Turned On, Turned Off, Turned Around ~ Outside the Margins with Posy Roberts

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I made a very hard decision yesterday, and I hope it doesn’t affect my writing.

July 9, 2015, I went under the knife. It was a quick procedure to implant a battery pack in my chest wall and then cut into my neck and wrap a wire lead around my vagus nerve. Surgery went well. I healed for several weeks, and at the end of August, I went back to my doctor for them to turn on the device.

The Vagal Nerve Stimulator (VNS) was implanted to help me control my seizures. I’ve had seizures the majority of my life with only a few years reprieve here and there. For most of my life I’ve experienced things differently than people around me, and after discovering where my seizures originated, it became clear that those odd phenomena were probably caused by my epileptic brain.

I have premonitory déjà vu, which is not usual at all. I experience already living through something and then minutes, hours, or weeks later it happens just as it had when I experienced déjà vu. Sometimes that sensation brings on a seizure. Sometimes seeing it happen later on causes them.

I’m highly empathetic, rarely forget a face (names I forget all the time), and can place faces with locations of where we first met in an instant. I’ve had fits of writing inspiration come out of nowhere and demand attention. As soon as I have words down on the page, I collapse in exhaustion. My North Star trilogy was one of those. I wrote 326,000 words (3 novels) in about 65 days. I have another 300K+ story out there that took me over a year to write, to put that into perspective. Now, if only I could channel that…. 😉


My epilepsy has been a gift and a curse.

The part of my brain affected is where my language, emotion, and visual perception centers are, and without epilepsy, I’m not sure I would be a writer. Sadly, the meds that worked needed to be increased over the years, eventually turning me into an emotional zombie. They turned off my creativity. They also didn’t completely stop the seizures. So when I learned about the VNS as a possibility, I jumped on it.

After my doctor turned it on last August and then upped the intensity and duration with each visit, the VNS came at a cost, namely, my breathing. Since February, the device activated every .8 minutes and stayed on for 7 seconds. When it activated, the battery pack implanted in my chest sent electrical currents up my vagus nerve, which controls the autonomic system (breathing, pulse, heart rate) as well as tripping any seizure-related weirdness so potential seizure activity would be interrupted.

It’s worked for me. It’s worked very well. Since February, I’ve had 2 seizures, and both times can be related back to very poor sleep. My doctor and I finally found the therapeutic rate of stimulation. But I’ve struggled breathing since they turned it on. I lived with it, because what was the alternative? I used my asthma inhaler like a poorly written fictional character in movies… but my seizures were being controlled. It was a tradeoff. The hardest part was how I stopped breathing in my sleep and the coughing fits that got so bad I couldn’t stop.

Enter allergy season. As an asthmatic who already struggles in the summer, life is a challenge. Add a VNS that narrows my airway every time it activates, and it was a recipe for disaster.

I’ve barely exercised since the VNS placement due to the breathing problems every .8 seconds, so I’ve gained weight. My husband wears earplugs at night so he can sleep through my snoring and humming. Yes, I hum in my sleep when it goes off. Don’t ask! Ugh. I go through inhalers like smokers went through cartons of cigarettes in the 1950s, and I can’t do one of my favorite things in the entire world: sing. I sound like Chewbacca when it goes off or Chewbacca suffering from emphysema. My voice and breathing are so affected that people I’ve talked to on the phone ask me if I’m going to be okay. They tell me to slow down, take a moment, ask if I need a drink.

Yesterday I went in to talk to my neurologist, to see if there was anything we could do to make my breaths come easier. The intensity was turned down. I still struggled. It was turned down again. Still, I wheezed.

We turned it off.

I’m going to keep my VNS off for now. I’m increasing my meds again. I’m scared, but already I’m breathing easier. If I didn’t need to drive, I’d stop all therapies, but right now that’s not an option.

There are times we have to admit defeat. I’m never one to give up easily. If you’ve read any of my books, you know I write about survivors. I’ve been fighting this, telling myself that I could handle not breathing if my seizures were controlled. Apparently, I had one too many coughing fits and needed ten too many puffs from my inhaler. So I took the plunge and did something I never wanted to do.

I’m not going to stop fighting, and if I need to channel Hudson and Jude from Naked Organics or Hugo and Kevin from North Star or Gil and Keith from Silver Scars, I will. They struggled through so much worse than I have.

Besides, I have a hell of a lot more stories to tell!

~Posy Roberts


Title: Picked Fresh
Author: Posy Roberts
Publisher: Labyrinth Bound Press
Publication Date: 06/23/2016
Cover Artist: Natasha Snow
Genre: Contemporary, Fiction, Gay, Gay Romance


Is five thousand miles far enough to say I love you?

Hudson Oliva loves stability. He was a throwaway teen before finding Kaleidoscope Gardens but has since thrived at the commune. When Jude Garrity moves in, life gets even better, but Hudson still craves more. He knows he has to be satisfied with their exclusive status being temporary and that Jude will eventually navigate his full sexual awakening with their other housemates.

Hudson has a journey of his own to make. It might only require going home to settle his grandmother’s estate, but he plans to use his time away to figure out how to temper his feelings for Jude and bury his jealousy once and for all. But when Jude joins him on his trip, Hudson falls even deeper in love, especially after Jude stands by his side when he finally confronts his mother for rejecting him.

However, it’s not all hearts and flowers while they travel. They’re over two thousand miles from home when Hudson learns a ruthless corporate farm threatens the commune they both love. In order to save their way of life, Hudson must ask his mother for help. And if he wants a chance at a stable future with Jude, he has to tell him the truth about his feelings, no matter if it ruins the harmony he’s tried so hard to preserve.


Picked Fresh on Goodreads

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About Posy Roberts

Posy Roberts writes about romantic male love. Whether her characters are family men, drag queens, or lonely men searching for connections, they all find a home in her stories.

Posy is married to a man who makes sure she doesn’t forget to eat or sleep; her daughter, a budding author and dedicated Whovian, helps her come up with character names. When Posy’s not writing, she enjoys crafting, hiking, and singing spontaneously about the mundane, just to make normal seem more interesting.

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4 thoughts on “Turned On, Turned Off, Turned Around ~ Outside the Margins with Posy Roberts

  1. What an impossible decision to have to make. Nothing is as frustrating as when the treatment you need just to keep going is also the thing causing you damage and/or new problems. I know. But, I’ve also learned that nobody knows my body as well as I do, just as only you know exactly what it’s like to live in yours. Therefore only you can decide what you can and can’t live with. I hope your decision works out well for you and fervently wish your creativity won’t suffer. The world without your words would be a poorer place indeed <3

    • There are side effects with everything. I’ve certainly learned that with all the chronic illnesses I have, but yeah, I do know my body better than anyone. I wish doctors realized that. LOL. I hope to get my asthma under control so I can get this thing turned back on again.

      And <3 you for your very last sentence. <3 <3 <3

  2. I don’t have a chronic health condition but my daughter does so I can give you my sympathy and hope it brings peace… if only briefly. Enjoy the moments when you are pain, or symptom free. You deserve them.

    • That was what finally made me go in. I was looking at living this way for the rest of my life. That wasn’t going to happen. I knew I had to do something, and when they saw how I struggled to breathe, the doctors were shocked I’d endured it as long as I had.

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