The best way I can explain to someone what it is like to be living with a brain injury and feel so disconnected from life, is for me to relate something that happens to me a few times a year.
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. This broken sleep pattern and lack of sleep is something I have gotten used to over the years.
However, there is a situation which comes up that I have never been able to get used to:
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 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 it 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 just get confused because I am not sure which direction to go in. I am left feeling my way around, hoping that 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, yes, I am different from most of the people I know, and this feeling of something being slightly off or being disconnected affects how I am 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 who feel a similar type of disconnection. The question is, how do we adapt to our circumstances and our disconnection so that we can live fulfilling lives?
That has been one of the big questions of my life over the last 41 years. Despite gains I have made there is still something keeping me from the rest of the world, like a fine cheese cloth or a plexiglass window, and whatever that is 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 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 has no rhyme or reason for its 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 that I will work at both and, in the end, I will be whole.
Thanks for reading, Jeff
robin luftig says
My heart broke as I read your story, Jeff. TBI offers a spectrum of afflictions. Not two seem to be the same. But I celebrate you and your determination to focus on being who you are meant to be.
May your path be straight and your footing solid. Thank you, my fellow journeyman, for bringing light to a very dark and confusing condition.
B. Allard says
Once again, “you’ve read my mind”.
Thanks for writing and sharing! You’re inspiring me to write–it just hasn’t “happened”—yet!
That’s it, I feel disconnected and wonder if the rest of my life will be like that. Foggy, blurry, confused and disconnected. I just want to be one and normal again
Cathy Frietsch says
Thank you for your blog. Every story hits me so profoundly and I get strength and motivation to plod through my path and go forward. You are a sharing a gift and giving others courage and the ability to know that whatever level that they may have suffered in the past or future, it’s all great and can be overcome.
Thank you for all you do.
I randomly get lost driving. Just turn my head and Kam clueless. I don’t panic anymore I always have GPS set but I still hate it and others just don’t get it because I don’t panic.
Also sometimes hearing about others issues is good lets you know you are not alone, then I look at how long it’s still going on and that’s the Pitts!
Deborah Rafter says
Jeff, thank you for sharing how important it is for you to leave a light on. June 2017 will mark year 4 after my TBI.3 months ago, I started to live independently again and I always leave a light on, water and medications next to my bedside as well as telephone. Before my brain injury “I never felt connected” in our world. After my brain injury, I feel even more “disconnected” in our world. I find that my psycho-social-biological weaknesses are even more sensitive after the accident, I work at overcoming fear, I struggle over simple tasks, I have lost family and friends since my accident. I have fears of being able to live alone on my meager SSA & at 67, my son encourages me to find work but he can not understand WHO I am now with residual deficients. Jeff you keep the LIGHT ON for all of US, Jeff, you are the LIGHT for people like us, I am sorry you had to suffer so much and yet, Jeff you are the LIGHT. Most LIGHTS’ like lighthouse BEACONS are distant LIGHTS but other people need BIG BRIGHT LIGHTS to show us the way. Keep your light on a night and I will too and thank you for being a BEACON of LIGHT. I woke of this morning feel “way disconnected”, turned to email and immediately saw you had written and I feel SAFER knowing you are LIGHTING the PATH for ALL of US.
Carol Smith-Kilgore says
HI Jeff, Thank you for sharing your insights…you describe a difficult way of being. A dilemma that seems to have no solution. Here’s a thought … is it at all possible to let those disconnects ride, or dismiss them so they don’t interrupt the bigger picture. Maybe the “trick” is to roll with the staccato of life and not search for that smooth sense of relation. I don’t mean to suggest that you or anyone should not reach for a deep understanding or relationship, but rather move your thinking into a broader perspective. It sounds like this connection is a necessity in life that gives one meaning. Not easy by any means. You’re thoughts are so helpful to me as I try to understand my loved one’s life. You are a warrior or the most noble kind. Thank you!
Hi Jeff, wow, thankyou for speaking for so many of us. Even when what we experience is not identical, there is always some of it that overlaps. I too always had the feeling of disconnect, since my brain injury, of something separating me from the world. I feel i cant ‘see’ things in the same way, feel the same connection, even though my sight is perfectly all right. When I was diagnosed with a range of brain/visual issues, with the brain having difficulty interpreting or coping with what it sees in the same way, that really helped.
Carol, I can feel that you are not someone who has experienced brain injury. Non brain-injury solutions such as ‘dismissing’ such feelings, or ‘letting things ride,’ do not work when the person is damaged in the area that does dual tracking and metacognition ie the part that manages thoughts and feelings by ‘putting them aside.’ The same area, a very vulnerable area of the brain that is often damaged, does ‘roll’ with life too. it also allows us to use abstract advice and guidelines and apply them to our lives. if you CANT do any of this in those ways, because you are mechanically damaged, you have to search for a different way. The ways we find that help can seem bizarre to people without brain injury. Its ‘whatever works’ and is helpful for us to hear about. If you understand what ive just said then it should help you in your quest to understand how to help (and not help) your partner.
Jeff Sebell says
Thank you all very much for your wonderful comments.
I wanted to know how you got diagnosed with a TBI? I’ve had scans done but nothing shows and I have multiple cognitive issues and also feel very disconnected.
Jeff Sebell says
Soraya, I guess it was easy to diagnose me. I was in a coma for a month, so it was pretty obvious. I understand many people have difficulties being diagnosed and I guess you just have to find the right doctor. That’s gonna take the time to understand what’s going on with you. Good luck. Jeff.
Jose van Haastrecht says
Thanks for writing
Tonight I tried to explain to my son how lonely I felt now I have retired, with few friends and fewer family. It is 10 years since my tbi and I have attempted to attend hobby classes, but find myself apologising to the group in anticipation of my saying something inappropriate or tactless. I didn’t realise that I was also experiencing a disconnect from life and others. Thank you for some new words for me to use when reflecting.
Marilyn I was so glad to read your comments.I have try’d so many times to do explain this to my daughter. I feel I lost everything when I had my strokes . Feel so alone most of the time yet live in avhouse with 4 other people . I did not ask for this life . I realize this is how I am now and continue to go back too the real me, but how?
Stuart Phelps says
One thing you commented on, that I struggle with. My TBI occurred on May 23rd, 2008. The very first “memory” was Father’s day. The memory is when my VP was leaving and said “Stuart we’re going to take it like a new steam turbine and break it in easy”, or words close to that. That was June 15th.
My very next memory was arguing I wanted to go home. Who was I arguing with? I have no memory. I do remember a Dr. Nupp asking me to demonstrate I could go to the bathroom and shower by myself. I also recall asking Dr. Nupp why couldn’t I have the remote for the TV in my room and why couldn’t I have a diet Pepsi?
My next memory is my wife’s birthday, July 27th. I left the house to get her a birthday card. I remember driving to the grocery store. I remember realizing I didn’t have my wallet. I remember getting back home and not having a house key, and knocking on windows until she rose from bed and let me in.
The rest of the next six months is very spotty. Bits and pieces. But by late August I was getting down to where our retirement home was being built and getting involved to get things done correctly. .
At the end of six months, I went back to work.
I am so jealous of people that remember coming back to life. But yet, I seem to have many fewer impairments than other TBI survivors.
Each year has been an opportunity to look back and see how I struggled the year before.
Here I am writing way too much. An impairment, me thinks.
That was a nice explanation of your feelings.
My son had a devastating TBI about 4 years ago, he was left with a mild aphasia and with no friends/.
Hw had the accident when he was 17, he is now 22. He is studying mobile app development at home through ThreeHouse online certification program.
He seems happy. He has all our support. But I wish he could have friends.
Have a fantastic day.
I too wish my daughter had friends. I had a stroke 6 months ago but my daughter has a neurological condition called Friedreich’s Ataxia. We learned of this when she was 13. She has been slowly losing her abilitiy to walk amoung other things. She recently started at a local community college and seems happy but I wish she had friends as well.
Eileen Hoye Davis says
Thank you for your posting about feeling disconnected after a head injury, it is incredibly wonderful to read that others are having or have had this disconnection experience. Not that I would wish it on anyone-it’s just that validation feels really good, as well as not feeling alone in one’s struggles.
My head injury was 5 years ago and my disconnection is different in that it is a feeling that I am split in two and there is now two of me in my head thinking and wanting to go in two different directions. It’s kind of like my spirit is walking along side of my soul (or ego part of me) and always discussing what is going on in my life around me. It’s weird to say the least and getting “use to it” isn’t the easiest thing. In my prior life (before head injury) I frequently got out of my comfort zone to gain a new experience and new skills. Now, it is scary to be disconnected the way I am. I am a work in progress!
Thanks again for your words of encouragement and the opportunity to have a voice in this difficult life experience.
Again, an excellent story and I am happy (is that the correct word) to find other people who have the same fears and anxieties.
That is the exactly what I feel nearly every day. And it is incredibly difficult to explain my feeling, this disconnection, with colleagues, friends, and even family. I look completely perfect, two good arms, two good legs, ok vision, but, inside my brain there are some broken or missing connections that don’t allow me to enjoy those things I used to do.
Of course, I am recovering. My writing, reading, comprehension, conversations skills are all getting better, slowing but surely, however, this ‘disconnected’ feeling is hard to deal with.
Thanks for sharing your thoughts and ideas. Also, thanks to everyone else for sharing their stories.
Modessa Kennon says
Disconnect Is good word to describe it. My old personality wAs happy go lucky. Okay let’s do whatever. Now I and afraid daily because I don t feel that excitement about life. I just kind of follow others. And I will only let people in my life that I trust now. I have no wants or desires. Just feel complete about something. Anyone else feel this way
when i was in my 20’s i fell and hit my head ,i was unconscious for about 2 hours .ever since then i have for the most part lost most of my emotional connection with people,i also strive for the flow that you were talking about,and when there is a break in it i struggle to grasp why,im in my late forties now and i struggle with friendships and relationships with the opposite sex , and with fundamental basic small talk,before my injury,which i have never been diagnosed ,i never went to get checked.i was well rounded liked communicable and out going ,i do remember that i had 2 black eyes after hitting my head a large knot,and dizzy spells for weeks
It’s 23 years-ish since my brain injury (I cant remember even what year it happened).
I just don’t want to screw up. Still working on it; not sure how that’s going.
Married with 2 kids…..How do you find the confidence to get through a day? Still hoping that not too many important events are getting mislaid….I hate being that bit off, that it is now so noticable t just about eveyone I meet.
Trying to find the way to the light.
I’m sure I’m not alone in this search.
It’s helping me.
It really is.
Jeff Sebell says
Where do we all find the confidence? That is a great question. I don’t know that it’s even confidence. It’s just something we have to do…a job almost. We don’t have a choice. As humans, we need to keep moving forward, trying to find a way. There is no magic. It’s fighting the good fight…as you are. Keep it up.
I’ve only been at this a little over a year and a a 1/2. I did have a few concussions before, but I always recovered. After my last one, I suffered a stroke within the hour of the blow to my head. I didn’t recover from this. This time they didn’t call it a concussion, but a severe traumatic brain injury.
I have to have the light, too. I don’t like it because it interferes with my sleep. If it’s completely dark, I wake up terrified and my eyes don’t adjust. It’s blackness and I have no recollection of where I am. I’ve slept walked to the bathroom for a middle of the night pee (bladder doesn’t want to hold much since the injury), and I’ve woken up, terrified, confused, and crawling around desperately trying to find a wall of a light.
Every morning when I wake up, I don’t know where I am or anything about myself or my life. I lay in bed and try to remember where I am first. I reboot in bed for about 10-15 minutes every morning.
I feel so alone and lost in all of this. Truth is that I am alone in it, and I spend a lot of time lost trying to figure out what I’m doing and why.
It just sucks. I want to thank you for sharing. I thought I was the only one waking up lost in the dark night, stumbling around. Thank you making me feel a little more normal.
I relate to most of what y’all are saying. Sometimes I feel I’ve gone through this much too long and have limited energy left for anything life throws at me from time to time. Yes, I’m thankful I survived, but along with that comes relatives who don’t have a clue. I live out in the middle of nowhere and pray it will work out to move out of state soon! Sorry for the long rant.
Leslie Relle says
I feel the same way you do Esther. Families are the last ones to understand us.
It’s been twenty years since my accident and I have a seizure alert dog since after I was hit by a pickup while walking to work I don’t remember alot of things but I want to have real friends not fake ones
A great read for more insight to TBI. My husband’s accident was three years ago and I don’t think you realize what a new life you will live even after discharge from a hospital. I try to read as much as I can so I can better undead help him. I’m glad to have stumbled upon your site. Thank you and God bless!