A Syndrome More Debilitating Than Social Isolation

Humans are social beings. We talk, work and love together. It’s important to have others around us to survive. Past pandemics can have us thinking that social isolation is a thing that, in time, will go away. But there are others who’ll continue to suffer long after a pandemic is over.

Usher’s Syndrome.

It’s a rare condition that imposes forced isolation on an individual due to a number of physical disabilities that, in turn, lead to complex social and mental ones. Their brain is totally intact and capable of great and sophisticated thought but it is limited by lack of stimulation. There are no external inputs with which to nourish the mind. It’s a world of darkness and silence behind the face of an Usher’s Syndrome sufferer — although you’d never know it — and neither would they.

No sight. No hearing. No speech. No communication. Low world awareness. No social bonding. From birth. And that’s only the front end of Usher’s Syndrome that non-sufferers recognise most. It’s far from understanding what cognitive challenges a sufferer faces.

You’re a fortunate individual. If you can see this post, you don’t have Usher’s Syndrome. You have access to words. The screen you’re viewing has conveyed my message to you and you’re aware of it. It’s simple for you and I. We take communication for granted. An Usher’s Syndromer won’t see or hear these words at all. It’s not just because they can’t do Google searches to find them, it’s because they don’t know what Google is. They don’t know the Internet. They may not even know the word search or what it does.

Michelle Fedgaard (a substituted name), was born with this rare genetic condition and is now 34 years old. As you’d expect, the syndrome has caused significant mental issues, but it took years for anyone to notice them or how far the condition had infiltrated her mind. How would anyone know to look? Michelle didn’t know.

The symptoms burst onto the surface one night. She behaved erratically — shaking and twitching violently. And then it took several years for psychologists to make sense of what was happening to her. It’s hard enough to get it out of someone who can speak. Breaking into someone who has only known silence and lifelong isolation is something beyond challenging.

Imaginary friends and foes who were fighting each other in an alternate world. That’s what they discovered going on inside her mind. She was on some kind of survival quest in a fantasy story. The narrative kept her going throughout her life. Unfortunately, the foes got too close to her on that night and she prepared herself to die.

It kind of makes sense.

If you can’t know people in a real world, why not imagine someone in an imaginary one and live a life with them instead? Michelle’s mind grew an entirely alternate universe inside her head. It was filled with people and things to keep her mind enriched with variety-filled content. It nourished her with storylines that entertained and delighted but, like life, make-believe didn’t always lead to happy-ever-afters. This unseen world had developed a darker element too. Friends began to argue. Some split and took sides. A war was waged between the principal characters. An outrageous psychotic episode in Michelle’s twenties finally opened a window between the inside and outside worlds. That’s when her family knew something was going on. It’s when clinicians were called to peer inside to take a look.

What they saw shocked them.

Attackers had come at her with knives. Men on machines tried to run her down. Friends conspired to take her life. She couldn’t trust anyone. Her stories became too much to bear. Decades of psychological isolation had created enemies within herself and there was no way to get them out or away from her.

In my novel, I’ve incorporated a more detailed account of Michelle’s story. It was done to draw a parallel between her example and individuals who find themselves in psychologically abusive marriages. The sense of isolation and loneliness is similar, not to mention the reason-warping. Ongoing internal conflicts alter behaviour and if nothing changes, the psychosis will reach a critical mass.

A husband who tells his wife what to eat and what she can wear — a wife who checks her husband’s phone log and demands to know his every movement — represents some of those abusive situations. If left unchecked, the results can destroy souls.

Love promises to set us free but not everyone finds freedom there. Some of us end up in a living hell. Small crumbs of hope are all we have to keep us going.

The question posed in my novel is: How much emotional, psychological or sexual confinement is enough to push someone over the edge?

My story will make a fourteen-day stint in isolation look tame.

–Michael Forman (author)