I'm Celebrating my Forth Re-Birthday and Sharing my Gifts with You!

It is four years today that I said goodbye to the life I knew.

I woke up at dawn, excited about the day, meditated, wrote, gardened, worked, and looked forward to an evening sailing lesson, never suspecting that after this day, my life would never be the same. No one knows when a traumatic brain injury will strike.

The journey has been intense. Long. Hard. Poignant.

At first, I thought I would heal this. After all, I was a healer. I had spent my life learning about every kind of healing method I could find. I was meant to heal this and teach others how. I could live with that. It gave me hope, and more importantly, it gave me purpose.

Four years later, the part of me that believes that has shrunk.  It has become a little sliver of hope that occasionally surfaces.... and then crashes even harder with the next bad day. Hope has become an unhelpful roller coaster.

Now, I focus not so much on changing this (although it is not my nature to ever stop trying or give up), but I am more focused on how to live a full life, in the present moment, even when things are not as we would want them. Because isn't there always something we which was different?

Honestly, brain injury sucks. It is the hardest, scariest hell anyone can imagine.

But it doesn't help to be thinking that all day.

What helps is to find the gifts our challenges bring us. I have searched and searched for four years for the gifts I knew were somewhere in the rubble. I believe there is always a gift, sometimes they take a LONG time to find.

As my Fourth Birthday present to myself today, I am sharing my gifts.

Gift Number One: Slowing down.
I am a snail in an SUV world. As a snail, I am closer to the rhythms of nature, and the rhythms of my own body. A snail doesn't experience as many things, but it experiences each moment of life with more depth. It isn't racing off to the next experience.

Gift Number Two: Being in the present moment.
Having to work hard to be in my body and have it function, keeps me in a timeless place of right here and now. I am no longer multitasking or distracted and my relationships are richer for it. That is pretty cool.

Gift Number Three: Grace.
What I am finding by being present in the moment, is the gift of divine grace. When we stop approaching life trying to control it with expectations and goals, and just see what each moment brings, doors open. Things happen that could never have been predicted. They often turn out better than I could have thought up myself. The series of surreal events that my life has become would be hard for most people to believe. Life has become a  fun adventure since getting out of the driver's seat.

Gift Number Four: Embracing Uniqueness & Being Self-Referential.
I have difficulty in crowds. I have difficulty reading. I have difficulty with noise or florescent lights. I avoid these things and more, and in doing so have become an island unto myself in the Lake of society. I am learning who I am without outside influences. I am forced to learn to accept being different. The truth is that I have always been "different" and tried to hide that. How many of us suppress our uniqueness and try to fit in? That is a scary thing for most of us. We fear losing love and approval. The truth is, others love us when we are loving ourselves, not when we are trying to be someone else.

Gift Number Five: Freedom from the Curse of Perfection.
As a life-long perfectionist from a family of perfectionists, I used to equate being lovable with being perfect. Yet perfection is an unattainable goal, and that constant drive takes us out of the present moment where peace and self-acceptance lie. Learning to accept all the parts of ourselves, the ones we like and the ones we don't like is the key to peace and wholeness. I can no longer even try to be perfect. Letting myself off the hook, there is the peace of surrender. I feel whole and complete in my brokenness, perhaps more than I have ever felt in my entire life.

Gift Number Six: Becoming my own best Cheerleader.
TBI is a LONG road. It isn't a marathon. It is a lifetime of back to back marathons. I won't survive if I am judging myself and beating myself up. I have trained my mind to be kind to myself, the way you would be to a four year old. After all, I am just four years old in a grown up body. I praise my brain all day. It is doing such a good job. On days like today. I can not tolerate light, noise or motion, and am in my room all day wearing dark glasses, I say "Good brain. You are doing so well. You are working so hard. You are doing your very best. I love you so much!" Repeat. Everyday. All day. Forever.

Gift Number Seven: Learning about love and kindness from people everyday.
I never knew how much a little bit of kindness could help someone in need. I never knew how many beautiful people step forward and rescue others. Wow. This just makes me cry. Y'all are beautiful you know. Thank you so much for the gift of you.

Happy Re-Birthday to Me!

Angels Are Everywhere

The ironic truth about living with a brain injury is that independence means learning to ask for help. I've learned that toughing it out in an airport and trying to get myself to the gate, never yields a good result. So I was waiting for the wheelchair attendant and hugging my mom goodbye at the curb when emotions came pouring out in a torrential river of tears.

I had been living with my parents for five months this winter, and now I was going home. Being surrounded by family is like having a safety net beneath us as we swing on this crazy trapeze of life. With family around, when I had a vision therapy appointment, and the paratransit vans didn’t show up, I had a ride. When my morning brain-exercise puzzles left me stumped, dad was there to patiently help me figure them out. When my daily 5pm exhaustion hit, and I was too tired to eat dinner, mom's cooking saved me. But now I was leaving the safety net, plunging back out into the world on my own. TBI has been turned my life into a dangerous high trapeze, and living on my own, I fly without a safety net. 

I had been a Daughter for five months, now I had to go home to be a Mother. I wasn’t sure how, and I was up all night wondering. So when the mess of tears met me at the curb, I gave myself permission to loose it. I didn’t care who was looking. I left shame behind. This was too big to suppress, too big to care, and I had had too little sleep. I’ve learned that by letting feelings move through me, they do not last. When I let embarrassment stop that process, I am still dealing with the feelings for a long time. It works much better to feel your feelings and it that area, disinhibition (life without filters) is quite helpful.

When I say I've learned to ask for help, I mean not only from the human world, but from the spiritual world as well. I prayed with all my heart, as I sat waiting, “Please watch over me. I don’t know how to do this and I am scared. Please send me help.Send me lots of help. Send me some angels.Thank you, thank you, thank you!”

A moment later, a tiny Filipina woman, arrived with my wheelchair. Her badge told me her name. Angel. I did a double take. She smiled as she helped me with my bags, not at all fazed by my tears. “Crazy day we are having! 627 wheelchair requests, even my boss is pushing wheelchairs today!” she laughed.

She zipped me through the whirling, swirling hustle and bustle of the airport that amplifies the whirling and and swirling always in my head, making me completely disoriented and nauseous. I closed my eyes behind my dark glasses and worked to stay calm. Angel unhooked the ropes of the security line and started singing “I Did It My Way!” loudly. This was getting more surreal. She hollered at a passenger in the security line leaning on a cane. “Hey, you! You come with me. You don't have to wait. I’ll get you past this line.” Then someone with crutches, and then another cane. Belting out in song “I've lived a life that's full. I traveled each and every highway, and more, much more than this, I DID IT MY WAY!”, Angel pushed my wheelchair, with a gaggle of handicapped people following us to the security agent. She was the Pied-Piper of SFO's disabled. What a sight we must have been!

She delivered me, eyes shut, to he TSA agent, Angel Number Two. “I can do the pat down right in the chair sweetheart. You don’t have to stand up. Does it bother you to lift your legs?” “No.” “Does it bother you to lift your arms?” “No.” “Does it bother you to tilt your head?” “Yes.” “It hurts to tilt your head?” I opened my eyes to look at her. “No, it doesn’t hurt. It makes me more dizzy and disoriented and seasick. I don’t move my eyes or my head.” She looked confused. She had never heard that one. “I have a brain injury” I explained.

She got silent and STILL, the way people often do when you say “brain injury”. They are jolted out of their business-as-usual mode. I can hear their minds grow dead quiet to match mine. She started patting down my legs. “You know, I see these young kids come through here everyday, and they are amazing. They have the best attitude. They inspire me….. Now I am going to use the backs of my hands to pat down sensitive areas….. You are just like them. You are going to kick this thing.” She stopped and looked at me. “You are going to come skipping through this machine next year, yes you are!…. Now let me run my gloves through the scanner." With both of her hands, she held my hand, lowered her face a few inches from mine, and looked right into my eyes. "You are going to beat this! I can just feel it! I just know you are. I believe in you! You are my hero!”.

The TSA agent of all people, had just pierced my heart. Any composure I had regained was completely lost. The floodgates re-opened and there was no stopping them. How did a TSA agent become a therapist and cheerleader for every stranger going through her line? Who are these amazing people?

Tears streaming down my cheeks now, I was being wheeled through the airport by the tiny woman with a huge heart singing songs, and yelling out “Magandang araw!” (Beautiful day!) as she passed her co-workers. 

My daily life is surreal. I started laughing at how my prayers were already being answered. The world was full of angels. I never knew it like I do now.

Angel delivered me to the plane, handing me off to the flight attendant, Angel Number Three. “Do you have any seats closer to the front?” I asked. “I forgot to ask earlier and I don’t tolerate motion well.” The difference between the front and the back of the plane was the difference between a day on the couch recovering or a week on the couch recovering. “Sorry, the flight is full.” My heart sunk. I knew I was buckling myself into Hell. I gulped.

"Can I ask for your help then?" I continued, "I have a brain injury. If there is any turbulence, my brain does not know where my body is space or which way is up. I will be completely out of my body and disoriented.” Now, she slipped into that Quiet Still Place and stopped in her tracks. 

“I only have a half hour layover and when we arrive, I will not know where my body is or how to move it. I will likely not be able to move or talk. Can you please take me by the arm and get me to the wheelchair and tell the wheelchair attendant that I am connecting to Burlington?”. “I will keep my eye on you,” she promised.

I am so grateful that after almost four years, I am learning this new body. I know the drill. I know what I am capable of and what I am not capable of. I am learning how to ask for help and how to work with the new operating system. 

Most of all, I am grateful that I now know I will recover to baseline after the really bad moments, and that makes all the difference between peaceful acceptance and unspeakable terror. 

Being able to first, understand my body; second, understand what it needed; third, not be embarrassed; fourth, ask for help; fifth, not be an anxiety attack about all of it; that conversation spelled major V-I-C-T-O-R-Y!

The plane shook and bounced across the country. I must have been gripping the armrest pretty hard because the man next to me said “I get nervous too.” I couldn’t talk to respond. “You have no idea!” I wished I could say.

I used to get nervous in turbulence, but this was a different kind of fear. This was not anxiety based upon a thought about what might happen. This was the sheer terror of what was happening, like free-falling on a roller coaster you can’t get off of. Like my life depended on it, I stared unblinking at a spot in front of me for my only sense of physical orientation. I didn’t have time to think or care about the plane falling out of the sky anymore, I was too busy surviving each second of this 5 1/2 hour flight. 

This brain injured experience puts me in the present moment all the time. While everyone else is calming reading magazines and watching movies, it takes tremendous focus and concentration, just being in my body.

The flight attendant guided me off the plane as promised, saying “You are going to be just fine!”, before giving me a huge hug. Who gets a hug good-bye from the flight attendant? I did twice this winter.... and an offer to be a free flying companion.

Everywhere I go, there is an amazing display of kindness from strangers. What makes human beings reach out with so much kindness and compassion to people do not know and will never see again? I am so moved by them. They have blown the ceiling off my reality about what is possible in human kindness. They teach me to be as kind as they are. I want to be the strangers I meet. I want to be like that TSA agent.

It is this kindness that makes the world so beautiful and lifts us up when we are down. We don’t hear about it on the news, in fact, we don’t hear about it at all. We pay little attention to it. Yet is there any greater purpose to life?

I am privileged to see a side of humanity that I have never seen before. Never did I think I would be pushed through airports in a wheelchair. That position puts me on the receiving end of random acts of compassion on a regular basis. Back when I was busy racing around on my hamster wheel, priding myself on my independence, I didn’t know this kindness existed; not in the deep profound way I know it now. So I am here to tell you.

Like a Special Ambassador from some foreign place outside of human culture, I am here to report back to you, that people are really beautiful. That life is beautiful, and I am so lucky to be given this vantage point. 

It comes to all of us when we slow down and find the courage to show vulnerability and our humanness. As Brene Brown says, "Perhaps vulnerability is the truest measure of courage".

There is some profound power found in living life in the raw, in not hiding our weaknesses out of shame. It is the place that connects us, human heart to human heart. 

The New Safety Net is here.

It lies in those random members of our human family that show up.

Living Like a Refugee

I have become a winter refugee.

When my TBI first met winter four years ago, the snowfall made my head swirl so badly I could barely walk in my house. Walking outside on the slippery white stuff was completely impossible. My head swirled, my legs stiffened up, my brain unsure of where the ground was. After wall-surfing in the house for a few weeks, with the shades closed getting more dizzy and depressed, I realized I had to get out of here. This stress was not a recipe for healing.

I have never been a big fan of Vermont winters. I grew up in San Francisco, and living in the snow has always felt like a foreign country to me. Five months of it feels like living on a foreign planet. I have never felt comfortable walking on icy sidewalks. So I am not upset about missing out on the winter magic, that is a blessing. But I am upset about leaving my youngest child for a large chunk of the year. That is a painful, heart-wrenching loss.

Every year I question it. Can I stay? Am I just being a winter wimp? I feel guilty. Every year I get a few days of snow to re-confirm that I have no choice. What is it about the white stuff? The ground is white, the sky is white, and I start to stutter and stumble like I did four years ago; my son urging me "Mom, you have to go. I will be ok. Just go!".

This winter, I was determined to test myself and walk a half mile home. I had my trekking poles; I should have been able. Each block got harder and harder. Exhausted, slowing to a snail's pace, and unable to see well, with my visual field narrowing to a pinhole, I refused to give up. Finally only two blocks from my destination, I could go no farther. My brain was so scrambled, I could barely figure out how to call my daughter for help. She found me hugging the street post for dear life, unable to move or figure out where my legs were, and done for the day. "Where are my legs?" was all I could mumble before I fell asleep. I am not just a winter wimp. Every brain injury is different. This is mine.

My theory is that my brain is already working so hard to understand where my body is in space, that winter boots don't offer enough tactile information, while whiteness doesn't offer enough visual information. It is the same in a white room, bathtub, or a bright sidewalk. My broken optic nerve can't translate the visual information to my brain and it is as if I can't see. My brain gets even more strained and every other function just goes to pieces. I do much better in vibrant colors of summer.

My neuroscientist cousin in France immediately understood it and learned about this in her training, but in this country I am treated like I am making this up because I don't like winter. I would love to see the documentation on this and have been unable to find it. Does anyone have it? If so, please add it to the comments below for everyone to share.

It is a strange life I am living. I rent out my home for the winter, and spread myself among my parents and whoever will adopt me. I keep moving, trying not to overburden anyone. I would like to go home. Enough of living out of a suitcase like a gypsy, waiting for it to be safe to return to my life! And what do I do in the long term? Move? This does not appear to be improving.

This brain injury has taught me to take care of myself at a whole new level. It has taught me that nothing, nothing, NOTHING, is more important than health...  which includes emotional health and happiness. Sometimes that means making courageous and unconventional choices with our lives.

Marking Time

It is New Year's Day. (At least it was when I started writing this, so I had better get it out while it is still January!)

Every year of my adult life, I have spent the new year refecting upon the growth of the past year and setting intentions for the upcoming year. At least I did that every year until a TBI twisted my head on differently.

In the chaotic swirl of a brain injured mind, this becomes irrelevant or impossible. Irrelevant because because we have lost a linear sense of time. Time is just now. There is just this eternal moment of NOW. Impossible because when I look back on a year, cutting through the confusing swirl of jumbled memories and making sense or order of them, is like trying to reflect upon the color of a fruit flies eyes while watching a swarm of 500 fruit flies buzz around you. We just can't focus long enough or filter what is important and what isn't.

My New Year's reflections have been missing in a fog for these last three years. So when I sat down to reflect this year, I got a surprise! In another marker that the fog is lifting, I can actually find a theme to last year. 2013. It was my first year of living independently with a brain injury.

I don't know what is more exciting, that I survived a year of independence or that I found the clarity to notice.

2013 truly was a big, scary year, and I made it over this hurdle.

I was terrified to be on my own. How do you survive, let along thrive if you can't drive, ride a bus or train, look to cross a street, walk more than a mile, and have fog for a brain? I live alone with my son, and my family lives 3000 miles across the country.

Everyone I know with a brain injury lives with a spouse or family. I have learned that that safety net makes all the difference between thriving and flailing. I can look and feel downright normal when I am tagging along with someone else who can drive.

By myself, everything feels overwhelming, failures build on each other, I barely leave my house, and struggle with anxiety and depression. Life is simplified to the barest necessities. Getting food is such a challenge, I mostly skip it. You could say it was a failure year because I certainly didn't thrive, or a success year because I survived and am still alive, and I have lost all my TBI weight gain. Maybe the judgement isn't the important part.

Now I know I can survive on my own even though it is super hard. That information is invaluable, that is the important part. Learning about ourselves and accepting ourselves is the important part, not the judgement. Maybe judgement is over-rated.

It's funny how at the end of the year or the end of the day, we look back and judge ourselves. How often do we look at all we did not accomplish in our day? How often do we focus on our failures and miss our accomplishments?

I have learned to count my accomplishments and celebrate every little one. I intentionally focus on what I did do more than what I didn't do, and where I succeeded more than where I failed. Like taking a good photo, life is all about what you focus on. Focus on what lifts your spirits! I am calling 2013 a success.


P.S.  Since I've got my New Year's mojo back, I am also setting an intention for 2014. I hear-by publicly declare that I will have a first draft of my book, "Brainstormed, How I Lost My Mind, and Found My Heart", done by June. It is my story mixed with educational information. It has brain injury, romance, and travel. Think Eat, Pray, Love meets My Stroke of Insight. I have an unbelievable story, the book is coming along, and it is going to be good!
http://www.brainstormedthebook.com/