Special Guest: Interview with Author and PANS Survivor Madeline Dyer

Today, I’m so excited to introduce all of you to author Madeline Dyer, who has just published a gripping collection of poems, Captive, on her journey through Autoimmune Basal Ganglia Encephalitis, aka PANS.

“I just want to get better

and see the stars

and believe in hope again.”

As someone who has lived with this condition myself for over half my life, I can say that I felt this opening poem, and the pages that follow, on a deep level.  PANS has a way of making the sufferer feel completely hopeless, and this sentiment is one that just about all of us have felt while in the depths of the condition. Admittedly, I’m not a poet and don’t read much poetry, but I was able to get into this book.

As a writer, I can attest to how challenging it is to convey the terror and disorientation that this illness causes. Words rarely seem adequate, yet somehow Madeline has distilled the fear and psychosis into gripping poetry that people who haven’t experienced PANS can understand. At times, it was hard for me to read because I know the feelings she portrays too well, but this book is an important contribution to expressing the reality of the condition.

Moreover, Captive also portrays the obstacles characteristic of being an adult with PANS, such as the dismissal of doctors, the feeling that there’s no one who can help, the frustration of long waits for treatment, and the misunderstandings of friends and family who don’t comprehend how devastating the illness is. I found myself nodding along through these poems, glad that someone else can acknowledge all of this in such an eloquent way.

The repetition of motifs like “Darkness,” “the monster,” and “the birds,” is especially effective at reinforcing the looping nature of OCD (a core symptom of PANS), in which a person will get stuck on disturbing thoughts that happen over and over again.

On the whole, I would definitely recommend Captive to anyone who wants a realistic look into the mind of someone suffering from severe OCD and PANS.

And without further ado, let’s hear from the author herself about the book and her journey writing it while facing this illness:

In a few sentences, what has your journey from onset to diagnosis to treatment been like?

Oh my goodness, it’s been rocky, for sure. Very turbulent. The onset of PANS itself was rapid, literally starting overnight, but it was a further six months before doctors began to entertain the idea that what I had wasn’t a ‘regular’ mental health problem. Indeed—for the first six months it had actually only been the mental health side of my symptoms that were being taken seriously. Doctors had diagnosed me with OCD and just overlooked my double vision and loss of balance, as well as a host of other ‘physical’ symptoms. But when my doctors learned that PANS (brain inflammation that causes neuropsychiatric symptoms) can affect adults too, I was given a 15-week course of antibiotics after a three-day course drastically improved my OCD and loss of balance. It was this clinical change in my symptoms that gave me the diagnosis of PANS. After all, antibiotics don’t typically improve mental illness. My doctors expected that 15 weeks of antibiotics would be enough to treat me, but unfortunately, it wasn’t. My PANS returned within a week of stopping the treatment, at which point I was referred to specialist encephalitis consultants to discuss a more permanent treatment option. This is a very lengthy process, and it is the stage I’m currently still at, having now had various MRI scans and lumbar punctures.

Could you talk a little about the process of writing Captive? What gave you the idea to write and publish these poems?

So, when I was extremely unwell with the brain inflammation caused by PANS, I lost the ability to communicate how I was feeling to others. I was terrified all the time, and everything just felt too difficult. I felt possessed, and when I began to hallucinate as well, it felt like my world was getting smaller. I’ve always been a writer, and while I found I couldn’t work on my usual manuscripts, I began writing down how I was feeling. These writings were therapy writings, and usually took the form of poetry (something I hadn’t really written before). But it was freeing, helped me process how I was feeling, and it made me feel like I was still productive and still a writer (which has always been a huge part of my identity). There was also something ‘safe’ about writing down all these dark thoughts, knowing that this writing was only for my eyes and that no one else would see it.

About eight or nine months into my PANS journey, when I was feeling better, but had the threat of a relapse hanging over me, I decided to read over these therapy writings, particularly as I couldn’t remember the true ‘grittiness’ of my experience of PANS. My brain has blocked a lot of it out, for my own protection. Reading my therapy writings was a shock. A huge shock. But I found that I’d really captured the feelings of utter despair that I’d been living with for so long.

After a while, I shared a few of these poems with a couple of close friends, and they all said that reading my words helped them understand what I’d been going through. During my recovery, I’d already been writing a lot of awareness articles, to both educate others about the condition and also help parents of PANS children potentially understand what their children may be feeling. I think being able to understand the personal side of this illness is important, and so I decided to turn these therapy poems into a collection that would be published with the goal of raising awareness.

You were writing young adult dystopian novels before Captive. What has it been like to tell your own story?

Yes, so I am a dystopian writer! But telling my own story has been so different. It’s been very nerve-wracking, particularly as the writings which Captive originated from were never intended to be read by others. They were my own therapy writings, that I wrote purely for myself, as a way to process what I was going through.

It’s very scary putting this collection out in the world, as it reveals me at my most vulnerable point, and of course, it does invite others to comment on it. I’m extremely nervous about people I know reading this collection, but it’s important to do.

Do you see yourself continuing to write more memoir, or do you prefer writing novels? Or are they simply two different kinds of outlets for you?

So, across my whole journey with PANS, I’ve been keeping a diary—more of a day-to-day diary about the appointments and the symptoms, than a record of my feelings (which is what the poetry is). When I was on the antibiotic treatment for PANS, I decided that I wanted to turn this diary into a full-length memoir, and so I am still working on that. But as my journey with PANS is still ongoing, so is this memoir, and I’m not sure when it will be finished as that very much depends on how my future treatment goes. But that’s my only other solid plan for a memoir. And of course, I will keep writing my fiction, as that’s what I love to do. I’ve actually got a new novel, This Vicious Way, releasing on the 11th February!

How has your illness impacted your writing career? Have you had to adjust your expectations, or do you have enough good days that you can still be productive?

The short answer that this illness has impacted my career a lot. I had to take six months off writing fiction completely, and it felt soul-destroying to do so as writing is very much a part of who I am. (It was during this time I began writing the poetry and awareness articles, as a way to prove that I was still a writer.) But I had to delay the release of my new dystopian novel until February 2020 because I just wasn’t well enough to work on edits for it on the original timeline. This meant I didn’t have a novel release at all in 2019, which I found really disheartening, as I’ve released at least one per year since 2015. But I just knew there was no way I could meet the end of 2019 publication date for that book, given I’d had to take six months off, earlier in the year.

Currently, I’m also doing a lot less writing than I’d have liked to as well. But I’ve found it’s important to recognise my new limitations. Pushing myself is never a good idea.

But I have also noticed something interesting about my fiction writing: I now write much darker stories.

In your book, you manage to portray your severe OCD in visceral descriptions that make it easier for people who haven’t experienced it to understand. How do you cope when your OCD is at its worst like in your book? What do you think has given you the strength to get through such a difficult illness?

Well, how I cope with my severe OCD largely depends on whether I’m on treatment for the underlying brain inflammation at the time. If I am, then the logical part of my brain is working enough that I can then do Exposure and Response Prevention therapy to manage the OCD, and this is the best scenario. But if I’m not on any treatment, well, it’s mainly a question of avoiding my triggers, trying to stay calm, taking over-the-counter medication that can help with the inflammation, and just resting or distracting myself (writing really helps!). This is currently the situation at the moment (I’m not undergoing any treatment now), and I do feel like I’m walking on egg shells in terms of my OCD. The slightest thing can trigger it, but it’s still unpredictable. The other day, I had a surprisingly good day. The inflammation wasn’t too bad, my OCD was minimal, and I managed to do things that the previous day I hadn’t been able to do.

And what do I think has given me the strength to get through this? Well, if you ask me when I’m having a bad episode of inflammation, I’ll tell you I’m not getting through it and that I haven’t got the strength. That feeling is overwhelming and it really scares me, with how real it feels. But writing the poetry collection was one thing that made me realise that even though I am ‘broken’ by this illness, I am also strong. I’m using this illness to raise awareness for it. My family gives me a lot of this strength, and honestly, I don’t know what I’d do without them fighting my corner. My parents have spent months researching it and finding consultants and various treatment options that I can try in the meantime.

Is there anything you know now that you wish you’d known earlier in your journey?

Well, I wish I’d known about PANS sooner so I could’ve avoided those first six months where doctors told me it was just ‘regular OCD’, when in fact my brain inflammation was just getting worse. But I also wish I’d known that it was going to be hard and it was going to affect everyone around me. PANS isn’t an illness that affects one person in isolation. It impacts family and friends and relationships. It is a very difficult illness to manage, there’s no doubt about that.

Thank you, Madeline, for your bravery and honesty in sharing your story with the world! Captive can be purchased on Amazon or Barnes and Noble.  Follow her on Twitter and Facebook.

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