The Club I Never Wanted to be a Part of

The annual Vermont Brain Injury Association Conference was this week. What was once a conference I was absolutely terrified to attend (because it was a club I fiercely resisted calling myself a member of) has now become something of a very sweet family gathering for me. This conference is vastly different from any other professional conference I have attended, largely because of the deep humility of the people there. 

There are no large egos walking around, trying to impress each other with their fine clothes, their astounding ideas, or their gotta-have magic solution for sale. No one is pushing an agenda, no one if offering a miracle cure for sale... we all know there isn’t one....and everyone is there simply to simply support and be supported, to offer kindness and helpful tips. This conference is full or ordinary people whose lives have been profoundly shattered by loss, and who are left with humility, compassion and kindness. It is a place where everyone is accepted for who they are, and no one is expected to be perfect.  

There are survivors, family members, professionals, and caregivers. Many people in various states of ability and disability, where it is ok to be flawed and human. Everyone is accepted for who they are, and no one is expected to be perfect. Can you imagine if the rest of the world were like that? Totally and completely free to be oneself without the pretense of perfection. It is free from superficiality and competitiveness, and is truly a profound experience I have rarely experienced elsewhere. A unique sanctuary of total acceptance of self and other.

How did all these people get like this? There was a very large cost. It was best communicated by the keynote speaker, PJ Long, TBI survivor and author of “Gifts from the Broken Jar”. In one of her workshops, she had us do an exercise. We essentially listed the eight things that we most identified with, 
that defined who we are, and that gave us a sense of self. If you want a profound experience, go ahead and list yours now.....

Mine looked like this (pre-TBI):

1. Being a good mother
2. My friends
3. My work helping others
4. My commitment to be of service to the world
5. Being with the love of my life
6. Being optimistic and happy regardless of the situation
7. Outdoor activity: hiking, kayaking, camping
8. Yoga & Dancing for joy

The next step is to take one of those things off, and imagine your life without it. Go ahead and try it. Then take another, and another, and another..... until they all all gone. Imagine your life now. That is the experience of TBI. Only you don't get to choose. You are left a stranger to yourself, with untold losses that defy anyone's understanding, even your own. As I looked at my list, I saw, that yes, one by one, all those things have been stripped from my life.

What is left? A profound relationship with Self. I am unsure of who that self is now or how it fits into the world, but I sense it is Strong, and it is Beautiful, and it too will find its way into a new life.

APPRECIATING THE CONTRAST

Spending much of last month in my house with my eyes closed (in order to rest my brain from the overwhelming task of visual processing and the pain of light sensitivity) has opened my eyes to a new world. Honestly, I have spent much of the last two years in my house in the dark, but last month was extreme in the way that the first four months were. What happens when we go that far into the depths of our inner stillness and darkness?  A lot, but that is not as interesting as what happens when we come out.

Coming out from the literal darkness, I am filled with awe and wonder. How can I describe the incredible beauty of the natural world we live in and are a part of? Such beauty pierces the heart wide open when we truly see it as if for the first time without the jaded lenses of our past. My eyes well with sweet tears at the sights and colors, the immense beauty and perfection of it all. I gaze in wonder at the many colors of the lichen on a fencepost for a long time, and marvel at all the mossy shades of greens and reds and browns until tears of joy pour down my cheeks. I sit and see the light shine through blades of grass or the joyous flight pattern of birds soaring overhead, and my heart is bursting with awe and wonder.

Time and time again, I return from my brain’s scary episodes of complete meltdown and non-function, and it is the beauty of the senses that brings me back. The experience is one of being locked outside of my own body, and not knowing how to get back in. Each time, it is a soft touch on a single inch my own skin, the perfect vibrational note of a single pluck of a guitar string, or the healing green color of a single leaf that return me back to my body and to a place of calm. To see the world with the innocence of a child is a beautiful thing. Experiencing this exquisite dance of sensation requires  s  l  o  w  i  n  g   d o w n. Way down. I sit in the amazing magic of colors and shapes and textures in a flower, and what seems even more amazing is that the rest of humanity is missing it.

Without a month in the dark, would I be moved to tears by the beauty of a butterfly landing? I think not. It is the magic of contrast that makes us appreciate and be grateful. We can bemoan the darkness, yet without it, would the light ever shine so brightly? The sun was not appreciated all summer as much as it was this morning when it was such a treat after a gray rainy weekend. As much as we would rather skip the dark moments of our lives, perhaps we can learn to be grateful for them, as they make the light so much brighter. They are two sides of a coin that make up the whole. It is all part of one whole amazing adventure in this miraculous vehicle we call body and this equisitely beautiful planet we call home. Let's take care of both this precious body and this precious planet.

             -William Blake

My Friend Rita's Poem

Recovering from a Brain Injury

I am exhausted but...

I can not sleep

My thoughts are here but...

I can not think clearly

My words are many but...

I can not speak

I can not see what you see but...

I am not blind

I can hear everything but...

I have to cover my ears

I get hungry but...

nothing tastes the same

I can stand still but...

I can not stop my world from spinning

I feel so all alone but...

I am surrounded by LOVE

By my friend, Rita Chouinard, date of accident 4/3/11

Measuring Progress in Wonderland

I am often asked what percentage better am I since the beginning of my TBI. Inquiring minds want to know! It seems like a good question … from the perspective of someone without a TBI. I used to have a numerical answer. When at three months I was 85% better and at one year I was even better at 50% better since the beginning, I gave up on numbers. That shifting number has twisted and turned, grown and shrunk, and finally turned into a bizarrely elusive concept. Like cutting a distance in half, and always finding you are at the same percentage there. I finally figured out why that is impossible to measure. 

"Let me see: four times five is twelve, and four times six is thirteen, and four times seven is -- oh dear! I shall never get to twenty at that rate!" -Alice

A baseball player is trained to make home runs. The goal, is to get around the whole field back to homebase. I have been trying to get to home base, back where I started batting from. We call that  “100% recovery”. When people ask “what percentage recovered are you?” They want to know, am I still on first base? Have I gotten to second? Am I on third and almost there? Are we there yet? Can we breathe a sigh of relief for you yet? How much longer?

Imagine this baseball player up at bat. He hits the ball and this time it goes through a wormhole and lands in another field. Being a baseball player and only knowing baseball, he keeps running, looking for home base, trying to get to the goal. The problem is, when he went through the wormhole, he landed in another universe. In this universe, the floor undulates, things appear to move when they aren’t, or closer, or farther away, he is drunk without drinking, and he can’t connect with anything through all this pea soup that the air has become. “Curiouser and curiouser! Everything just isn't as it seems”, he says to himself.

"Off with her head!" -The Queen

Being a well-trained baseball player, he starts running towards first, saying, “I have to get to homebase!”. He runs and runs, determined to make a run. He knows he is making progress towards his goal. “I must be 85% there!” he says. After a couple years of running through this pea soup, he wakes up and realizes that this is a different Universe. He has gone through a wormhole. There is no homebase here. He has gone through the Looking Glass. He has landed in Wonderland. There is no going back.

Nothing is the same as he once knew, and he is stuck in this world of pea soup. "Hmm", he wonders in a moment of existential confusion. "What to do? Where to go? I am trained to run towards home plate and goals. Where is the goal? Is “goal”even relevant in this Universe? or is there just BEingness? How does one just BE forever with no direction to turn to? How do I get comfortable with living in Wonderland?"

"I wonder if I've been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I'm not the same, the next question is 'Who in the world am I?' Ah, that's the great puzzle!" -Alice

Opening to Brighter Futures

While I had so many things I wanted to write about this week, the powers that be had other plans for me. It has been a rough week and a half. I have spent it horizontal, unable to open my eyes or move, very much like I felt in the early months of this journey through a brain injury. Visual processing takes so much energy for me. After ten minutes with my eyes open, looking at stationary objects in my house, I feel nauseaus, my brain feels exhausted and I have to close my eyes and rest for a half-hour. It is as if my brain is under a huge strain, understanding the images my eyes are relaying. My dizziness is so severe, any slight movement of my head or eyes causes extreme disorientation. When I walk, my feet step into mid-air, having no clue where the ground is. I am feeling a little better now after ten days. So last night I dared carefully picked up three beans off the kitchen floor and became so disoriented, I had to rest again for 45 minutes. Not so better.

I have a constant sensation of falling. When I am lying down, it feels like falling through space, endless falling all night with no bottom to land on. It makes sleep impossible. I have headaches, I’m nauseous with any slight movement, and I feel that strange sensation in the back of my head that isn’t supposed to be there. The one that used to scare me and make me think “something is not right in that part of my brain.” Indeed, it turns out that both the visual cortex and the cerebellum are back there. Which correspond with visual processing, balance, and movement. What this amounts to, is seven days with eyes closed much of the day, laying down, barely moving.  I haven’t even gone outside during this glorious last week of summer, because the light is blinding and painful. The daily exercise of a waddle around the block with trekking poles, has become a waddle around the house I managed twice. I live under my eye mask, in this version of hell, wondering if this will be all there is for the rest of my life.


Every brain injury is different.  Our brains are responsible for every one of hundred of function in our bodies  perform. A TBI can affect any one of those. It can affect hormones, blood pressure, sexual function, coordination, hearing, smell, muscle  strength, fine motor skills, you name it. Amongst other things, I have visual processing issues and a busted vestibulo-ocular reflex. Two years ago, I never even knew I had such a fancy sounding reflex! It is amazing how much I have learned about the brain after two years of trying to figure my new self out. The vestibulo-ocular reflex is how our eyes communicate with our sense of balance to figure out where our body is in space. My brain literally isn’t getting that message.

My doctor says that my brain got twisted in the fast rotation of the boat in the accident. The boat spun in a 360 degree flip in less than a second, with me inside it. My doctor says it is as if my eyes are facing forward, but the part of my brain that interprets the images is facing backward. This is what is feels like. The constant pain in my left eye feels like a pulled optic nerve straining to do it's job. It takes all my energy to just have my eyes open, and for my brain to figure out what my eyes are seeing. Eyes closed is the only time I truly feel calm and safe.

This is what my world looks and feels like.

Perhaps I am being called to a deep silent dark place inside. Perhaps, I am meant to keep my eyes closed. This isn’t easy, when there are responsibilities to attend to, and a child to raise, not to mention the Earth’s beauty to behold. I often try to pretend I am blind, but that disorients me further since the only way my brain has any clue about where my body is, is by what I can see. Most blind people have a sense of proprioception and balance, giving them equilibrioception and ability to move through space that I am lacking. 

After two years of intensive Rehab and complementary therapies, when I can’t even open my eyes or move my head in the slightest, I am having to face that this could be all the healing I get. I might spend the rest of my life like this. I am left with some big thoughts and feelings. Is this a life worth living? What is the purpose of a life spent laying still with eyes closed? How can I find purpose? What do I have to contribute that is of any value to the world?

I spend much time in prayer and meditation, not knowing what else to do. In some small way, I feel that this is my contribution right now. I pray for healing. I pray for people. I pray for the Earth and all it’s inhabitants. I pray for the waters around Japan and for peace in the Middle East. The prayers are short as is my attention span, and I wonder, “What if our state of being was actually our biggest contribution?”. That has always been an intellectual concept for me, but now I am forced into that being my reality. Does our state of consciousness still count as a contribution if we are home alone and don’t interact with other people? My Dad used to say “If a tree falls in the forest and no one is around to hear, does it still make a sound?” How do I find meaning in this new life? This blog is essentially my cathartic quest for understanding and meaning amidst great challenge.

I am doing a full moon meditation today with the Global Coherence Project on “Releasing Negative Projections”. (I know the full moon was 8 days ago, but that is how long it takes me to edit my dictated writings when I can only open my eyes ten minutes at a time.) We are focusing on releasing the way we humans stand in the present moment, and project all the negative scenarios that we think will be our future. It is the perfect theme as I lay here, wondering if this hell is my life forever. I realize that I am fine and at peace in each moment. As I told my laboring women for so many years “you can do ONE contraction, and really that is all that is asked of you at any one time”. It’s when we project “Oh my God, if I have to do this forever, I can’t possibly make it” that we get into trouble. It’s the thoughts that take us out of the present and create the despair and pain. We can do THIS moment, and truly that is all there ever is.

As bad as it all seems, what if we could really trust that it is ok? What if we could really trust that everything is perfect just the way it is. Perhaps some greater picture is unfolding and someday, hindsight will illuminate the divine perfection of all we experience? Just because I haven’t fixed my vestibulo-ocular reflex in two years of intense trying doesn’t mean it will always be this broken! So my mind, desperate to get out of pain, immediately wants to release negative projections about my circumstances being the same. I will be all better, right? Hope, it is a tricky place. It takes one out of the present moment. Sometimes we have to hold onto hope, sometimes we have to just accept what is.

Maybe it won’t get better. Maybe releasing negative projections isn’t to put a positive spin on everything, but to release the meaning we are assigning to the uncomfortable circumstance. Maybe I will still be sitting in the dark, under my eye patches, unable to move or turn my head 30 years from now. But what if I were sitting in bliss with that? Releasing negative projections doesn’t mean everything will be perfect. Even before a TBI, life has never been “perfect”. It is messy. There has always been some circumstance in my life that has felt intolerable. What if we could find the gifts in the imperfections? What if the challenges themselves become the rich experiences of a path that we wouldn’t chose to skip if we could. Mind you, I am playing the “what if” game, knowing that years of distance can provide a different vantage point. Because right now, I would give anything to have my vestibulo-ocular reflex back! When we stand in the question and open ourselves up to greater possibilities than we can see from where we are standing, everything feels lighter. Where are you projecting negative futures in your life? The future just might be brighter than we think, without or even with the circumstance we can’t tolerate.

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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March is National Brain Injury Awareness Month, and I feel it is my duty to raise awareness of this heart breaking tragedy and speak for my brothers and sisters who can't. Speaking is easier for me than writing, so here is my recent 10 minute talk at the Brain Injury Association, on just a few challenges of living with a TBI. Enjoy, and please post your comments. Thanks!

Watch Nathalie's talk here.

Jump in Time

I was originally going to post my story from the beginning to now on this blog.   I wanted to share all those impossible difficult moments of embracing a brain injury, but didnt have the typing skills or ability to figure out a blog at the time.

Now that is all in the past, and I have lost interest in talking about the past. Right now is so rich! So excuse me now, while I jump from then to present time. I may occasionally put in things about the beginning of this journey, but it seems less satisfying than starting from where I am. So here goes, present tense, life with a TBI. This is where I come out of the darkness and into the light!

From Social Butterfly to Social Catepillar

11/20/10 I went out to a show tonight wwith some friends. It reminded me that I am still a newborn baby. THe music was too loud, I was dizzy and loopy and aware of my sypmtoms, feeling seperate from others, no seprate from LIFE. I feel seprate from life. I see others dancing and laughing and I it looks so familitar and so foreighn to me. I cant dance, I cant stand or move my head without feeling dizzy. I feel like I have died. I have died and now I get to watch everyone live. Like an outsider, an observer.
I was pretty jprou d of myself for keeping up with the conversation and finding somethingk to contribute. But I also wasnt sure how I was coming off. I am so scrambled inside and no one realy knows. They thinkg I am like them, with the same abilityes and awareness. I am not. I am scrambeled and trying to maintain concentration and awareness. I have lost my self awareness. I have offended 3 people this week. I’m not fsure if its waht I said or maybe jsut how I siad it. But I am jsut expressing myself and wondering if I am putting my foot in my nouth. I really dont know. I used to be so sentsitive to saying the right nthigns. Now I dont know how I come across to others. Like being drunk, unaware, oblivious, no ablitiy to be sentsitive. 

I wonder if I should just hide. Be quiet. Dissapear for a year. But I dont want to hide. I want to feel connected with pepoel. I watn to find dignity in my disablity. To be a part of life. Will I reagreat this? Will I shoot myself in the foot? Ruin my rellationships? Turn off everyone? I dont know who I am anymore. I dont knwo myself.

Will this go on froever? Will I get my life bakc? Will anone ever find me lovable or attaactive now? How do I forgive myselff? Am I depressed? What is the differnece betweeen depression and grief.? What I label the emotion makes a big difference. We are what we say we are. Depression feels stuck, permatnent and unhealthy. Grief feels temporary, movinbg through, and healthy. I will say "I am grieving", not "I am depressed". I am griefing the losses. Many, many losses. It feels right to be grieving. I died.