and can frequently be found exploring wild places. At least one notebook is known to follow her wherever she goes. Her debut novel, Untamed (Prizm Books, May 2015), examines a world in which anyone who has negative emotions is hunted down, and a culture where addiction is encouraged.