
In hindsight, it’s probably best that we didn’t know what was coming. No one really wants to know that life is about to become difficult — very difficult.
It took several months for the severity of my own TBI to become clear. Early on, well-respected doctors — doctors doing the best they could in this strange and so often unpredictable land of traumatic brain injury — predicted a complete recovery.
A few weeks after my cycling crash, one of my first neurologists shared that I “would be back to 100 percent within a few short months.” Always one to rise to a challenge, this time-frame didn't bother me a bit.
As time marched forward, his timeline for my complete recovery changed a bit. Months passed and I still had significant “issues.” He upped the ante a bit and let me know it might be three years, but certainly no longer than five years, until I fully recovered. I would be completely normal again.
Looking back with the benefit of time, I see now that the good doctor really was doing the best he could. I have no room for lingering resentment or animosity as these are barriers to forward progress. Life can be challenging enough.
There really was such innocence during that first year after my injury. Sarah and I thought we were just biding time, waiting for life to return to normal. Life did return to normal, but it’s the new TBI normal. We’ll circle back to that later.
There was so much we just didn’t know during year one post-injury. I find myself unexpectedly grateful for what we didn’t know.
We didn’t know that even now, well into year four, those PTSD nightmares would still haunt me. We didn't know that there really is no end game in brain injury recovery. We didn’t know about the friends we would lose, the financial hardships that were coming, that life as we knew it was coming to a close.
Nine months after my crash, Sarah and I traveled to the Florida Keys. We were still living in the “Age of Innocence” as we were both expecting me to recover fully. A week in the balmy tropics seemed like a near-perfect way to help speed along my recovery. We basked under a mid-summer’s sun, hopped from tropical beach to tropical beach, did lots of hand holding and figured we were still on the right track as my recovery continued.
Had we known what was barreling toward us at light speed, our trip would have been filled with dread and fear. Precious memories would never have been made.
More than three years have passed since our first trip to the Keys. This past summer found us back in the Keys again, a bit older and a whole lot wiser.
We have both learned so much along the way. The most meaningful life lessons come from living through what life puts on your plate. No longer do Sarah or I pay much attention to predictions. Trying to predict brain injury recovery is like trying to put a saddle on a cat. You can try really hard, but in the end, it becomes nothing more than a lesson in frustration.
More importantly, living life “in the moment” has become one of the biggest forward moving steps we have taken. The past cannot be changed. It’s a cancelled check. The future never really comes. It’s a promissory note.
This past summer found us walking on many of the same beaches on which we had walked a few short months after my injury. Though the beaches were the same, I am different now.
During our most recent trip, we passed a small nature trail at Bahia Honda State Park. In the “Summer of Innocence” back in 2011, Sarah and I walked a nature trail there. Both shutterbugs, she and I, we snapped countless flora and fauna shots. One of those butterflies travelled north with us in digital format. Never would I have imagined that this winged beauty would be the exact same butterfly I would use on the cover art for my book.
Tears filled my eyes as we passed that same trail. It’s been such a long journey. Sarah never even turned to look at me. She felt high and sudden emotion rise from deep within me. Her grip on my hand tightened ever so slightly. We are connected at a soul-level like that.
Yes, living life in the moment is the real key to being okay with all this. In the moment, there is no fear of an uncertain future. In the moment, there is no regret for choices that could have been made differently. There is safety, security, and peace to be found in this moment.
And at least for now, in this exact moment in time, I am okay with that.
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How long will it take to be normal? When will I be at 100%? When will I get to be "me" again? How am I doing? Everyday someone asks me, or somewhere in the back of my mind I pose these questions. The part I don't want to accept, or can't bring myself to say out loud is that the person everyone associates with this face doesn't exist. We are very similar (some might even superficially say we are twins), but there are subtle differences that I don't really recognize or can't explain. We share names, memories, interests, family, etc. but moving forward from that exact moment when I/we hit my/our head, our paths diverged. That Jason is moving along with his family, friends, career, etc. His life continued on (leaving me behind). This Jason (the "me" I have become) got knocked into a lonely, confusing, frustrating, depressing world. A world where I try to make my mistakes better by constantly saying I'm sorry (I apologize for things nobody would ever consider apologizing for). My heart aches a little more each day when I see what that Jason has forced his friends and family to endure. I don't feel sad in a, "why me?" sort of way, but in a, "why them?" way instead. I have to learn to live with myself, but nobody is forcing anyone else to. They all choose or feel forced to deal with the "new me". I could never put into words how much I appreciate all of them for everything...
Hopefully, they won't become aware of the fact that their husband/father/son/brother/friend died that day. I hope that they see the similarities between me and him, and don't focus on our inherent differences. I don't want anyone but me to mourn the loss of that Jason. I want to carry that burden for everyone else (it, to me, is the only fair thing to do). It's just one less thing that everyone in my life should have to deal with (I'm more than enough for now). Accepting the "me" that I have become is a big enough obstacle for everyone to overcome. My wife and children have been very understanding. I realize that my 4 girls understand the least with regards to daddy's mental state. I try to stop and think before I interact with them. I try to be overly understanding, calm.... I fail almost all of the time. I try to revisit instances when I've reacted inappropriately, and explain that I'm sorry I yelled or got upset, but I'm terrified that they are going to remember only those bad times (forever). I don't want to be remembered as a tyrant. I don't want them to associate me with some sort of mental illness or deficiency. I want to be the funny, smart, happy, and outgoing person that they knew. I want everyone to have great memories of me. I want to be the sort of person that people are glad to know/be friends with/be related to.
I read and read and read trying to find answers. Answers as to what I will become, why I feel the way I do (mentally & physically), & how to help the people around me cope... The reality is, there are no definitive answers. Tough pill to swallow, right(?), but in reality each TBI is different. Dr's can talk about similarities to other individuals with TBI's, but our injuries are as different and varied as snowflakes. Let me tell you, that is a difficult reality to accept. I understand completely why my TBI isn't like the next person, but boy would some answers be nice. I think part of me just wants anyone but me to come to a conclusion as to my prognosis. JUST TELL ME WHO I AM DAMNIT!
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Thank you for sharing. I so can relate in it so much. Struggling after 3 1/2 years later. And to accept the new me. Anger is my toughest, and being depending on husband, has moments of frustrations. Everyday I keep to myself and try to love the new me. I have fatigue, and it's a struggle to do things. The lack of sleep and head pain all the time wears me down. Grateful for all my doctors, therapist, case worker, vision therapist too. Mostly my husband whom has done over 100% being there for me. Still I hope I will be able to get independent again (soon). I am older so, I may be slower than if I were younger
Thank you,
Gailann
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