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When Living With a Brain Injury Makes Me Feel Disconnected

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The best way I can explain to someone what it is like to be living with a brain injury and feeling disconnected from life is for me to relate something that happens to me a few times a year.

My Story 

For most of the 41 years since my TBI, I have woken up most every night, spending a certain amount of time, sometimes hours, just lying in bed. Years ago, the time lying in bed was spent worrying about my future and having mini-panic attacks. I have gotten used to this broken sleep pattern and lack of sleep over the years. However, I have never been able to get used to another situation that comes up sometimes.

If I make the mistake of going to bed without putting a light on in an adjacent hallway, I will sometimes have what I think is a unique and scary experience.

During these nights when there is no light, I sometimes wake up and do not know where I am or who I am. Even when my wife is sleeping beside me, I will think I am in the bed by myself. My eyes open, but don’t adjust to the darkness, and I feel as though I am blind or in a deep cave. With no light I am unable to make out what is around me.

The only thing I know is that I am lying in bed.

I sort of feel like I did when I woke up from my coma; one of my first impulses is to get up and figure out what’s going on.

So I stand up, being very careful, but I get confused because I am not sure which direction to go.  I am left feeling my way around, hoping I don’t fall down a set of stairs or walk into a wall because everything is black.

That’s What I Am Talking About

If I took the time to think about my situation, I would probably be terrified. I know I’ve scared other people before when this happened; one time I kicked my daughter’s partially closed bedroom door in, and other times I have screamed out to the dark house.

This disconnection I feel reminds me that I am different from most of the people I know, and this feeling of something being slightly off or being disconnected affects me and other things I do. It’s hard to say exactly how I am affected, but I’m sure it must have repercussions. These repercussions can range from subtle socialization issues to confidence issues, and they always hover over me.

There are many people who don’t feel comfortable in their own skin: many who have been through traumatic incidents in their lives, have fought in wars, or have had emotional experiences overcome them and feel a similar type of disconnection. The question is, how do we adapt to our circumstances and our disconnection so we can live fulfilling lives?

That has been one of  the big questions of my life over the last 41 years. Despite making gains, something is still keeping me from the rest of the world, like a fine cheese cloth or a plexiglass window, and it seems to pop up at the worst times.

Somehow I have to make that work for me instead of against me.

Walking Through Life

Brain injury survivors may walk through life doing one disconnected thing at a time, feeling lost and alone, but wanting to be connected; we want to flow and be part of a whole that makes sense. I think that’s why I am so interested in how things begin; by understanding the origins of something I can understand better how they developed and why they are the way they are.

I love fluidity. I can understand water going over a waterfall and flowing downstream, or one thing leading to another, but I can’t understand things that constantly stop and start, or have no rhyme or reason for their existence. In my life now, I strive to put myself in situations where one thing follows another and everything makes sense.

Given my brain injury, I don’t know if I will ever really feel a part of things. I know I want to, but there is always something to make me feel disconnected. I almost feel like my main purpose in life is to not be disconnected; that if I could just find a way to be part of the world, life would be much better, but it’s complicated. I’m not sure what comes first: feeling connected or being part of the world.

I just keep thinking I will work at both, and in the end I will be whole.

This story originally appeared on TBI Survivor.

Getty image by Ignatiev.

Originally published: April 2, 2018
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