TBI survivors work hard. We have to.
TBI survivors toil away, not to get some great monetary reward or a medal, but simply to recapture what we have lost so we can live a fulfilled life. There are no shortcuts and nothing is given to us. Everything we get is earned.
Whether it’s the endless days you spend in physical rehab learning how to walk, the time in cognitive rehab spent learning how to better process the things around you, or the hours you spend writing notes to yourself to help organize your life and keep track of things, life after brain injury is work…hard work.
We are taught that hard work gets us to the places we want to go. Whether that is measured by income, a promotion, a marriage that works, a new boat or a well-balanced family, that’s how things are in our world; the good things need to be earned.
We cannot really measure what survivors earn for all our perseverance and hard work. No, TBI survivors are fighting a frustrating and thankless battle to simply be able to live our lives the way we had become accustomed. The blood, sweat and tears we TBI survivors put in as we fight this battle is all part of an effort to simply get back what we once used to have, and it never ends. There is no finish line or pot of gold. There is no time when we can sit back and say, “I’ve done it and I’m done.”
We are forever in the middle of a battle to live a normal, fulfilled life, and, because the battle never ends, we don’t look at ourselves as being successful, even when great strides have been made.
We are so very hard on ourselves, and this is where things need to change.
This is where a good dose of self-awareness and the acknowledgement of what we have done and what we have earned is needed. Often TBI survivors are unable to see or comprehend what we have gone through or what we have accomplished, partially because we’re always measuring it against “what used to be”. We feel less than human and not deserving of things like friendship, love, success or even just feeling good.
Flip the Switch
TBI survivors have earned the right to be who they are.
That’s right. TBI survivors don’t have to be who they use to be, and they don’t have to fit somebody else’s vision of who they should be, but TBI survivors have paid the price and have earned the right to just be who they are now.
This is difficult for many to hear just because they want so much from their lives, but all of you TBI survivors should know that you are great the way you are, and you shouldn’t feel bad about who you are or beat yourself up for what you’re not. This doesn’t mean that you stop learning and growing, but it’s ok to stop for a second, look at where you’ve come from and be happy about where you are now.
This is where all the survivors out there need to flip the switch; the switch needs to be flipped from beating yourself up and getting down on yourself, to accepting yourself, your situation, and adapting to a new world; because you have earned the right.
TBI survivors have earned the right to be at peace with their situation. Like I said, this doesn’t mean we stop working hard and trying to improve our lives, but it does mean we are accepting of the fact that you can be who you are.
Life may not be the same as it once was but this doesn’t mean we haven’t accomplished something great and important. You need hear that and to let it in that you have earned the right to feel good about yourself and what you have accomplished. You have earned the right to disregard what others say when it is hurtful instead of letting it eat away and bother you. You have earned the right to measure success on your own terms.
You have earned the right to value and respect yourselves.
Restoring Your Humanity
By acknowledging yourself and your accomplishments, by letting in all that success you have had from the hard work you have done, you work to restore your humanity. We can’t forget that, first and foremost, we are all people working through our lives, just as anyone else would, and that just because our circumstances might be different, it doesn’t mean that we are any less deserving.
If other people don’t acknowledge us, we just need to knowledge ourselves.
All of us want to be fulfilled and feel valued. Feeling valued starts with each of us understanding that you have earned the right to be valued for your accomplishments; not for what you weren’t able to do because life threw you a curveball, but for who you have become in the face of great odds.
Victoria Griffin says
Fantastic post. My concussion only lasted four months, and I relate so strongly with this. I am absolutely in awe of people whose symptoms last years or lifetimes. That takes a different sort of strength, and it is a shame that most people will never see how strong they truly are.
Paul W Giunta Jr says
Thank you, Jeff. I NEEDED that article.
I’ve spent the past 10 years getting to where I am today, and I’m HAPPY about ME today.
I’ve also talked myself into SHOPPING feeling resentful to people who criticize me or DON’T understand what I go through every day.
I don’t waste my time TRYING to EXPLAIN it to them, because they could care less.
I APPRECIATES other people who are disabled or handicapped, because I KNOW what they must be going through.
I DON’T appreciate people who criticize me or tell me what I should be doing in my recovery. If they, the MAJORITY of them, have never been disabled or handicapped, I don’t think they have the RIGHT to tell ME what I “should be” doing to get better.
Your article I just read has made this week a SUCCESS for me!
Thanks again, & it was GREAT seeing you last Sunday & meeting your sister.
Danette Rowse says
This is exactly what I needed to hear now. I am constantly beating myself up over why I cannot be the same as I was before. I seriously forget where I came from, and seem to ignore everyone’s amazement at how far I’ve come. Your words of advice are much appreciated!
PS Love your book….
Stuart Phelps says
I read the article through thoroughly, and then read parts of it again.
But its difficult to do. My severe TBI was May 23rd, 2008. For the first several years I felt and said, that “who I was on May 23rd, died that day, and I’m trying to figure out who I am now.
I do get to look back year by year and see that I am doing better. How much better? I can’t quantify.
I lost the vision in my left eye due to trauma to the optic nerve somewhere under my brain. Same accident. That is probably the most frustrating of all. No depth perception, no peripheral vision. So constantly banging my head or stepping front of someone because I didn’t see them. Having to apologize. Being scared half to death and reacting as such when a server comes in on my left side. Whew its a pain!
I also seem to be struggling to recover some sense of “self confidence”. I’m very hard on myself, I do some things oh so very well, and others, it would seem I’m just afraid to start. But when I do start, all seems to go well. So figuring that out is a major stumbling block.
Fortunately I have not been put in the situation of having to respond to people that don’t know what I’ve been through. Perhaps that’s because I’m still struggling to rebuild a social group. But I am prepared, my response would be “tell me if you’re really been hurt in this life”. Because I have, and I’ll bet money you really haven’t. I’ve experienced more than 70 bone fractures including “numerous skull and facial fractures”. I’ve been on a ventilator for more than 8 days. I’ve been in a coma for more than 15 days. I’ve been through months of having absolutely no memory at all. And you want to tell me you’ve been hurt?
I’m sick of the medications. Oxcarbapazine for seizures, Venylfaxine anti-depressant…and all I can see its given me is an incredible case of anorgasmia. I can find nothing on which might be the cause and I wonder if I just quit them, what would happen? Yes, a third of my brain is now just scar tissue, five areas are active for seizures. So what to do? Neurologist says I must take them. Was taking Keppra as the anti-convulsive and boy did that give me anger issues.
Five years post TBI it came to a head, I reached out to 911 for help, got sent to eternal hold…but the Sheriff, the fire department and an ambulance showed up and I went to the hospital for a 72 hour mental health hold. Best thing to happen to me. Staff Psychiatrist changed meds to Oxcarbapazine and much higher dose of Venylfaxine. Life got so much better. Still see a Psychiatrist and I feel everyone must think I’m crazy, but I enjoy the discussions. Not much positive planning, but I feel better after each appt.
Thanks for reading…how do you think I’m doing?
Jeff Sebell says
Stuart, Thanks for reading and responding. You really have a battle on your hands, but it’s clear you’re not going to throw in the towel. All we can ask of ourselves that we keep discovering those things that keep us moving forward and make us human. Although we may not achieve the same levels of success we once thought we would have, we can redefine what success means for each of us and that way live A fulfilled life. To me, the fact that you are learning and growing and asking for help when needed, is a sign that you are being successful.
I’m so sorry for what you’ve been through. We read each others’ stories and compare, and you’ve had a really tough journey. Mine has been tough too, in similar but different ways.. Undiagnosed seizures, so many different drugs, loss of smell, blah, blah, blah. It’s been four years and each year has been better, sometimes in one way,some years in a different way. For me, and probably many of us, stories like this post remind me that we have each other in common as a support system and that’s one silver lining of social media and the Internet –that we can connect without meeting. I hope each year gets better for you and everyone else out there!
Mark Duran says
It’s been quite a year. I’m so much better in terms of pain and coordination, but it’s still all about rehabbing for me. Ironically, the weekend before my accident, I was walking in the forest on a steep deer trail feeling thankful for being able to do that, considering so many of my friends weren’t able to anymore because of age and bad knees etc. A year later, I’m really thankful to be able to a block on a sidewalk without symptoms. During this last year I learned a great deal about patience, letting go and gratitude. Post-traumatic growth works.
Cleo Kojin says
Thank you for this reaffirmation that I forgot was there. I have been so busy trying to get my life back in order that I forget things that I’ve gone through which have led up to this. You have done a great job iterating why we need to be proud of being survivors and not try to forget what happened, like I’m trying to do. It’s a challenge to move forward. You’ve brought up ideas that are true and help me deal with why life is so hard. I have a selective memory so I try not to think of painful things like this.