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.