Of course there have been many things – all kinds of things – I have forgotten at some point since my TBI, but I’m not talking here about everyday things.
I don’t mean it the same way that we TBI survivors have become used to: those memory problems that plague us daily and won’t go away. Forgetting in our daily lives is something we are all familiar with. We forget things that have been said to us, stuff we have done, or things we have to do.
That kind of forgetting is caused by our inability to encode information. This means we are unable to properly retrieve the information we are looking for. Whether we realize it or not, the information we are looking for is there, somewhere in our brains, we just are unable to find it.
I’m talking about a different kind of forgetting. You might say I’m talking about a deeper kind.
Forgetting How to “Be”
What I’m talking about is having forgotten what it was like to be “me”, along with what it is like to be a human being. There are certain things human beings do in their daily lives that makes them human. I seemed to lose my ability to be human after my TBI, and I’ve spent a considerable amount of time over the past forty years trying to get it back.
An example: I forgot how to have fun. I don’t know why it’s so hard for me to have fun. I try to put myself in situations where I should be able to have fun, and while I have an enjoyable time, I can’t really say I have fun. Not the kind of fun where you scream your head off laughing. The kind of fun where you jump off the roller coaster at the end of the ride and you run back around to get in line and go again because you had so much fun.
I have forgotten how to be carefree, with no worries. Life has become a business. Life is a battle to live my life the way I want to and the way I think I should. I feel as if too much of the weight of the world is on my shoulders, or I’m dragging a ball and chain around with me.
I’m always working; trying to improve.
To Be Alive
Sometimes, I think, I have forgotten how to live. I mean really live; with rosy cheeks and out of breath excitement. I’m always a little reserved, as if I do everything half-assed because I’m waiting for the other shoe to drop.
I tend to live as if I’m always looking around the corner, wanting to see what’s ahead of me so I can plan. The need to plan affects my ability to be spontaneous, and I find that I rarely cut loose.
I have forgotten what it’s like to get a good nights sleep, and I think that contributes to everything else. I wake up too much and spend too much time lying in bed, waiting quietly, desperately, for the sun to rise.
Those times, when I’m lying in bed waiting for the sun to rise, are rarely productive, and, if I let them, they can be destructive.
Yes, there are things I have “forgotten”; ways of being that I’m missing from my life. If I dwell on that I’ll make myself more miserable, and will be unhappy that I am unable to be the way I think I should be.
What Has Been Added
This is when I have to look for the good. I have to look for the ways my TBI has added to my life. They may not be easy for me to find, but they are there and I will be a better person when I do find them.
Life after traumatic brain injury is all about learning how to be a better person. We may not be able to function exactly the way we did before our injury, or the way we always envisioned we would, but the way we function does not determine our worth. How we “are” as human beings determines our worth.
I think about what I’ve gained: appreciation, my strength, my purpose, my insight, a new view of the world, how I deal with adversity. Eventually, over time, I have gained a solidness that comes from going through this process, along with a feeling of gratitude for having found my niche. There have been twists and turns, and I had a change some of my definitions and expectations, but life is always changing whether you had a brain injury are not. Adapting to change is fundamental.
Yes, I have forgotten a bunch of stuff but I have learned a ton.
Thanks, Jeff
That was a FANTASTIC read and I was saying “YES” to almost every one of your comments and memories of your recovery
!!!!!!!!!!!!!!!!!!!
So humbling. We go through such difficult times, and periods of stress that take life to another level of hardship. I read your words with such understanding, they fit me, all of us, I am sure.
It just feels so good to read such pieces that make you feel warm inside and can comfort your soul. Thank you, Jeff Sebell.
My heart feels good.
It is totally true, there’s lots more and different things to appreciate than before but sometimes I ache with that desire to let go and run into the surf screaming with joy or push that peddle down to see what she’ll do. I am stuck in that ache right now and can’t seem to find the right solve.
Thank you – thank you – thank You! Thanks so much for taking your time and putting in to words thoughts that I have also had since my aneurysm. I’m so thankful that you write about your experience and feelings. Your writing helps me so much. It’s something that I can add a big “amen” to:)!
I see my husband in this, I even read it to him because I think this is how he feels most of the time. I think so many people dont understand this, and you putting it into words helps so many. Thank you!
Hi Jeff,
It is good to see how I feel put into words.
Thank you
That was a wonderful description for a situation that often feels that there are no words to describe. I will read it again to fully incorporate it into my thoughts.
As its said best, every brain injury is unique because every person is unique……but some of our challenges and experiences seem to be the same, exactly the same. “The kind of fun where you jump off the roller coaster at the end of the ride and you run back around to get in line and go again because you had so much fun.”…..I too have lost this! Thank you for putting into words some of what I have been feeling lately, and over the years since my TBI!!
Hugs from MA!!
I just cant explain how refreshing it is to see that someone else goes through this. I am a mother of a TBI survivor, I am her caretaker. It has been 8 years and although, she is trying so hard to find her new self and accept her limitations…..I fear that she forgets joy. She has the Facebook version of her life which shows her smiling and doing things, but in real life…she is curled up on the couch recuperating for days afterward. She has lost most of her friends, she cant really date because she doesn’t meet anyone, she use to love to work, but now she cant.
You are inspirational to us and I thank you again for putting it out there for everyone to see. You are a brave man.
Today is my 1st anniversary from my 4th and 5th concussions… the twins. I’ve improved bunches and am fortunate to be relatively intact. It was synchronicity finding this article. I’m finally realizing that my life is truly different now, so much less than before. I think what I’m missing most is having an interest. An avid interest in something that a year and a day ago gave my life meaning. Rehabbing and recuperating is the best I can do now and I’m getting worn out by it. Not depressed, just exhausted. It would be so nice to take a vacation from it and just have a nice day. Have something, any one of the things that used to get me jumping out of bed in the morning to accomplish instead of spending the day trying to avoid symptoms.
Yes, I agree with you.
I have forgotten many things in my life like you said, “how to live, to be carefree with no worries, etc”.
I am afraid of what I will see in my life.
I have been crying a lot and I know I cannot cry all the time.
I do something and I see I can do better.
I can aware what I can do or not.
I know I have to get rid of my fear, but it is hard.
I will try again and again even though I see what I cannot.
Thanks a lot.
Thank you! My significant other found this and shared it with me. I am 25 years out from my AVM surgery and I think it helped him understand more. Now we can continue the conversation about how and why I feel and act the way I do.
I appreciate you being open about your TBI. It helps us all!
Thank you for writing this article! I intrinsically knew there is something huge missing from my life since the tbi. It is the joy that came so easily in my life prior to the tbi. Now, I spend a lot of time aline, as my children are all off on their own, I needed to move to an area I really don’t know anyone due to limited finances, and I couldn’t work anymore. These contribute to the loss of joy as well as the bran injury.
So, I am planning to move by family and to a community that I know a few people. I may even volunteer somewhere to find some of the joy I lost since the tbi.
I know the physical damage to the brain is a huge aspect of the shift from joy to the constant need to monitor everything I do during the day. I spend 35% of my day looking for things I misplaced. Practicing meditation to helps balance my brain back to a calm, more focused self. We are busier taking care of ourselves which is frustrating.
Hopefully, we all find intentional moments of joy each day.
I can only say thank you so very much! I was 24 with an art degree, fresh out off college 3.97 to a when I had my first major accident. I’ve been working In healthcare since I was there all throughout college. Currently I do My job pretty darn well, mostly because I believe my brain is firing so rapidly all the time and I am trying to multitask working hospice. When I’m off a group of people together have difficulty covering me yet I’m 46 and I can’t remember every year how to drive to the same beach every time. I constantly struggle with my short term memory. My drawing skills never returned. I’ve had 4 concussions In The last 2 years and I finally feel people understand. I want to print this for my colleges who are so wonderful and educated yet… I’m just getting old and we all forget. I feel everyone’s pain and struggles and I’ve wanted to write a book. I just really want to say thank you so very much for this. I’ve cheated death several times. People are amazed I work but it is me- how I chose to live my life. I’m here for some reason. This week I Will have another surgery and I currently have a stable clot in My right lung and a hole In my heart. This goes above the tbi being discussed so My apologies but my thanks and best wishes to all.
well …. i guess i’m lucky, i feel like i’m happier because i don’t remember every single thing that used to upset me. i did surrender my life to the LORD in july 2015. now i mostly read my bible and pray for people. i like that. my hope is in JESUS.