Brain Plasticity in Real Life

In order to grow new neuro-connections, we have to do the things that are hard. We have to stretch into the uncomfortable places. Our brains want to automatically take the familiar road. But the easy path is not how we grow, either emotionally or biologically. (One of the cool things about experiencing a brain injury is that you really understand experientially that emotions are biology, There is no separation, but that is a different blog post). So let's just say for now, that mentally, emotionally, and physically, we only grow by being challenged.

In order to grow a new track in the brain, you have to get out of the comfort zone and do the hard stuff. The stuff that feels impossible, makes you irritable, and makes you want to cry. Regrowing brain pathways after a brain injury or stroke is hard, irritable, frustrating work. Do you remember doing the hard math problems in grade school and feeling frustrated with the impossibility of it? Do you remember how eventually, after enough tears, something clicked and you got it? That click is a new neuro-connection being formed. It is a new physical connection in the brain. After that, it was so much easier that it was hard to understand why it seemed so hard moments before. The brain is biology.

Post-TBI, we have to grow those neurons back, one by one. It is a long, often agonizing, marathon. For me, the hardest Neural Reconstruction Project has been moving my eyes, my head, or tolerating any motion around me.

I am feeling nostalgic today, remembering a year ago. I was back in the ugly hospital basement at Brain Injury Rehab, desperately pleading for help from the best balance specialist in Vermont. We had spent four years trying everything. We had elevated my seasickness intentionally, every hour, for months, and years, trying to grow a new brain track that would allow for movement. We had gone through countless indignities: taping paper blinders to my glasses, having my friends wheel me around the house in an office chair, wearing blindfolds on busses, having me sit by a road and watch traffic. All of this was in 30-second increments. It was still all I could handle.

"Walk down the corridor", my PT instructed that day. Scrambled up under the florescent lights, I anxiously obeyed. "Now faster!" I felt so sick. "Now turn your head and walk." I proudly accomplished four slow head turns, and then fell against the wall, beyond dizzy and sick.

"Are you okay?" she asked. I could not respond. "Let's go lay down", she offered. Internally I rebelled. I was no wimp. I could do this! I could do FIVE head turns! I was not giving up!

I unglued myself from the wall to keep going, and instead realized that no matter what my brain-as-willpower said, my brain-as-biology said "NO WAY". I leaned on my therapist, unable to walk alone, unable to open my eyes, tolerate any more input, or find any words. She led me by the hand to the familiar old plastic mattress to rest.

After ten minutes, my brain could settle enough to listen. "How are you feeling?", she asked. "Like my b-b-brain is s-s-scrambled into a million p-p-pieces", I managed to get out the words, anxious to hear her next brilliant creative solution to get me off this Highway to Hell.

"Nathalie, I don't know what to say to you. I have tried everything with you. Nothing is working. I have nothing left to offer. I am going to discharge you from Rehab."

The kick in the gut was compassionate and swift. How in hell do I go through life like this?! Unable to move my eyes! I had spent weeks and months sitting or lying in total stillness and darkness, unable to move, and unable to process vision without utter nauseousness. I was a paraplegic who could move. I was a blind person who could see. Perhaps worst of all, I looked normal. No one could understand my loneliness and despair. Paraplegics and blind people got help. I was on my own, not qualifying for any support. I had just spent four years trying to empty a dishwasher with as few eye turns as possible before needing to rest for long periods. How does one embrace a life of this?

Resistance reared like a wild horse, ready to fight or run. "Run like hell!" yelled my adrenals. "How do you run from yourself?" wondered my logic.

When life brings what we don't want and there is no way out, there are only the questions:

• "How do I embrace this too?"
• "How do I find the good in this?"
• "How do I accept what is?"
• "How do I still remain open to miracles... without counting on them?"
• "How can I allow for happiness even if this situation lasts forever?"

Sometimes miracles happen when we are open to the possibility. I did not give up. I have found my Miracle. One year later, I am walking without walking poles. I am riding in a car more comfortably.  I am driving short distances. I can even empty the dishwasher and cook, my impossible dream just a few months ago. I have fewer days where I can only sit in dark stillness.  The neural pathways are being created even when I was told years ago that was impossible. Never listen to never.

I am enjoying life again.

My next dream is to dance.



                                           Thank you for your comments below.

I've Been Diagnosed With...

One of the stranger challenges of living with a brain injury, that no one talks about, because no one can identify it, is that we become a complete mystery to ourselves. So much is wrong with us, it is like a big tangled web of yarn, one piece indiscernible from the next, with no way to make sense of the mess. Someone without brain issues would be incapable of figuring it out; but we get the added challenge of the thick cognitive fog. 

Unable to figure out ourselves, we rely heavily upon our doctors to explain "us" to us. We are thus more susceptible to believing what our doctors say. 

Then countless doctors tell us nothing is wrong with us, perhaps because they do not have the tools to see it. They lead us to believe we are crazy or lazy. So we become ashamed of our inabilities; sensing no other option but to hide our heads in the sand for the rest of our lives. Somehow, doctors so often add to our tangled TBI mess of yarn, making us more confused and depressed. This is a big topic in support groups. Painfully familiar, it seems we all have the same doctor. 

I am a mental health professional and an emotionally healthy person. And I am about to make some scary disclosures. For all of us, this story needs to be told. 

I really wanted to know why after four years of working with my state’s vestibular specialist, I have "the most persistent case of dizziness"she has ever seen, and nothing is helping. Motion can still feel like it shakes my brain into a million pieces and renders me useless. I wanted to know why I now spend my life trying to figure out how to empty a dishwasher with as few heads turns as possible before I have to rest. I wanted to know why I have to sit still for several hours each morning before I can use my eyes, read, ride in a car, or move. Anyone who thinks I want to lay on a couch and watch TV with my life, does not know me. 

I wanted to know why my eye constantly hurts so badly and feels as if the ligaments are being pulled out of place and can not tolerate light. Why does everything appears to bounce? Why did I spend 3 years seriously wishing I were blind because my vision made me so horrified, sick, unable to move, and brain fatigued? 

The first neurologist I saw told me “Nothing is wrong with your brain. You just have anxiety problems". That is why you could only name 6 words that start with “F”". (He might be anxious too if that were him.)

After my first four hour neuro-opthamological (brain/vision) exam, the doctor said ""You just need eye drops, your eyes hurt because they are dry." Huh?! He continued, "There is nothing wrong with your eyes.”    I asked “It's the brain part of vision where the problems lie, isn't that why I am seeing a neuro-opthamologist?” His reply? “Well, there is nothing we can do about the neuro part.” (I'm confused. Then why did I just waste four traumatizing hours?!) 

The second neuro-opthamologist said "You have 20/15 vision. There is nothing wrong with your eyes. I would kill to have your vision".  (Honestly, I was ready to kill myself because of my vision.)

The next one said "You should learn to meditate". (I have meditated and practiced yoga for 30 years. I have taught meditation. I can't move and feel like I just spent 5 years on meditation retreat. He was talking to the wrong person.)

All of these docs were adding insult to injury. The problem is, that we have brain injuries. We believe our doctors. Without the ability to think critically, we are left more confused than ever. 

The fourth out-of-state neuro-opthamologist said “You have a damaged optic nerve, possibly causing the severe eye pain. Oh! This is bad, you see two floors. Nothing we can do about it. You can try prisms, but better get used to it.” ...Slowly getting somewhere. 

I thought the problem was Podunk health care in rural Vermont. So I went to a highly recommended Big City neurologist. I was hopeful. I am always hopeful... til I get kicked in the gut again. That visit wielded my favorite line: "Your issues are too significant for someone who show no damage on an MRI." Long pause... "Have you seen a psychiatrist?". 

(Everything written about mild TBI says it does not show up on an MRI. How does a neurologist not know that?! I really would like to know the answer to that.)  

The amount of ignorance around brain injuries is shocking. Survivors know it is physical, yet we are treated as if it is psychological. Would anyone with a broken bone have to go through this? Many people with TBI finally end up in psychiatric wards. Although much has been discovered in the last few years, my theory is that our doctors were all trained 10, 20, 30, 40 years ago. They still don't get it. 

Desperate for help, I followed the recommendation and went to a psychiatrist. I was beginning to think maybe I was crazy. 

The psychiatrist said "You have the classic traumatic brain injury. Doctors see you sitting in a quiet office for 10 minutes. They don't see it or understand it. That is so classic! You lose your career, you lose your relationship, you cant’ walk or drive, and doctors don’t believe the severity. They think it is a somatoform disorder. It is a part of every TBI story. You are a mental health professional. You could help others understand this. You should write a book.” (I am.)

                            ___________________

My unsinkable persistence has paid off and I finally have a diagnosis. There are names for this! It really is as hard as it feels. 

After a relentless, nearly five-year, nationwide search, I finally found the right doctor. Dr. Laurie Chaikin specializes in visual rehabilitation after TBI and stroke. She says I have one of the worst, and most complicated vision and vestibular issues she has ever seen. (How did I get so special?) 

Here is the answer to my quest: (If you have a TBI, these names may be helpful to you) 

Drum roll please.......

• I have Cyclo-torsion,  means my eyes roll around independently on their axis.  

• I have hyper-deviation, which means when I look left, my left eye moves up and the right moves down.

• I have reverse hyper-deviation, which means when I look right, the right eye goes up and the left goes down. Going all the way from left to right (to scan a grocery store aisle, empty a dishwasher, or cross the street for example), is really difficult... usually impossible.

• Exotropia, means that my eyes are pulled apart from each other and are constantly in pain. I see one and a half overlapping images of everything, which is why I could never answer if I see single or double. Conversion, or fusing them together (to make eye contact or read for example), takes a tremendous amount of exhausting work, but is getting easier after years of exercise. My eyes keep scanning and do not ever focus on one spot.

• Oscillopsia causes everything to appear to bounce. When I walk, there are 2 bouncing floors, one that used to be at my knees and one at my feet.

• Visual motion sensitivity means if anything internally or externally around me moves, including my head or eyes, I have no idea where my body is in space.  

• Alpha-omega pupils, mean when the light changes, (like passing trees or columns in the sun) rather than dilating, my pupils get all confused and open/shut/open/shut/open/shut, flickering and making my brain shut down and creating partial seizures. 

• Central vision allows you to focus and peripheral vision allows you to understand motion and know where you are in space. With a brain injury, they do not communicate with each other as that pathway is broken. Usually, I have no peripheral vision. (It is a bit like looking through binoculars all the time, and if you have ever done that, you know it is not possible to walk down a street easily with binoculars on. You will be sick in no time.)

In short, I have two googly eyes. making me completely seasick and exhausted. According to the Neurosurgeon and PhD researcher, and TED speaker Dr. Uzma Samadani, tracking the motion of the eyes is the best way to detect concussions and other brain injuries that are invisible to radiologic scans. Why was that so complicated?


I can not tell you what a gift it is for an injured brain to finally understand itself! 

Truth is power. Truth sets us free. I am now free of self-doubt, self-criticism, and the anxiety of living with the unknown. Finally, I have something other than quicksand to stand on. I could not stand on falsehoods, but I can stand on Truth. After unraveling enough of the tangled mess of yarn that my brain has become, I can start figuring out how to build a life with what I have left.

If you are dealing with a TBI or any health issue, you need to advocate for yourself. No professional will care about you more than you do. If you can not, ask family, friends, or professionals for help. TBI is primarily a physical problem not a psychological one. If you don't get the answers you need, keep looking!

Never give up. Never give in. This gift of your life is too precious.

If you have a TBI, and you have a doctor who gets it, please share their name and location in the comments below, we need to start a nationwide list. Thank you! 

Thank you for putting your comments here on the blog page.

Collecting Gems

It is so very hard to lose one’s independence at any age. No one ever thinks it will happen to them. Not being able to walk much, drive, or take a bus, I am pretty stuck. I honestly have no idea how to do this. I take it one breath at a time.

Free falling through space on my own, I have been searching for a way to manage this long-term. The system won’t let me in Adult Day Care, I am too young. The swamis won’t let me in an Ashram, I am too disabled. Searching for solutions, I actually did ask both.

My next idea is to search for a safe little town with good weather, that has all I need within a short walk. I have just  flown to a small town in Central California to see if I could function on my own here. The solo adventure itself is daunting. I pack barrels of courage in my suitcase.

Day One:

As expected, three plane rides have shaken me up so badly, that I can barely move or see. My vision has shrunk into a nauseating peep hole and I can’t tolerate moving my eyes at all. The slightest movement of my eyes disorients me and makes me even more seasick than I always am. Information is not traveling from my eyes to my brain. It takes 3 hours to understand my way around my tiny studio. Expanding my world to the patio takes another few hours.

I have no idea how I will get groceries. Even at home, getting food is always the hardest thing for me. The over-stimulation of supermarkets causes my brain to shut down. Somehow, food always finds me when I really need it;  like the Indian saint, Sri Mata Amritanandamayi, who lived blissfully in the woods, and animals and eagles dropped food in her lap when she was hungry.

Today’s  “eagle” takes the form of a friend of a friend, who calls to welcome me to town. “The Farmer’s Market is today, would you like to go?”.  She is a occupational therapist, she gets me. I hold on to her arm for dear life in the visual chaos of the crowd, and unexpectedly, I have produce!

It is magical the way my needs get met, when I never have any idea how they will. I am no longer living a rational life. I am grateful for the gem of kindness.

Day Two:

The Farmer’s Market put me over my stimulation threshold,  and I can’t wake up. I get up once to take a shower which exhausts me so much, I fall asleep again; once to get dressed, which exhausts me so much, I fall asleep again; once to make coffee, which exhausts me so much, I fall asleep again… so much for caffeine. Finally at 2:30pm, I am awake.

Today, I will venture beyond my studio... with the goal to find lunch. There is a cafe four blocks from here. Expanding my world beyond my studio will be a big feat... beyond what anyone without a TBI can imagine.

Concentrating to get through the mental fog, I talk myself through it out loud. “Pull up walking directions on your phone. Study hard to make sure you have a sense of where you are going. Put on the green tinted glasses that relax your brain. Check directions again. Put on the goofy Vibram toe shoes so you can feel the floor. I forgot the directions. Check directions again. Put on the hip belt full of rocks.”

The hip belt reminds me of the confusion and alarm on the airport TSA agent’s face two days before.

“What is this?!”

“It is just rocks.”

“Why are you bringing a fanny pack full of rocks on the plane?!” she accused.

“They remind me where my body is…..I am lost in space and my brain can’t tell..”  

She didn’t know what to do with that.

I only brought one trekking pole on this trip. I need two. I look around the studio. I find a broom stick. I am going out with a trekking pole and ….a broomstick. My life is ridiculous. I am thankful it doesn’t still have the broom on it. That would be an odd picture. But I  would do it with dignity.

I write up a little note, the way I learned in Rehab, “Hi. I have a brain injury and I am lost. Can you please help me get to XYZ address? If you touch my arm firmly, it help me to get oriented to where my body is. Thank you!”.  I make sure it is the page open in my little notebook so I can pull it out (hopefully) when I can’t move, read, or think.

Next, I get dressed up. This too, is a compensatory strategy. If I am relying upon strangers to help me, I don’t want to look like a crazy person. I figure it is better to have them confused by me than scared. “Always look your best, when you go out with a rock belt, toe shoes, green glasses, a trekking pole and a broomstick!”. That is my new motto.

Finally, I walk out the door for the giant four block excursion.

I am so curious to see this town, but I have to be really careful not to look around and waste my little visual processing power. I pick a spot straight ahead and focus intently on it. Every half block, I rest, and hug a tree. Trees keep me grounded, they help me make my way through town. I have hugged so many trees in the last four years, I have learned to listen to them and sense their personalities. I love trees. They have become some of my best friends.

At the cafe, I find it is crowded and noisy, and I am about to topple over.  I can’t stay in this environment. A sweet blonde waitress cuts through the standing room only crowd, and dashes across the room toward me. “Hey sweetie, do you need some help with the menu?”. She puts a firm hand on my arm. I smile, it’s just what I needed: not only a nice person, but one who knew to touch my arm and remind me where my body is… as if she read my note. I thank her for her kindness, and tuck it into my basket of good things from today.

I collect gems like this as I go along. At the end of the day, I look back and admire my basket of sparkling gorgeous jewels that add beauty to my life. It is the kindness of people that fills my basket on a regular basis. It is what keeps me going.

Leaving the cafe, hungry, lost and completely disoriented, I get whistled by a truck full of men. My life could not get any more ridiculous. Maybe my “look good when you carry a broomstick” motto has worked too well. Or maybe sleeping endlessly is the best beauty product ever. Apparently, my outer appearance does not at all reflect my fragmented inner state. This is both a blessing and a curse. I decide to appreciate the compliment, and tuck another colorful gem in my basket.

I find a bakery and buy some bread. Three blocks later, someone tells me that my purse is open and upside down. I had no idea. By now, my vision is incredibly restricted, and I have lost any sense of having a body.

I wonder how much money I have lost.

Grateful for this person, and for having bread, I put two more gems in my basket. My favorite sparkling multi-colored gem today, is the sudden realization that I have come so far with accepting a life without control, that I can now laugh at the mistakes that had me crying for three years straight.

I have learned trust, to stay in the moment, and look for the good. Where attention goes, energy flows. I place my attention on the gems in my basket at the end of the day. When it rains, look for rainbows.

Happiness depends upon gratitude for even the smallest beauties of life.

So what if I was walking down the street dropping all my money. I got bread today!

Day 3:

I intended to visit the Unitarian church service to meet people here. I can’t wake up again. Frustrated and embarrassed, I arrive just  in time for free coffee and food. I decide to forgive myself…. it’s a constant practice… over and over….  I go in anyway, and hope the man I was talking to over pasta salad didn’t notice that I picked up my fork by the wrong end… twice. My hand was gooey with salad dressing. But I have food again. I am doing this solo thing!

I have become one of those people: the people who wander into a church for free coffee and food.

Yep that is me today. This is my new life.

And I love myself anyway.

TBI living has taught me the biggest life lesson of all: to forgive myself and be compassionate with my struggles. I get so frustrated with myself, but I know that does not help me heal or thrive. I express it, let it go, and choose love and forgiveness constantly. I try to send my brain more love with every screw up. Sometimes it works.

Having a scrambled brain that can’t get anything right, you have to laugh at your imperfections and find amusement in the absurdity of life. You have no choice. 

It’s that or jump off a bridge. I choose laughter.

Like most of us, I have been driven by an intense need for perfection and belonging for my whole life. Now,  I have become so imperfect that I have finally realized that it is futile to keep striving for perfection.

I wish I had known that it was futile to try all along.

I wish I had known it was ok to relax and just be me, warts and all. Not only am I imperfect, but I write about it publicly, because I hope it gives life perspective and sets others free too.

I am at peace.  Limitation has never been so liberating.