Caught Between Two Worlds

Caught Between Two Worlds

It’s time for a deep and personal confession. As my life as a brain injury survivor continues to move forward at light-speed, I marvel at how different each chapter is from the one before it.

Long ago, I gave up trying to predict what my future would look like. The reality that I live today, in my eighth survivor year, is not even close to what I had envisioned early on.

My first few years sucked big time. Sure, I could clean it up a bit and share that those years were difficult. I could extoll the discomfort in all things that come along with early recovery after a brain injury. I could use words to paint a flowery and colorful picture of those early years.

But to what end? The reality of my life immediately following my injury can be summed up in two simple words – it sucked.

For several years, various doctors, neurologists, and neuropsychologists took wild guesses to predict my outcome. The reality is that none of them had a clue.

“You’ll be back to normal in twelve to eighteen months.”

“Once you hit the five-year point, you’ll be back to where you were before your accident.”

“You are permanently disabled.”

“Now that you have hit the one-year mark, your recovery is essentially over.”

And perhaps the cruelest comment of all, “I can fix you!”

Shared innumerable times before, I hold no ill will, malice, nor resentment against these professionals. Each was doing the best they could at the time. If anything, I was learning, one predicted outcome at a time, how little the medical community still knows about brain injury recovery and about the timelines of recovery.

Interestingly enough, I was spoon-fed more meaningful information from those within the brain injury community. I was told that my recovery was lifelong, something I inwardly laughed at. I was told that time was my friend, something that has proven to be true for me.

More importantly, “brain injury old-timers” told me that I would eventually find my way. Guess what? They were right. I am finding my way.

So what is this deep and personal confession I mentioned early on?

Much to my surprise, as my path of recovery continues to move forward, I have been consumed by guilt. In what amounts to a bit of irony, I’m experiencing survivor guilt.

Last year was my breakthrough year. With my seventh year came the vestiges of normalcy as I began to sleep through the night and resume full-time work. As my clarity returned, and I looked around to those close to me, I realized that my recovery was continuing and that I was indeed fortunate.

And the guilt set in.

I do not like to say, “I am working again,” in the presence of other survivors. In many cases, it makes me feel different, very much like admitting my brain injury in the presence of the uninjured. That makes me feel different as well. In many respects, I feel caught between two worlds.

Life is funny. For the first several years after my brain injury, I wrestled with “why me?” questions that many of us try to come to grips with. Why was I struck down in the prime of my life? Why did I have the bad luck to be rendered disabled while all of my close friends lived normal, un-brain-damaged lives?

Why me?

And now the “why me’s” have come back with full force. Recently, Sarah and I saw a segment on television about a cyclist who was struck by a car. If this sounds remotely familiar, it should. I was also a cyclist struck by a car. The spot went on to show him left partially paralyzed, struggling to rebuild his life with his newfound challenges. Again, the guilt came roaring in like a freight train. I can walk unaided.

Years ago, I could only dream of a life that resembled something normal. In my mind’s eye, I would rejoice and dance an endless happy dance. Never could I have envisioned the angst that has come along with this chapter of my life.

My brain injury is an integral part of who I am today. I will have challenges for as long as I have a heartbeat, though those challenges no longer rule my life. However, I am still searching for a way to be at peace with all that has happened, a sense of peace that I know will eventually find me.

I need to learn to live with the questions, the uncertainty, and the guilt.

At least for now.

Comments (7)

Thank you for posting this. I'm struggling with the thought of never being the old me. My doctor tells me I'm lucky to be alive and I need to start fresh. Get my mind in a happy place. The part of the brain I injured has a lot to do with emotions. I never in my 55 years prior to this injury ever showed emotion. I actually thought I was being a big sissy. But reading some of these experiences I finally don't feel alone and helpless. I'm also learning I have to be happy today, not worry about what I couldn't accomplish yesterday and look forward to small steps tomorrow. Its almost been a year since I got rear ended on my Harley, and been pretty much depressed since. But reading these experiences on this site, made my day. I will never be the old me, but now thinking about it, do I really have to? Maybe the new me can be happy.

Every once and awhile I go back to the internet seeking new information and or validation about my TBI now in its 10th year. Much of what you shared sounds like my own experience especially the moments of clarity the numerous expectations, losses , interventions. Especially realizing that the professionals albeit well meaning often times knew nothing and the patients did. I AM 68 now and it's important that I know as much as possible so as to make the future the best it can be and
Yes although I am experiencing many great things , there is still much to deal with... it's good to know this because I was feeling so good that I thought I was rid of everything , sadly no but that's ok , knowing and understanding is power and healing in of itself. Thank you for helping

Wow... I could not agree with you more David. With a new book out, most think I'm back to 'normal' ---whatever that means. I'll never be normal. Like you, I only strive to be at peace. One day.... One day...

I am so glad I came across this blog for my husband (65 year old) who suffered a brain injury (during hospitalization). I know we both need to gain an understanding of the challenges facing us and reading these stories is so helpful. Thank you!

Very nice blog. I to am a brain injury survivor going on my eighth year. Like you I suffered what I presume your doctor's called a "mild TBI". Which on the surface sounds great and you'll be able to be back to yourself in no time. Not the case. Just like you I memory, mood, word finding, and the list goes on and on.
I too was able to come to terms with my injury and build my "new life" rather than "new normal". Accepting the changes that our TBI has dealt us is by far the hardest endeavour any of us will have to undergo. Unfortunately, we have no choice.

Make yourself great or let yourself be defeated.

Yes, it is part of your story now - the you who was before has gone so learn to accept and love this new person. I am almost 20 years on and life is different but happy, although I know that some people are still waiting for me to 'snap out of it' We can't and shouldn't. Once you get from the 'why me?' to the 'why not me?' you know you are on the mend. It is all part of the healing and grief which will follow every brain injury and each case is different- there are no wrongs and rights with BI - just heal in the way you want. Music - always music - has helped me

A sense of peace. Yes, that is the quest. My injury is 14+ years, and I'm pretty much in peace. I can't boast about tomorrow but because it wasn't happened. I can only believe that yesterday happened because of me, regardless of the outcome. Questions can come & go. Uncertainty is a drug, and have to dig through it by letting my thinking overcome it. Quilt? Only that my family had to go though my injury as well. To heal that, I love my family more then I did before my injury, and thanking them that they stayed with me. Each person and their injury is different then mine, so survivor quilt is gone, gone, gone. But because of that quilt, I now advocate for every other survivor; a facilitator for a support group; a speaker for my state's brain injury association. Everything you do is a powerful success story and give new survivors a reason to believe.