Saturday, August 18, 2012

Hitting the Two Year Mark

Six months into my Traumatic Brain Injury, my friend and healer, Taj,  said “you need to give it a year or two.” “Really??”, I couldn't believe it. It would never take me that long. I was going to be better any day now. I was a healer. I understood healing. “A whole year?”, I asked her incredulously. “Or two”, she reiterated,  “a TBI takes a while!” So I set my sights on a full recovery beyond the “any day now” mantra I had constantly repeated to myself and believed, to mostly recovered "within one year", and a full recovery in "two years at the very outside". I still believed it wouldn't take me that long. I believed that my sheer optimism alone would get me there. I believe in spontaneous healing. At the time of the accident, I was on my way to becoming a "Heal Your Life" workshop leader for Louise Hay. I was in negotiation to create a series of "Heal Your Life" CDs. Healing was my life's passion.

Last June 29th, I met that two year mark of the sailing accident which caused my TBI. I dreamed of the second anniversary as the time when I could look back and reflect upon all the trauma and challenge that I had survived. Having been to hell and back, and having great words of wisdom and pearls of insight to share. I thought  I would be looking back, as if upon an interesting but challenging trip to a foreign land. Like going on a trip to Africa to help villagers and contracting malaria, and be able to say “wow, that was an interesting experience! I am richer for it and I am glad it is over.”

The second anniversary came and went, and unfortunately my symptoms haven’t come and gone so easily. Recovery is painstakingly slow, and a constant test of patience. I am still in the midst of living with a brain injury, unsure I have made much progress.  I still struggle to figure out where the floor is and where my body is in relation to it. I still struggle with any movement, including simply moving my eyes, my head or riding in a car. I struggle with coordination, reading, writing, memory, focus, concentration, exhaustion, and overstimulation. To reflect back up on the latest overwhelming difficulty, I only have to go back a few hours, not two years.
Even though as a healer, I may have thought I understood healing, I hadn’t accounted for my inability to apply the principles of healing due to the fundamental operating system, the brain, being the part that didn't work.

I had nothing inspiring to say to honor the second anniversary, so I chose to say nothing at all. It’s a choice I make frequently now, as I sit as a silent observer of life going by.  As more time goes by, I am more and more separate from the daily rhythms and interactions and thoughts, that used to comprise my life. They have become a distant memory in a now very limited version of that life.
Now I look back and know that two years is just the begining of this long road to a new life.




I have always been a positive and optimistic person. I have always taken the great challenges in my life and turn them into opportunities for new possibilities and found beauty in every storm. I thought my two-year anniversary, I would be telling tales of the beauty slowing down, the learning to ask for and accept help,  the profound of simply sitting and being, my deeper understanding of healing, and all the wonderful ways that this has made me a better person. My life has always been about contributing to the world, and I knew I would never be given such an ordeal without also giving a gift to elevate those around me.  

The truth is, there aren’t a whole lot wonderful things to say about a traumatic brain injury.  Finding something wonderful to say, requires such a deep stretch of the imagination, it doesn’t feel authentic (yet). I haven't visited a foreign country and returned to tell the tale. So far, I got stuck there. 

TBI is horrifying and tragic experience that has created loss in every part of my life, and in the lives of 1.7 millions of Americans each year.  That means 3.4 million unfortunate Americans of all ages and backgrounds who have joined this club just since I have.  It truly can happen to anyone. And it is heartbreakingly tragic beyond belief. I met with a young woman yesterday whose symptoms are similar to mine. Sitting with this beautiful, bright, athletic 20 year old, who had her whole life ahead of her, whose capacities are now so limited she cant even watch a movie, even though she looks fine, broke my heart to pieces. A life full of limitless possibilities can become so limited, so quickly.

What I can say reflecting on this second anniversary, is that I have learned to look better. Well enough in fact, for people to never guess there is anything wrong with me. I rarely stutter now,  because when I feel like it is just too hard to speak, I don’t, I choose silence.  When I can't follow a conversation, I just pretend to get it, because I've learned that if I am doing poorly enough to ask, I probably wont understand the reiteration either. I can walk short distances fairly well because I have learned to always hold onto someone or use trekking poles-- in spite of every rude stranger’s remark about skiing.  I am becoming aware enough of my body to remember to put decent clothes on in the morning, and am now able to understand approximately what top goes with what bottom. I have learned to use Dragon Dictation to write this to cover up my clumsy dyslexic typing. I looked well rested, and less stressed than before the accident, because I sleep so much.  I don’t fall asleep in the middle of restaurants anymore, because I know not to go to busy restaurants, parties, or other public places. They are simply too overstimulating, and caused me a lack of function that results in embarrassment. Yes, I can say that I have learned to look darn right functional. On the outside,  to everyone’s relief, it looks like a complete recovery.

Here is what they can’t see....

-To be continued-



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6 comments:

  1. Nathalie, that was a beautiful post. Well said, thanks so much for sharing!

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    1. Thanks so much for reading and commenting Marna! Your interest and support means so much to me!

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  2. Thank you so much for sharing the world you are living in Nathalie. What an insightful piece of writing... and how hard it must have been to put this all in words !!!! I understand a little more now how it is, and my heart goes out to you. I understand why you are a quieter person now, and why you don´t go to public places much. I am happy you have a good friend with you to help you.

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    1. Thanks so much for your continued interest and support Sandy! This homebody appreciates it!

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  3. Nathalie,
    Ah, the fine balance between remaining optimistic while accepting the current situation. For me, it is made more difficult because the changes that the outside world can see do not reflect the internal struggle. Like you, I am learning to conform more. Avoidance of difficult situations is effective and leaves me feeling better, but I still miss what I had.

    I want to scream at the doctor who told me to give it a year. Maybe, he was playing the odds hoping I would be like many people whose symptoms gradually wane. It's not like I would have preferred a fatalistic prognosis, but at least, tell me all the possibilities.

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  4. Hi Aly,
    It is such a fine balance isn't it? While we have to have hope, sometimes I wonder if it would be easier to give up hope and know that this is it. This is what we have to live with and rebuild a life from. An amputee does lie around wondering when his leg will grow back, he knows what he is dealing with, grieves, and then figures out how to make do. We have no proverbial leg to stand on when we live with so much hope. It is as if we don't have any solid foundation on which to build the new life. I have heard that prisoners who are optimists have the hardest time in prison. I just can't toss out hope though. We need both hope and acceptance simultaneously.

    I am so glad to have fellow survivors like you who understand! It is not possible for anyone to know how much we struggle, because this is so invisible. I think that is why I write, in hopes that we who live with TBI can all be better understood. Thanks for reading!

    Nathalie

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