Whispers That Wont Wait

Mark’s* secret stole his emotion from him when he was four replacing it with indifference. His secret constantly threatens to reveal itself whilst it could also simultaneously end his life.

Keeping it in the dark means never having to explain the pills or the regular tests, nor the web of other secrets that have sprouted from it. He’s spent years avoiding the strange reactions and faded friendships that explaining the secret has caused. “I think people would think differently about me once they knew, and while this isn't true for the few friends … I need a great deal of trust in someone before I want to tell them about what feels like my dark side.”

His secret is the paroxysmal dyskinesias that sporadically takes control of his body. The rare condition unexpectedly consumes his muscles with convulsions or episodes of involuntary movement. It blocks him off from control while creating intense waves of pleasure. “It feels better than an orgasm,” he explains. “It happens whenever I try something new that my body isn’t used to – like swimming. And it can become dangerous because I cannot lift my head above water, but while I’m suffocating the feeling is so amazing that I don’t care if I die,” he smiles.

The medication that works to prevent the life-threatening spasms numbs out his ability to feel emotional changes. It fences him off from the heart-fluttering love that engulfs you in waves of yearning, the nervousness that sends cement to your stomach, or the anger that burns so hot through your bones it could make your skin peel. He spent a majority of his childhood and teen years clinically depressed, never being able to appreciate the balance of moving between different feelings. Instead he is impassive, perhaps as though life were a silent movie played out in grayscale – somewhat enthusing but not as engaging.

In the back of his mind itches the question of who he would be without his secret condition. “One of the side effects of [the medication] is that it can limit your creativity and stunt your intelligence … To think that I might have permanently stunted creativity and intelligence because of the drug due to the condition has a great effect on my identity. I'm hypercritical of myself because I'm trying to push through boundaries both mental and physical that were created outside my control.”

While his disorder is the foundation of his secret, hiding it has sprouted more. “The acting out of emotions is certainly a secret that stems from the condition,” he confesses. His friends don’t know that the emotions he shows are only borrowed and not owned. No one finds a relationship fulfilling with someone who doesn’t receive the same satisfaction, so he learnt to mirror the reactions of those he was with. He laughed when they laughed, listened intently to their news with a façade of interest, and even shed tears on demand. “I was hanging out with the theatrical crowd and I became a brilliant actor. I learnt everything I know from them,” he grimaces. “While I couldn’t feel what the other person was feeling, I learnt to simulate or act out the reaction and the body language I knew they were expecting.”

The specialist who had medicated him for his entire life was diagnosed with cancer when Mark was 15. For the few months before his death he taught Mark how to self medicate. Once he was moderating his own medicine he began to flirt with the idea of experiencing the naturally changing mental states that everyone else had the luxury of. He stopped taking the tablets and the world opened up to something he’d never known before.

“For the three months when I went off my medication the world literally looked more colourful and shiny. You are so lucky to see the world like that.” But he was thrown into the uncontrollable wrath of caring intensely. Feeling the waves of uncensored emotion for the first time became nearly as intense as his now far more frequent convulsions. He was opened up to the multicoloured spectrum of feeling. Crushes became obsessions, disinterest turned to hatred and disappointments became tragedies.

But as the life-threatening episodes continued to snowball he had to return to the medication. “I think that the acting out of emotions was at its worse just after I had to go back onto the medication in 2008. Now I'm stuck in a situation where I'm not sure what's really me and what I might have copied [from the acting]. So I guess it just becomes easier to keep it secret and not think about it.”

* Name has been changed