Your Greatest Fear (That You Don't Know About)
Let me share with you my greatest fear, which will soon become yours too.
One of my greatest fears is one you’ve likely never heard of. You may not appreciate me introducing this fear into your life, but I promise there’s an important lesson when you make it to the end. The condition itself is frightening enough, but there’s a deeper, less obvious consequence — one that strips away part of what makes us human. That is what’s truly terrifying.
Let me introduce you to locked-in syndrome, a neurological condition where a person is fully conscious and mentally aware but completely paralysed. The only method of communication with the outside world is through eye movement or blinking. The mind is essentially a prisoner inside a body that won’t respond.
Fortunately, it’s extremely rare, but still, the thought gives me absolute chills. One day you’re living a normal life, then the next you’re relying on others to keep you alive, everything from eating through a feeding tube, bathing, and even breathing.
The common causes of locked-in syndrome include strokes, traumatic brain injuries, tumours, neurodegenerative diseases and infections - anything that damages the brainstem, which is responsible for motor movement. This means there aren’t many ways to avoid becoming a victim of this. It’s just down to dumb luck, which, unfortunately, is what a lot of life comes down to.
You go from a fully functional human being to a complete burden on everyone close to you. In the beginning, friends and family feel bad for you, as they should. They visit you, keep you company and updated on their lives. But eventually, they’ll prioritise you less and less. Daily visits turn to weekly, weekly turn to monthly… I fear that if this were to happen to me, people would become sick of me, having to take time out of their day to spend time with someone who is completely emotionless. And the thing is, they would be justified in that. They have lives to live, you can’t blame them for not wanting to spend so much time with you.
Complete recovery from locked-in syndrome is exceptionally rare. Some can make a semi-recovery, but these are outliers, and nonetheless, they will never be the same.
For a bit of optimism before I rip it away from you: my brief research on this subject tells me that most people who have locked-in syndrome, despite their initial shock, lead happy and meaningful lives. They may lose their will to live initially, but once they can communicate, their quality of life increases dramatically, with some reporting a surprisingly high quality of life
Screaming into the void
All of this is beyond awful, and I can’t begin to imagine what it would be like to be in that situation. There’s one other thing I haven’t mentioned yet, which may not be immediately evident. Yes, it’s upsetting these people cannot live normal lives, the ability to walk, dance or play video games being ripped away from them in an instant, but I feel the biggest tragedy, the thing that was stolen without warning is the very thing which makes us human: the ability to express emotion.
Frustration, fear, anger, sadness - you can’t let this out when confined to your mind. You need some physical, external outlet to help, but with locked-in syndrome, you lose emotional expression through the body. It can be cathartic to cry in grief or shout in anger. You feel physically better after letting emotions out. But with locked-in syndrome, even a simple sigh in frustration is forever out of reach. Your emotions are trapped inside of you, invisible to the outside world, leaving you with more misunderstood feelings.
This would be enough to drive anyone insane, right?
Anyway, luckily, there’s nothing worse. Well… actually… There is. How about being trapped in purgatory?
There’s Something Worse?
Let me introduce you to locked-in syndrome’s big, scary brother, total locked-in syndrome.
This is when you can’t move anything at all, even your eyes. You’re fully conscious inside, you can hear, feel and think, but you have no way to show it. It’s a one-way mirror; no matter how much you bang on those walls, there’s no way for someone on the other side to know you exist.
With locked-in syndrome, visitors know you're there — that you're listening — their words and visits have purpose. You’re able to express your emotions, slowly, through words and communicate how you’re feeling. But with total locked-in syndrome, you don’t even have that. Your social life falls to zero. There’d be little reason to spend time with you. After all, they think no one is there.
Little do they know.
Martin Pistorius fell into a coma at age 12 and was diagnosed as being in a vegetative state. When he was around 14, he became conscious. However, people continued to believe he was in a coma for over a decade. He became conscious of the world around him, but the world did not return the favour. During this time he was abused, verbally, physically and sexually - completely aware of what was happening to him, but unable to fight back. Miraculously, his caregiver noticed subtle signs that he may be conscious, and from there, he was treated as a locked-in patient, and even more miraculously, he regained his upper body functions.
I can’t find the words to express what it might have been like, so I’ll let him do it. Here is an excerpt from his memoir Ghost Boy:
"I was trapped in my own body, a silent observer of everything around me. I could hear everything, I could feel everything, but I couldn’t react. I could see people come and go, their faces filled with pity or hope, not knowing that I was still in there. I wanted to scream, to tell them that I was still alive inside, but I couldn’t. I couldn’t move. I couldn’t speak. I was a prisoner in my own mind, and the world moved on without me."
Imagine you were fully locked-in and had no way to communicate with the outside world, how torturous would it be to have someone looking directly at you and be unable to tell them: “I’m here! I can see you!!”. You’re screaming this in your mind, meanwhile, they receive nothing but a vacant stare. Worse yet, you don’t know how long this will last. You could be there for months, years even, with only a few opportunities to communicate that you’re there. From the caregivers’ point of view, you’re in a coma, so why would they suddenly think that you’ve regained consciousness?
It was a difficult task writing this. I’ve known about this condition for a while, and it’s always been unsettling thinking about it. But reading these stories of people unable to communicate, completely trapped in their minds, then overcoming that and leading a meaningful life brought tears to my eyes multiple times. The ability to express emotion is something we should never take for granted. I cried a few times while writing this, however, I am glad that I am at least able to do so.