An Education from A Brain Injured Veteran

I just watched 60 Minutes great report on brain injuries among veterans, and was particularly struck my one line. The veteran is discussing the challenges of having his brain injury be completely invisible to others. "I would rather be a single leg amputee than a brain injury survivor." "Really?!" asks the reporter incredulously.

"Really?!" I want to ask that reporter. How could that possibly be so incredulous... Unless you have no clue about what it is to live with a brain injury. The comment spotlighted the mass belief, that "if you can't see it, it can't be so bad". While losing a leg is undeniably horrifying and traumatic, if given the choice of that or a TBI, I would make the same choice as the veteran. I'll bet any TBI survivor would say the same. Sure I couldn't dance with an amputated leg, but I can't dance with a TBI either! Nor can I easily walk down a sidewalk, drive a car, remember what I did this morning, cook a meal, read a book, understand a bank statement, ride a bus, be in a crowd, sleep, go to a party or buy groceries.

What people seem to not understand is that brain injury is different from any other injury because it changes not just the content of who we are, but the context. It changes the very things we identify as our personality and our sense of self. It changes the container that we are, and in doing so, it changes every aspect of life as we have known it. Over and over I hear brain injury survivors say "I don't feel like me anymore. I feel like someone else is living my life and I miss ME." We don't get to continue our lives as "us with an issue", we are no longer "us".

Is there really anyone who would prefer to have a working leg than a working brain? It reminds me of a woman I know with a brain injury who broke her leg. She was amazed at how much attention she received because she had a cast on her leg. To her, given what she had lived through, this was no big deal. The leg would heal in a matter of months. Her brain had been injured for a decade. Every day was an act of courage to get up and try her best to function and no one noticed. Brain injury might be invisible on the outside, but it is never invisible from the inside.

I am curious, what surprises you more, the veteran's statement or the reporter's surprise?

Raising Brain Injury Awareness

March is Brain Injury Awareness Month.

Why do YOU need to know about Brain Injury? Because the doctors that you and your loved ones go to don't. That's right. They don't. Brain injury is a slippery little fish to catch and there are no medical cures, so medicine has paid little attention.

When I acquired a brain injury, my doctor of 13 years looked alarmed. "You don't look good, go home and rest," was all I heard. I could do nothing else, so rest I did. After months of rest, I could still barely open my eyes or walk. Now my doctor said "You have Post Concussive Syndrom, it is a Mild brain injury". End of conversation.

I thought "mild" meant no big deal, I'll be better in another week. "Mild" brain injury simply means you were not unconscious for over an hour. It has nothing to do with the severity of the symptoms. It is a HUGE misnomer. I think my doctor thought Mild meant mild too.

The neurologist looked at me and didn't get it either. "You are just anxious, that's why you can only think of 5 things that start with "f" in one minute." What??!!  This guy had no idea how messed up I was. End of conversation.

No resources, no help, no advice, no referrals, no rehab. Brain injury survivors are sent out on their own to figure it out....and they can't.

I have spent three years in search of medical professionals who understand. So I can tell you, they are few and far between. A second neurologist was at least honest, "If I can't operate on it, there isn't anything I can do, so I don't know much about brain injury. I have nothing to offer you." End of conversation.

My story is typical among brain injury survivors. I hear it more often than not. Doctors don't understand it. After all, we "look normal". You can't see it. What makes this fish more slippery is the survivor may not think they have a brain injury either. The brain is the instrument that assesses our well-being, and the assessment tool is broken. Even though we can't do simple things, we often think we are fine. It takes months or years for the survivor to understand their own limitations. That IS one of the symptoms.

I don't expect doctors to be super heroes and know everything about eveything. But it sure would be helpful if they knew enough to say "The are resources. There is Rehab right here in our hospital. There are support groups. You are not alone. There is help. Here is a brochure."

YOU may be the one to determine whether someone you love has a brain injury. Do not rely on your doctor to know. You are the best advocate for your family members. That is why we have Brain Injury Awareness Month.

Become aware here.

There is Magic on this Battleground of Life

Stepping out of the house and into the world alone has become like stepping onto a battleground. It requires intense focus and preparation. I know where most of the mines are now. I have learned to map out my path the day before. I have the address already mapped out on my phone. I have called to get thorough directions down to knowing which side of the street I should come out of the subway station on. I have my backup driver on alert in case I need a rescue. I leave an hour early. I put on my psychic grounding and protection, my dark glasses, my white and red tipped trekking poles.     I am going out.

I am in San Francisco living with my parents for the winter. The quest? To find better medical help than I have found in Vermont, if it exists. My first stop? San Francisco’s TBI support group. I have found the survivors to be the best resources of information and helpful doctors. So, last week, I made my first post-TBI solo trip downtown in a big city. Getting there terrified me.

It is eight stops on the subway, followed by a two block walk and then reverse it to come home. Sounds easy right? On the subway, I pull my hair down like closing window shades, blocking out as much light and movement as possible. The winning game on this battleground is to minimize stimulation. The subway is rocking, shaking my head into total disorientation, lulling me into sleep, after a few stops I realize I am in danger. I stagger off the train and rest on the platform.

It is important for me to continually elevate my symptoms a little and let them come back down to baseline. It re-teaches my brain how to find my body. It is even more important that I don’t overdo it. When I overdo it, I can’t come back. I am trapped in an absolutely terrifying experience of being a consciousness without a body, completely incapable of getting back into my body, and unable to operate it. No moving, no communicating, no clue about how to come back. A moment of this is horrifying, and it has gone on and on, taking days to return to baseline. How can I begin to describe the sheer terror of being alone and unable to find your body? My desire has been to learn to enjoy it like one would enjoy a roller coaster, only I’ve never loved roller coasters and I have never succeeded in experiencing anything less than a panic attack. From the outside no one knows. I can’t communicate or move, and people think I am calm. What an illusion.

These moments are triggered by things as simple as movement, either of my eyes or a vehicle I am in, flickering shadows and light, passing scenery, a stimulating environment like a restaurant, mall or grocery store, that I never thought twice about before.  Determined to reach my goal, I am now risking that alone, on a subway, in the city. People have other things to do beside taxi me for the rest of my life.

Being rattled on this train now, I realize the possibility of me getting too disoriented to move, endlessly riding this subway until the end of the line, going back and forth for hours, only getting more and more shaken and disoriented with each stop. The danger is real, and on this battleground I need to be hypervigilant. Resting in the subway station for ten minutes, going two more stops, getting off again. I keep my eyes closed and don’t look at anything. Finally I make it to my destination downtown. A fifteen minute has taken forty-five. I made it. I am feeling proud. I am drunk and delirious from the motion and need to rest.

The homeless men gathered on the floor of Montgomery St. station are hollering “hey pretty lady come and sit with us.”  When I pass by they get more aggressive. “Hey blind lady, blind baby, you over there, you going skiing? I wanna ski witchu!” I can’t rest here. There are multiple exits and I am grateful I have written down which side of the street to exit the station at. Precision is important. I can’t afford the stimulation of Market St. with this already overstimulated brain. I need the shortest route to brainrest.

Upstairs on Market Street, a group of very well-dressed businessmen exit a building in front of me. It has been years since this Vermont girl has seen anyone dressed like that and it catches my eye. My eye follows to the name of the building, “The Palace Hotel”. Perfect! I am going to rest in the lobby. Only this isn’t just any hotel. San Francisco’s oldest luxury hotel provides such a contrast to the hollering homeless men a moment ago. Inside these doors everyone is elegantly dressed and coiffed, and classical music is being played on a grand piano.

I have stepped into the most beautiful crystal palace I have ever seen. Happy for any place to sit and rest my brain, I have been gifted with the most delightful spot. The room is filled with palm trees, beautiful music, and glorious light pouring in from an art deco stained glass domed ceiling. So often I have noticed that it is the beauty of my senses that slowly gently return me to my body when I am disoriented. I couldn't imagine more beauty than this. After a short rest, I move on toward the support group that is about to begin.

A large loudly croaking frog greets me as I entered the Center for Assisted Living. In my TBI daze, it takes me awhile to realize that I was triggering it by my standing there. The frog’s job was to alert the blind receptionist that I was there, and that it did. The receptionist introduced me to a woman in a motorized wheelchair who led me down the hall to the TBI support group. We passed a big homemade poster on an office door that read “Thank you MediCal for getting me back on my feet so I could come to work here”. Sweet. I had never been in a place like this. The Executive Director, also blind, had a guide dog at work. I was inspired.

The support group struck my new brain like a bunch of cartoon caricatures. A plaid flannel wearing Vermonter who looked just like Santa Claus facilitated. With a big fluffy white beard and a belly that really did shake like a bowl full of jelly, he had defied all odds, surviving an aneurysm twelve years earlier. The aneurysm left him incontinent and unable to swallow, speak or stand, he had relearned it all and was still in rehab. Flirting with him was a vivacious Parisian woman. She had slipped on a wet manhole cover on the street in the rain and laying in the road, was hit by a car. She spent five years in daily rehab and now had no heat in her home and went outside in winter to get warm. They talked of Dom Perignon, caviar, escargot and as long as they both ate the garlicy escargot, sex after the group.  I kid you not. The young Filipino man who had a wife and two young kids at home had survived a stroke was as quiet as the Greek man who had been hit by a drunk driver was ready for a party.... until he fell asleep. It was the usual cast of TBI characters, with San Francisco’s international flair. You couldn’t make this up.

We talked about our stories, our recoveries, our challenges, and every TBI survivor’s favorite: compensatory strategies. Fascinatingly in common, we all have vacillated from the onset to this day, between thinking a)we had no brain injury and had nothing was wrong with us, b)we were emotional or just crazy and making this up, or c)being absolutely horrified and scared to death that something was seriously wrong. Even as Santa was being fed from a feeding tube and having his diapers changed, he thought nothing was wrong with him and didn’t understand why others were making a big deal. He swore he could walk until he fell off the rehab parallel bars so many times they stopped taking him there. Brain injury messes with one’s ability to assess oneself. The measuring stick is the exact part that is broken. TBI professionals call “lack of self awareness”. I prefer to call it helpful ignorant bliss, a perfect coping mechanism. Who could live in option C all the time and stay sane? The LSD trip-like reality of suddenly being trapped forever in a mind and body that no longer feels like yours with no escape calls for a brilliant strategy from nature like “lack of self awareness”.

Unfortunately none of them had much to offer in terms of the help I was looking for. None of them had my visual processing issues, my disorientation and dizziness, my overstimulation issues. They drove or took buses without a problem. When the florescent lights were making me intolerably jittery, tired, and unable to focus, I asked if we could turn them off and was told that was “a first”. I left feeling even more alone, a freak among freaks, stumbling through life looking for help. But now I knew where I was headed...  back to my new favorite hotel lobby a few blocks away for a rest. I was exhausted!

In the luxurious lobby surrounded by the world’s most elegant business people, I took a nap. All the men in designer suits, all the women in gorgeous dresses and heels, me with my blue jeans, dark glasses, and white and red trekking poles, sleeping in a chair. Preparing myself for the final stage of the battle, getting home. I called for a pick up at the other end of the subway. I didn’t think I would make the walk home.

Feeling so good about myself and my accomplishment so far, my hypervigilance waned. I was thinking about the characters I had met. I forgot to pull the curtains of my hair closed. I forgot to close my eyes. I suddenly realized I was getting disoriented and needed to get off the train. “Next stop, I am getting off.” It was too late. I fell asleep. Vaguely aware that a few more stops had gone by. Fighting against the lull of sleep, like I was Dorothy in the poppy field, fighting for my life now. “Come on. Stay with it. You can do this. Focus. You can’t go away. Don’t go there. Get off the train immediately. This is serious. Focus. Get off the train. Come on. Come on. Focus.” Again, I passed out and woke up a few stops later. Terrified that I might really ride this brain shaking contraption into deeper and deeper dysfunction. “Gotta get off. Come on. You can do this!”

I stumbled off the train, barely able to walk, shuffling my feet, and collapsed on the nearest bench. I am aware that a look like the broken lady and that people are staring. I am beyond caring. If only they knew how hard I was working to just ride on a subway. I close my eyes and rest. Grateful that I thought to call for a ride. I was beyond being able to pick up a phone and talk now. Feeling like a baby with shaken baby syndrome, what is it about movement that is so hard? My mother helped me into the house, and into bed, where I collapsed for the rest of the day.

My daily life has become so surreal. So full of challenge and yet so full of magic. Everyday is an adventure that I have no idea how it will turn out, I go with the flow with no ability to control life. The juxtaposition of these two vastly different worlds on this day feels surreal. The old me would have loved visiting this luxury hotel, but would never feel a part of it. The old me would have never had an opportunity to associate with the disabled on such intimate terms. I certainly would never have felt a part of that either. Yet here I was, enjoying them both, and equally at home in both worlds. Feeling like I belonged in both equally. How was this possible after spending 2 ½ isolated years feeling like I don’t belong in society anymore?

Somewhere in there, something shifted.  I am more at home with me. It doesn’t matter where I am or who I am with. I am home. I am no longer plagued with the ceaseless voices that argue my insufficiencies, and the ego that feels so separate from the group, any group. I am whole and my mind is whole. It is no longer divided into all the parts that argue with each other and judge each other. The constant judging and bickering in my head is gone. No longer do I constantly work at choosing better thoughts. No longer is “thought”, “observer of thought”, “judger of thought”, and “manipulator of thought” all happening at once all the time. That is just too much multi-tasking for this new brain. In it’s place is a slow, quiet unified voice. I am pure presence and I belong.

In a mere 48 hours, I am better.

In a mere 48 hours, I am better.

I am so delighted and astounded, I could sit with that sentence for days.

I just caught my first flu since my TBI (There’s one blessing of being isolated and avoiding crowded overstimulating places!) and once again, this TBI first (much like the post-child firsts or post-divorce firsts) shows me how much life has changed.

In the early TBI months I didn’t know what was wrong with me. My only reference for the headache, dizziness, exhaustion, fuzzy thinking I was feeling was having the flu.  My only reference for what to do was to go to bed and rest for a few days until I felt better. Only I rested and rested and rested. Months went by and I never felt better. Now I am counting years, like the slow growth of a redwood tree, and I am seeing a little improvement.

So to be over it in 48 hours? Shouting hallelujah!!! I am stunned and amazed. I used to be confused that I wasn’t over the TBI symptoms each day. I have gotten used to the fact that they improve at a SNAIL’S pace. Now I am just as confused to be over the flu so quickly. Have I forgotten that the body really does heal itself? Or am I am just always confused? I am confused about that too.

A virus used to feel hard and debilitating and no longer does. I love these markers in life that show us that we indeed have grown in some way. I find a thrill in the moments of discovery that something that used to be a challenge, no longer is. When you are running a marathon, a 5K becomes nothing. It is true, what doesn’t kill you makes you stronger. It is also true, if you want your issues to disappear, take on a bigger problem.

In a mere 48 hours, I am better.

Wow.

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