Trying to figure out this new life is not a task for the faint of heart. Just try to fathom the task of having to rebuild your entire life from the ground up. Now add to this a bit of cognitive loss, a dash of challenged comprehension, a teaspoon of aphasia, and you’ll ask, “Have you seen my old life?”
Piece-by-piece, like a ginormous jigsaw puzzle, I’m trying to make all the pieces from my past life fit into this new life. But some of the pieces are missing. More than a few are broken. There are even pieces from an entirely different puzzle in my box.
Over the last few years, I have come to the slow realization that there is no way to wholly rebuild a life shattered by traumatic brain injury. There will always be a few pieces that are missing.
I’ve not been shy about airing my opinion of being called “permanently disabled” by a well-respected neuropsychologist a few years ago. For several years, I’ve beaten his diagnosis into the ground. From every possible angle, and quite publicly, I’ve tried to fight it. But I’m done fighting. I’m throwing in the towel; this kid is just too weary to fight the inevitable truth.
Slow-by-inch, I am coming to grips that there is a shadow of truth to my diagnosis. My fighting has been nothing more than the death throes of my old life with a bit of ego preservation added in for good measure.
As more time passes and new perspectives are gained, I must humbly admit that I do have challenges. I have lost the ability to do many things that came easily to me in my past life.
I have been DIS-abled.
Though she may have been doing it for a while, I now hear my wife, Sarah, speaking more openly about my challenges. She is growing through our shared experience as well. I came home just the other night to catch the tail end of a conversation that included talk about “David’s challenges.”
I listened for a couple of minutes as she shared her view of my life, as she spoke about it out loud, as she validated that we are both forever changed.
Part of me felt relief. It gets exhausting trying to pretend to be uninjured. There is no quip or joke here. I work quite hard to create my own personal illusion of normalcy. A lot of energy is expended, and internal resources are tapped to deny my TBI.
Maybe it’s time to let go and jump into this new life with both feet. I’m coming up on five years with TBI, and I’m still trying to get the puzzle pieces to fit.
When will I ever learn?
Yes, here and now, I will openly admit that I am partially disabled.
There. It’s out on the table. Dem’ bag of bones is open. Hello world, time to take a look - this is my life!
But the story doesn’t end there. If you know me – really know me - then you already saw that one coming.
While I am partially DIS-abled, I am totally RE-abled.
I won’t even begin to get into what was lost. That would be more than a bit depressing. It would be a “Pass the Prozac, life sucks” monologue with no happy ending.
Ah, but being RE-abled means that what was lost has been replaced by something new.
Being re-abled means that I have a newfound compassion for others who share my fate. Being re-abled means that my experience makes me uniquely qualified and useful to serve others. Being re-abled means that much of the fear is gone from life. I’m living every day with a TBI. If I can do that, I can do (almost) anything.
Life really is all about attitude. If I looked solely at what I’ve lost, I’d live in complete and hopeless despair.
But if I turn the tables and look at my new re-abilities, my world brightens, and hope returns. And we all know how I feel about hope.
Comments (14)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
Sorry, gently put, but: stroke is a TBI, or traumatic brain injury-I've been told.
Celyn
Anonymous replied on Permalink
At the moment, I need hope. Because right now, I don't have any.
I was a competitive swimmer on the National Team when I was diagnosed a few months ago with a concussion. It took a long time for diagnosis since I didn't present any symptoms until two weeks past. And even then I was allowed to train continuously. As a result, I am suffering from multiple concussions brought about by my training (flipturns, head movements, pushing past my limits)
I have been homebound since mid September and unable to do anything but like on the couch as I am exhausted beyond words.
This is a drastic change from my daily routine of 4+ training sessions 6 days a week. I was supposed to compete in international competitions this year and I can't. I have lost my sponsorship as well as support from my team.
Just yesterday, I was told that recovery would take up to 20 weeks.
I miss my old life. This one is not one.
Anonymous replied on Permalink
Hi David. I enjoy your blog! I am recovering from a TBI resulting from a horse fall. We went backwards over a 20 ft embankment. We landed in the street below with the 1400lb horse on top of me. My TBI was missed. In spite of the severity of my other injuries they never did a CT scan. My damaged helmet was with me and paramedics had passed on that I had been unconscious for at least 10mins. I was in the trauma unit for 10 days. The Dr has in my records "no concussion". I was diagnosed one year later when I was still so depressed, anxious, overwhelmed and stupid I knew I wasnt right. My physical injuries were almost healed but I was clearly not OK. I made the appointment with a neurologist colleague. The subsequent MRI showed bleeding, tears and shearing. My QEEG puts me in the category of Moderate TBI. . not good. I work with brains. I do neurofeedback for all kinds of brain related problems including TBI, stroke, and other disorders. My neurologist sent me for rehab. . He said at my age and since this was my second TBI my recovery would likely be limited. I was determined to prove him wrong. I have been doing the newest form of neurofeedback, four-channel, and in 8 weeks I went from being in the 12th percentile on some cognitive tests, back to the 90th percentile. My point is this: check into neurofeedback. Find someone who works with TBI..especially four channel. Dr. Rob Coben in Fayetteville AK is the best and has done the most research. He may know someone in your area. He has taught me how to fix my own brain and I am currently working with 3 other TBI patients. Contact me if I can help. I feel almost back to normal and I'm not done yet. I it will be two years since the accident on January 2. P.S. I hope you don't ride with earbuds! That's illegal here in California! Dr. Timmie Pollock. equexcellence@aol.com
Annie replied on Permalink
Yes, I second this about neurofeedback. There is no other therapy as powerful for this. I went through all the stages of grieving and acceptance and trying to be a different version of myself, went through qeeg neurofeedback and had to go through the whole process in reverse, accepting that I HAD come back! When I talk to other TBI survivors, I can tell a marked difference in the cognition of those who've had this therapy and those who haven't. If you're reading this and have survived a tbi, do yourself a favor and look into it and find a reputable licensed therapist, bcia.org is a good place to start. It is pricey, but it's the best money you'll ever spend in your life.
Anonymous replied on Permalink
I'm one of the lucky ones. On a sunny december morning in 2007 I fell off a roof on top of my ladder. Working one minute in the hospital the next. My life changed for ever. As a matter of fact after my tbi I thought my life was over. Just could not get past the feeling. Thing is I had a wife and 4 kids that depended on me. I was the sole supporter of my family. Back to my first comment, I'm one of the lucky ones. I had to take cognitive and speech therapy for several months but I did not lose hope or my need to take care of my family. 30 days after the accident I was back at work, remodeling a master bath for someone who I had already remodeled one bath for. This was probably one of the hardest things that I have ever done. It was also one of the smartest things that have ever done. My doctors and all my therapists all descuraged me from doing so but with a family to support there was not much of a choice. I moved forward and pulled my self up from the depths of dispair and got my life back. I've gone on to being a contractor and flipping houses for other people and several for me and my wife. Life has been good to me and my beloved better half. Can't or should not complain because I am one of the lucky ones I got my life back even though I still have complications from my tbi. Never give up on you. Because if you do you my lose your self and have a hard time finding your way back. God bless you all Tony Watson.
Anonymous replied on Permalink
I am coming upon 5 years since I survived my TBI. This article, your words...I could have written them. If I could have found the words. You spoke my heart, my thoughts, my feelings so eloquently. Congrats. God Bless. Thank You For sharing.
Anonymous replied on Permalink
This article is confirmation of the reality so many of us face when we love someone with TMI - thanks for helping all of to become re-abled!
Anonymous replied on Permalink
Wow, this is my life too. I have the best wife possible and she has helped me embrace my "new life" and I have accepted this challenge and am making it work! It's tough every day and I struggle but I'm now in a position to help others in much similar situations. It's was tough to swallow being permanently DIS abled but life goes on and I can't take the chance of missing it. People tell me about the way I was but this is the new me now so I gotta make it work for me and my family. Life is short and I accepted this challenge.
Anonymous replied on Permalink
19 years post and coming to terms with this TBI goes on. Your doing awesome. Godspeed.
Anonymous replied on Permalink
Shared it, very true, loved it! Thanks and love
Anonymous replied on Permalink
We talk about what we lost and what challenges my husband has all the time. I chose last week to sit down and write what is still the same about him. What most people don't see because they can't get past the disability.
http://www.hawkinssmallrevelations.com/#!Do-you-see-what-I-see/c218b/5633494b0cf2354c3157e314
Thank you for all your writings. They are wonderful.
Danielle Hawkins
Anonymous replied on Permalink
I remember the day I was issued a "temporary disabled" handicap car tag and I was crushed! Now, I was given a permanent one! It stings but grateful that now I have it. At first it bothered me cause I was 36, not "old" but walking far is not always easy!
Anonymous replied on Permalink
WOW WHAT WISDOM YOU'VE GAINED- AND ONLY 5 YEARS IN- I'M STILL DENYING BEING DIS-ABLED EVEN THOUGH IN MANY AREAS I FEEL UN-BLED AT TIMES. YOU & YOUR FAMILY CELEBRATE EACH VICTORY- NO MATTER HOW SMALL-
Anonymous replied on Permalink
This is so well written. i have not suffered TBI, but I have suffered a stroke 2 years ago, and have some similar challenges. i also blog about my life with MS and stroke and would love to share your article @ https://www.facebook.com/oldbrainnewtricks/?ref=hl
with your permission. Thank you and be well.