24/08/2016 10:20 BST | Updated 23/08/2017 06:12 BST

Perpetual Sleep Paralysis

When you hear that someone is paralyzed, what do you think? I bet what pops into your head is that they cannot move their legs, right? It is a common assumption because that is what we are confronted with most of the time in movies and TV-shows. In the real world, real life there is many different kinds of paralysis.


In medical terms, I am a quadriplegic, which means; paralysis caused by illness or injury as a result of a partial or total loss of use of all limbs and torso. My upper brain is in a perfect state, I have not lost of cognitive function. I am completely aware, and I have retained my proprioception and sensation throughout my body. However, my lower brain (brain stem) is so damaged that I cannot send signals from my brain to my muscles to make them move.

Trapped inside my body

My chart reads Locked-in syndrome; LIS is a condition in which the patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for the eyes. The victim is trapped inside her body, similar to sleep paralysis.

I am 95% paralyzed, or at least that is how it is defined in medical terms. I have little voluntary movement. I can stretch my legs out, I can pull my shoulders up (not much just a little), I can bite and chew (all though not with the same strength as before). I can move my neck pretty well (not as smooth as everyone else) and I have facial movements. The one thing I have total control of are my eyes.

Healthy as an ox

Just like my upper brain, my body is in perfect state. In spite of not being able to move, I have a perfect bill of health. I do not have health issues; I do not take any medicine, and it has been years since I had the flu.

The pains that I have; such as pressure sores and frozen joints are all because of the immobility. My skin has become very sensitive to touch. My clothes have to be from soft materials that feel good on the skin. Bed sheets can feel like rough linen. A fly walking on my skin tickles me mercilessly, and that is torture since I cannot scratch it.

Another element I have to deal all the time with is the muscle spasticity. You cannot imagine the strength of your muscles till they start to contract on their own. My muscles stretch out which such force that it hurts. Especially after physical therapy. My muscles ache, shake of tiredness and stretch out all the time.

It may not seem like a big deal to someone who can move, you just stretch out and continue your way. However, it is a different story for someone who cannot move at all. I do not have any control over my body as it stretches out. I cannot keep my balance, and I only sit straight in my wheelchair because of the positioning of my elbows. When these move, my upper body slides sideways putting pressure on my spine and neck as hang out of my chair.

The only thing that I can do is; to make some noise and wait for my husband or assistant to fix my position. It sounds like a nightmare, doesn't it? In many ways it is. There is a term for this kind of dreams;

Sleep paralysis

Sleep paralysis occurs either during falling asleep or awakening. In a state between wakefulness and sleep, the individual temporarily experiences an inability to move, speak, or react. It is often accompanied by terrifying hallucinations to which one is unable to react due to paralysis.

What for most people is only a nightmare that lasts few seconds; is for me a way of life. No half-awake/half-asleep, fully awake. No hallucinations, reality. As a matter of fact, in my case, it is vice versa.

In my dreams I am completely healthy; I can move, I can talk, no reason to panic all is perfect. The nightmare starts when I wake up. Or at least that is how it was for a few years after the stroke. In the morning when I opened my eyes I would greet the day with a howl and cry. It took some years to get over that.

I am still paralyzed, still locked inside myself. Nevertheless, I feel blessed, and I greet every day with a 'thank you to be alive' and 'a smile'.