The Syndrome Far More Isolating Than Social Isolation
Would knowing that someone else had this make you think twice about complaining of having a two weeks indoors with TV, books, music and all the social media your eyes can handle?
You think you have it bad? What if someone took away your eyes, ears and mouth? The result is similar to what a sufferer of Usher’s Syndrome would experience — a real condition. How isolating would this be?
These are the words that make some of us shudder. Locked in an apartment or home for fourteen straight days sounds like torture, right?
What if you were told you’d have to live in a silent, dark world for the rest of your life instead? I’m not talking about being lulled into a prolonged sleep stasis or some kind of drug induced stupor for a mere week or two. Instead, this is forever. You’d be awake throughout your new life, healthy, breathing and totally aware of your existence within time and space. You’d be able to reach out and touch things — smell a rolling ocean or taste the sourness of a lemon but not see anything of your friend’s faces or hear the voices of your loved ones. Would this make fourteen days in ISO look small?
You’re fortunate. If you’re able to read this post, you haven’t got to worry about Usher’s Syndrome. You can’t catch it. Michelle Fedgaard (not her real name) was born with this rare genetic condition (yes, a birth defect) and the syndrome then caused significant ‘mental’ issues to develop. It took years for anyone to notice the changes. The symptoms burst out one night through some erratic behavior — and then it took more years to make sense of what’d really happened to her over her young lifetime. After all, how could any of us know what’s going on inside a stranger’s mind? It’s hard enough to get the truth out of someone who has all their senses and intellectual faculties. Breaking into one that has only known silence and isolation would be something quiet different.
Imaginary friends. They were what kept her company.
Yes. This makes perfect sense.
If you can’t have real friends in a real world, why not imagine some in an imaginary one and have a life with them instead? Michelle’s mind grew an entirely alternate universe filled with people and things to keep it enriched with variety-filled content. It nourished her mind with story lines that entertained and delighted but, like life, make-believe didn’t lead to happy-ever-afters all of the time. This world also included an element of conflict. Friends argued. Some split. The rest took sides and a war was waged between the principle characters. It wasn’t until she was in her mid-twenties did her hidden battle come to light. A psychotic episode opened a window. That’s when clinicians leaned in and peered inside it.
One day, in front of a shocked friend (of this world), Michelle had inexplicable spasms. This friend called an ambulance. The hospital staff exposed Michelle’s other reality. With experienced translators at-hand (specialised in touch-based sign language), she was able to reveal her inner-thoughts and feelings to psychiatrists. She said that she was being hunted by evil angels who were determined to kill her. It was a complex story, one with so many players and levels that it was hard to keep track of it all. But her fear and anxiety towards the impending violence was extremely real. She knew what was going to happen to her. The psychiatrists were astonished at the sophisticated other world that’d been created inside her mind. They were perplexed as to how to undo what decades of psychological isolation had created.
In my novel, I’ve incorporated a more detailed account of this real-life story of unique isolation. It was included to draw parallels between someone who feels a sense of isolation without any known barriers and the real isolation felt by those who are confined by tangible walls. The text begins with prisoners who are ordered into solitary confinement but soon switches over to intimate relationships, those people who feel that they are trapped by an overbearing or cold partner.
Marriages can feel confining if the circumstances are right. A husband who tells his wife what to eat, who she can see and what she can wear in public — a wife who constantly checks her husband’s phone log and demands to know his every movement when they’re not together — represent some of these situations. Over time, couples find themselves deeply immersed in uncomfortable relationship scenarios. They are the very same ones they’d tell their closest friends to avoid if they had the chance to do it.
Love promises to set us free but not everyone finds Utopia. Some of us began our journey okay but now we barely manage to make it through the day without wanting to break down. A small crumb of hope is 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? When is it the point of no return? Can change happen and fix a broken heart?
From afar, the answers are easy. When the subject of the discussion does not include us, the solutions to stop the push are many. Communication, counseling, separation, divorce — words that float off our tongues without trouble. But if the discussion includes our name and situation, those words stay stuck in our throats. We’re not so quick to judge. We stop. We wait. We hope. Another day goes by. Another month ticks on. A whole year passes and we’re no closer to a resolution. Our problem grows. We remain silent and alone… and it’s totally isolating.
Social isolation and a worldwide pandemic does not come close to the prolonged isolation that some people experience every day when living with their spouse. Spare a thought for them dear reader for they are the ones who know true isolation. They won’t take to the streets or post vitriol on social media to complain or blame someone else for it. Most just accept their lot in life, quietly cry into their pillow and then get on with things tomorrow.
Or, perhaps, this post that connects with you intimately. Something in it rings true. If that’s the case, then take a long look inside the book. It’s free (for the time being). You’ll probably find the niggling conflict between the central couple uncomfortably familiar. Most likely, you’ll recognise the silent coldness between Samantha and Mitchell and resonate with it. They’re desperately trying to keep things together but the more they try to fix it, the worse it gets. They have the best of intentions at heart but nothing they do works. Something or someone is about to break.
The breakage forms part of the twist towards the end. It’s a dark, dangerous and sexy story. There will be secret affairs, lies and deception. A marriage in a ten-year emotional lockdown will be shaken to its core.
It kinda makes a fourteen day self isolation stint in familiar, safe surroundings look appealing.
–Michael Forman (author)