Dear TBI,
I know you’re not a person, you’re my stupid brain injury, but it’s about time we had a talk. You have no idea what it’s like to live with you, and to always get messed up by you.
The first thing I’m doing, is I’m giving you a name. I’m going to call you “The Joker” from now on. You know like Batman and “The Joker”? You’re evil and diabolical, and you’ve always got this stupid grin on your face.
That name gives you an idea of what I think of you.
Well, Joker, even though another year has passed, I still have, pretty much, the same questions for you, and I’m a little nervous to ask them because when I look at the way you act towards me, I think you probably won’t answer, or even acknowledge me, and that will piss me off. I’m also nervous about what The Joker will do if I anger him.
However, at this point, there are things I want to know, and I just don’t care if you get angry. This is a New Year and a new time.
Here we go:
You and me, we’re inseparable, almost like we have grown up together, although this is something I have not had a choice in. I have been learning about you, trying to get to a place where we can live peacefully in the same body. I see now, though, that it’s a one-way street, because even though I’m desperately trying to learn about you, and to figure out my place in the world, I don’t think you’re trying to learn about me. I don’t think you care about me.
Being inseparable, like Siamese twins, we have a funny relationship. I don’t know if I would go so far as to say it’s a love/hate relationship. I do know there is a lot of anger there on my part, but I’m not sure about the love. Plus, I can only assume you hate me by the way you treat me.
A lot of my time is spent asking,”Can’t we just get along?”
How come you have made me change so much from the way I used to be? How come you’ve made it impossibly hard to live my life the way I knew it? Why have you caused so many problems between myself and my family, and taken away all my friends?
I don’t know. Sometimes I just want to kill you, the TBI part of me, and make you go away. Yes, that’s right. That’s what I said. Deal with it. It’s about time you had to deal with something you didn’t like, and we did something on my terms.
Don’t give me that baloney about you being a part of me. I don’t want to hear it. If you’re part of me, like you say, why are you so destructive? Why are you making my life so difficult?
That’s why I can’t kill you, because if I killed you it would be killing me, and I’m not going to let you win.
I’m going to be strong, and I’m going to fight you and anyone else I have to fight so that I get back at least part of the life I used to know.
Don’t smile like that at me, Joker. You disgust me. This is not funny. I’m not here to entertain you and be a play-toy for you.
Why do you mess with me so much? I know you like when I get angry at you because when I get angry, I lose control. When I lose control I feel worse about myself, and that makes it even harder to focus on where I need to be. You just make me so angry. You make me feel so hopeless.
Hmmmmm. Wait. I see now what’s happening. I’m stating to understand your game. That’s where you get your power. The angrier I get, and the more hopeless I am, the more powerful you become. It’s like I’m just handing you the power because my anger helps you take over and destroy the old me. I am helping you be more powerful. Damn!
What if I refuse to get angry at you?
What if I learn how to coexist with you, and not let you be a problem in my life; just something I have to deal with on a daily basis.
Joker, I am through making you powerful by being angry. I am through making you important by saying everything that happens is because of you. I am through treating you as though you have control over me, when it is really me that has control over me.
Joker, I hereby change your name. I’m through calling you by some special, meaningful name, and I’m just going to call you Fred, or John or Mike or Jane. That’s what I’ll do. How about John Doe? I’m going to call you John Doe. You are faceless. You are anyone.
You are not special and I am not your toy.
I am free of you, because I choose to be. Oh, you will still have an impact on me, a major impact, but I will not dwell on you, or get angry and I will try not to feel hopeless.
I am going to take back my life by making myself responsible for it. This will be hard. Sure, I will mess up, I may get depressed and angry at times, but I am going to say today, right now, that I am the one who controls my life and not you, Mr. John Doe.
In the end, I run my own life. I will not let my TBI control it.
You have affected my life greatly, and will continue to affect it, but you do not own my life. I own it.
As the owner of my life, I state that I am in control; in control of the good and the bad, and I take responsibility for both. I’m not blaming you anymore. I am going to fight you by learning how to be a human being, a human like any other who can do some things well and other things not so well, and who acknowledges he is human.
This is hard to say, John Doe, but we are going to be buddies. You and me. Buddies. You are part of me, and I am gong to use you to be a better person, because I know that I can learn how to be a better person so that my life is more fulfilling. I can give back to others and be that person who is proud of the way I live my life and what I stand for.
So, Mr. John Doe, you can sit there grinning and being nasty, but it’s not going to bother me. My life is not about what I can and can’t do, or what I do well or don’t do well. My life is not about this thing that happened or that thing that happened. I see now that my life is a big, landscape painting that tells a story about what kind of a human being I am and how I choose live my life.
You’ve taught me a great thing, John Doe. Thank you for that.
David Karchem says
I think the comment about how high any obstacle may appear is appropos, and Jonathan Kellerman stated it very succintly.
*Each step is small, even though it may appear very high.*
*’To everyone else, I look okay, everyone keeps telling me “I look “better.”
I’m not okay. It’s like one of those android movies. I’m not me anymore.
I’m still in the box I came in, but someone’s f***ing with the wiring inside.’”
* *Jonathan Kellerman, Therapy, 2004*
I enjoy reading you blog. I’ve referred a few friends and acquaintances to it.
** David Karchem**
dkarchem@gmail.com primary
david.karchem.82@my.csun.edu CSUN
http://dkrehab.blogspot.com blog
818-730-8756 cell *
Jeff Sebell says
Thanks very much, David. For the nice words and for Jonathon Kellerman’s words too.
Ric Johnson says
Excellent blog Jeff, thanks for writing another blog that all survivors understand.
Jerry Donovan says
Very well put I think Iwill use this in my life, who know’s it may make difference. thanks for taking the time
Annemieke says
Impressive blog! I have found that contacts with fellow brain injury patients helps a lot in dealing with the sometimes harsh reality. I had to reinvent myself, and still am, every day.
Wishing you good energy, one day at a time.
Jeff Sebell says
Thank you. Wishing you well too.
Barbara Stahura says
Excellent post, Jeff. It feels that you really captured the relationship a lot of people have with their brain injuries. In my journaling groups for people with brain injury, I often ask them to write a letter to their brains. As you discovered, it can be a powerful and enlightening exercise.
Jeff Sebell says
Thanks, Barbara
John Lunde says
I think Jonathan Kellerman hit the nail in the wood successfully. I have had the experience of not only one brain aneurysm but two.
I am constantly thinking of how long the process to heal the body because of 2 crainiotomies, a stroke, collapse of left lung, pulmonary embolism, DVTs in my legs, and so much more.
I have to learn to relax and become friends with these “friends.” I have what is known as Ehlars-Danlos (connective tissue disorder). And I’ll probably have another one.
My rehab times are getting longer as I age. But I don’t know if I should call him by a name. My dealings with this TBI is ongoing.
Jonathan Kellerman smacks it very well. Don’t get angry! That’s why I haven’t given in to them or even thought about performing a suicide. I have too much to live for. I have a son that I want to teach. Hopefully, get back to getting married again and sharing my life.
Just when you think you’ve seen it all – you realize you have only the top of the iceberg. You don’t know how much more remains under the surface. You have to take as it comes and believe in 3 important things:
1. You have to believe in yourself.
2. You have to believe in your neurosurgeon.
3. But the most important of all, believe in God. You have to askHim if He really wants you.
That’s why I didn’t have my last rights read to me. I made the priest/father say a prayer that I would come out of each surgery.
These were all in to my keys to recover and recooperate. Without these 3, it would be extremely tough.
I welcome other TBI survivors/candidates of becoming one, to talk about my experience and theirs as well.
If you want to bend my ear, I’ll be listening whether it’s good or bad. It’s kind of nice when you have someone to talk to about TBIs.
I wish all of you well. You have to believe in all 3 before you have anything done. That is my key(s) to rehab and recovery!
Debbie says
Your blog is pretty *darn good Jeff.
*Today I will not swear.
Today I will fight to be the best “me” I can be.
Today I AM going to be “friends” (ugh) with my ABI/TBI …
this is so hard…
Okay- uhem..
Today I will live my life to the fullest!
Today I will not let it control me or my thoughts!
Today I will Not be Angry Or go the other way & cry because of ……….”you – mr.BrainInjury” (Only swear names come to mind Jeff… I guess I’m not ready to “name” it) 🙁
Although I say these things every day when I wake… it’s so hard to keep that mentality.
Thanks for your words though… they are helpful.
I will be reading this more than once that’s for sure! Peace
Deb
Jeff Sebell says
Thanks for the nice words, Deb, and for fighting the battle, every day.