Photo Credit: Louise Mathewson

A couple days after I came out of a coma, I was transferred by ambulance to a rehab center. The Occupational Therapist (O.T.) responsible for teaching me daily care routines, took me to the shower. She told me that I would be taking my first shower. I wondered how this would work. I could hardly remember what a shower was like, and the rehab shower room was a big unknown to me.

First, she showed me where to put my clothes. Then she showed me how to get into the shower, how the soap worked, and how to get out. She explained that she would be there to hand me a towel when I was done washing. She told me that she would remain in the room so she could help me if I lost my balance or had a problem.

This meant I was going to have to undress in her presence to get into the shower. Now, I am a good Catholic girl raised in the 50’s and 60’s. Modesty is key to who I am. Undressing in front of, even another woman, younger than me, was not in my toolbox or memory bank. I NEVER undressed in front of people, EVER.

I hadn’t lost this part of myself. I could feel her presence inside of me. Language and the ability to assert myself and express my needs, however, were left at the scene of the accident. I had to do what the O.T. said, even though I was so very uncomfortable, mortified really. I had no choice. I was powerless without language. So I gave in and suffered mortification in silence, instead.

I couldn’t talk about it. I couldn’t ask to shower alone. I couldn’t tell her how I needed privacy. I couldn't remember my own history. If I could have expressed my discomfort she may have been able to come up with another solution that was still safe. When I think of that day, I feel so violated. 

The guiding principle for medical professionals is "First do no harm." However, when a patient is brought in to rehab for TBI, medical personnel don't even consider that a patient may have a history of trauma. In rehab we try to recover from a trauma, but old traumas can be triggered. Questions could be put to the accompanying relative or friend about the patient's trauma history. Rehab for TBI involves mental, as well as physical healing. Triggering of old traumas while in rehab for a brain injury, results in harm to the patient's psyche.

Sadly, we are defined by a single facet, a brain injury. Our back stories are left out of the picture. And yet, knowing a patient's back story could help in treatment and recovery. It could prevent re-traumatizing a patient, in the way it happened to me.

Share on Facebook

Tweet

Google+

It’s fall, and once again, I feel like I’m falling down a rabbit hole into the dark. This is the season of cooler temps in Florida. So I can get outside much more in the middle of the day. That should be good. However, I still feel like I’m entering a dark hole. Maybe it's my moody injured brain, maybe it's age, maybe...maybe...maybe....

In Chicago, (where I grew up) this is the season of warm, lively, feel-good colors. We moved from Minneapolis two years ago. There I used to take a daily walk on fall mornings. This time of year crimsons, reds, oranges, and golds just glowed on the trees as I walked down the street. I am sad that fall colors are nowhere to be seen in Florida. The adventure of a new landscape is wearing off now. Lucky me, I get to see fall colors at least on Facebook.

Days are shorter now, even in Florida. I talked to a couple people this week who also feel lower in mood. They also both reported having low moods every fall. Just last week, I read an article that said sensitive people who find themselves feeling low this season, are in tune with the energy of the season. (Oh my gosh, how sensitive I am after a traumatic brain injury!) Nature winds down as it prepares for dormancy.  Well, my energy is winding down too, and I find myself more reflective about another year of my life.

As I thought about the beautiful colors up north this time of year, I challenged myself to remember the gifts in my life of this past year.

This year holds memories for me of travel in February, March, April, May, June, July, and September. I got to see family, and to reconnect with a dear cousin in Chicago, who I haven't seen in 30 years! Then I got to see old friends and family in Chicago and Minnesota, and friends in Boulder. I also got to travel to New York and see both grandsons for their birthdays! My daughter and her family came down over spring break. What fun to plan ocean activities for the boys! We also went to Key West to see my son, (on a mini-sabbatical), and his wife, and adorable Chiweenie, Angel. She is quite the angel!  Key West was quite wonderful to see! There my husband and I were introduced to key deer! Magical creatures!

In September, I was able to attend my 50th high school reunion at Oakbrook Hilton Resort. I saw old classmates I haven't seen since graduation!  What a thrill to reconnect with those who knew me back when...! It was life-changing!

                           Photo Credit: Mary Lehmann

However, I don’t miss the cold. I don’t miss the long winters. I don’t miss snow...much. I don’t miss very short days. I don’t miss being inside for 6 months of the year in Minneapolis. I don't miss slushy parking lots. I don’t miss driving in the snow. I don’t miss my fear of slipping on ice. I don’t miss skidding to a stop. And I don’t miss feeling trapped inside, one single bit.

I do miss autumn walks on sunny days. I miss seeing a colorful array of leaves dressing the trees. I miss leaves decorating the grass and sidewalks. I miss hearing them crunch underfoot. I miss the crisp fall air. I miss wearing layers of fleece. And I miss lighting our fireplace.

I miss the smell of burning leaves from when I was a child. I miss raking leaves with our kids to jump on and roll in. I miss making soups and stews for dinners. I miss wrapping up in a blanket in front of the fireplace, and watching a good movie with my husband.

I miss my kids, a whole lot. Now my tears start. The rabbit hole is a good place to let tears fall.

What does the fall season mean for you? 

Share on Facebook

Tweet

Google+

I lost a sense of safety in the world, trust in life, executive skills, cognitive skills, balance, ability to write prose, short term and some long term memory after a traumatic brain injury (TBI). I thought I lost me.

Then one day I was sitting at Barnes and Noble, while my iPod delivered the music of “Creative Mind” by Jeffrey Thompson to my brain. That music always improved my mood. Beside me was my notebook, and a Starbucks coffee, with 2 pumps of chocolate and coconut milk, as I wrote with my favorite pen.

l looked up and saw a little old lady with sparkly blue eyes framed by soft, silvery curls. When she saw me, she smiled such a delightful smile, I couldn’t help but let my eyes linger with hers and share a smile.

We connected through our smiles, unaware of each other’s life events and traumas, religious preference, education, or political views.  We were two women, one an elder, and me young enough to be her daughter.

One afternoon many years ago, I said a few words to my mother’s housekeeper/sittter after school. Her name was Pearl, a fitting name for a treasure of a lady.

I was a skinny 13 year old girl in an troubled home, the eldest of 4 with the responsibility of an adult weighing heavily on her shoulders. As Pearl stood in her flowered housedress circa 1960’s and folded towels on the dining table, she said to me, “Louise, you smile with your eyes.”

The picture Pearl’s words brought to mind along with her loving voice, gave me an image of myself much different than I was getting at home.

After a brain injury, many days it was hard to smile. The injury left me with mood issues from lack of blood flow to my limbic system which govern moods. When I shared a smile with that lovely lady in the bookstore, I remembered the day Pearl provided a clean mirror for me. I thank the angels that this memory of Pearl was not left at the scene of the accident.

What memory helps you through hard times?

Share on Facebook

Tweet

Google+

Photo credit: Louise Mathewson

At the end of May, along with the rest of the world, I learned of Beau Biden's death at age 46, from brain cancer.  I was devastated.  As a parent myself of one who will turn 45 this summer, my heart broke for Beau's father, Joe Biden.  It's been a month now, but I can't forget when I see him. 

At first, shock made me keep repeating the headline as I tried to get my mind around what it meant for Beau's children, wife, father and family members.  And then I thought of what it means for all parents who have lost a child.

The next morning, as I watched the Today Show, I saw clips of Joe from just a few weeks prior to Beau's death.  As Beau's father spoke of how proud he was of his son, a river of meaning rolled down my cheeks in tears.  Joe Biden had lost his oldest child, and now, his second child to premature death.

Photo Credit: Louise Mathewson

Years ago when I was trained to facilitate children's support groups, I learned one of the greatest losses for us as human beings is the loss of a child.  Children hold a parent's dreams for the future of the world.  Children are forever becoming, and adding to our experience of life in this world. Children are our most precious resource.  As Vice President of the United States, Joe is on the international stage.  I suspect that every parent who has lost a child is now remembering their own loss.  

In the wake of Beau's death,  many of our own losses come back to mind.  I remembered the tragedy of my mother's death, which I will write more about in another blog.  I remembered the death of my father, my grandmother, and the deaths of friends' children. 

As a parent I can only imagine being in Joe's shoes and how I would feel if I lost either of my children.  Children aren't supposed to die before their parents.  It breaks tradition and the natural cycle of life.  The loss of dreams held in one's child when they die is so profound, there are hardly words to express, only tears, or howls and anger.  And now a man is on the world stage with his grief.  How will we as a nation support this man, I wonder? 

As a survivor of brain injury, I feel so much more deeply.  My empathy has expanded.  A neuro-nurse told my family that brain injury magnifies personality traits, so be prepared.  I felt things deeply before TBI, but now there are hardly words for how deep my well of feelings is.  My heart hurts once more, and tears flow when I pause to think of what this means for Joe Biden, and all parents who have lost or will lose a child.   

I see Joe today, not as our Vice-President, not as a Democrat, but as a parent like me, who has lost his dreams of seeing his eldest child mature and make an even bigger mark on this world than he has made, which is what made Joe so proud of Beau.  Beau's becoming was interrupted. 

Not every brain injury survivor has as easy acess to feelings as I do.  I think it is a blessing of TBI for me, that I can feel so deeply about another's loss.  In this moment, I put politics and personality aside and see the man Joe, who loved his son.  I too am a parent who, like Joe and most parents, loves her daughter and son firecely.

Share on Facebook

Tweet

Google+

In honor of Brain Injury Awareness month I wrote a Loving Kindness Meditation for survivors and their families. I hope you find inspiration, joy and hope in reading it.  A suggestion: copy and post it so you can say it for yourself every day or at least a couple days every week.

 Photo Credit: Louise Mathewson 

Loving Kindness Meditation

for Survivors of Brain Injury

May I regain health after suffering a trauma.

May I be safe wherever I am in the world.

May I live at ease with my new transforming self.

May I always find my way on the new roads I travel.

May I find balance to calm my nervous system.

May I make peace with the critic in my mind.

May I find sparks to light my memory.

May I find the stars that guide me in the dark of night.

May I find lighthouses and be calm in a storm of grief.

May I find wonder to guide me on my new journey.

Share on Facebook

Tweet

Google+

It's a special day today, 1/22/13!  It is now ten years after a day that changed my life in ways I could never have imagined, even if I used all my psychic intuition. The date held a kind of message, like getting ready for take off.  1, 22, 3 - you can imagine what numerologists might have to say about a sequence of numbers like that!

Every January for the last few years we have come to Siesta Key and stayed in a condo right on the ocean, where every day I got to walk the shores of the ocean, while letting the waves play with my feet!   Oh the joy, on a sunny day, getting to feel the medicine of the ocean right on my body, as every so often, a wave jumps up on my calves like an eager puppy!

In past years, I have often felt like I hadn't earned this treat. But this year, I had an epiphany as I reflected that a special anniversary date was on the horizon for me, with all the color of a glorious sunset. This year, in the two weeks before, I felt an incredible joy and gratefulness that we get to celebrate every year with the ocean at our sides, that I came back to life, in a sense resurrected, after being so close to death.

So this year, I plan to celebrate that after being so near death, I am alive, able to enjoy my two wonderful little grandsons, watch my children continue to grow in adulthood, and age with my husband at my side while enjoying life, the ocean, writing, and meeting new people!! And I have a new book out, a memoir in poetry, "A Life Interrupted: Living with Brain Injury!"  I never planned to write a book, but then, I didn't plan on a traumatic brain injury either.

However, a couple days ago, forgetting that today was THE day, I woke with a feeling of lead in my veins.   My arms, legs and body felt very heavy, reminiscent of the waves of depression that are often part of my healing journey.  At first, I was confused, because I didn't feel sad at all.

Then I asked, "what's the date?"   I was a little worried that I had missed my anniversary. When I realized the anniversary was still two days off, I knew my body was remembering the trauma.  A few tears clouded my eyes, but no rivers, as in years past.  Yes, a memory that will always be a part of my life, a memory that I do not wish to discard, but rather befriend and accept.  There are treasures in this experience that have changed my life hugely!   One of those treasures is that I now write poetry, and have a book.  I know that writing, especially poetry, which gets at the heart of an experience, healed my broken heart!

I bought this pin for my family, who suffered the most while I was in the peace of a coma.

You can get one or similar ones at zazzle.com.

Yes!  I, too, love someone with a traumatic brain injury - ME!!!

Even though I may still have ups and downs, the ride is much less bumpy than it was in the early years.   I've worked hard to get here, and you can too! What is the hardest part for you? Have you tried writing?

Have you seen “The Life of Pi”?   WOW!!!   As I watched it, I thought "this is the story of my journey with grief after TBI!!"

"The Life of Pi" is a story about a boy who survives a disaster on the ocean and is thrown into an epic journey - alone, and at sea.  Life after TBI for me was, without a doubt, an epic journey, alone, into a frightening unknown world!  Pi loses his family in the shipwreck.  I lost the family of cells and neurons that made up who I thought I was. Gone, lost at sea, I wondered where the old me was, how was I going to survive without her gifts and abilities.  Some cells died, and some, I learned later, had become “couch potatoes” and just needed some oxygen, rebalancing, recuperation and exercise to get moving again.

For Pi, life was filled with the promise of a new life in America as he boarded a ship with his family. Suddenly, there was a storm and the ship was wrecked at sea.  My life was filled with the promise of a new life with an impending move.  Then suddenly, our car was wrecked on black ice in beautiful Boulder, CO. 

There he is alone, left to fend for himself on a life raft in the company ofa hyena, an orangutan, an injured zebra and a Bengal tiger. Two months after being released from the hospital, after moving to a new state, my husband went to work in downtown Chicago, 40 miles from where we lived.  I was left alone, with no practitioners, in a new neighborhood, to fend for myself in the company of primal energies and a damaged brain.

Pi’s journey is a metaphor for my life following a traumatic brain injury in a car accident.  I felt so alone in an ocean of grief.  Inwardly, I battled a tiger of anger, a sea of fear, confusion and shame at what I could no longer do, with hyenas clawing the hurt, while I built a life raft.  That life raft was writing poetry.  Poetry allowed me to wade the waves of grief, but to contain them, like being in a boat on a big ocean.  Poetry helped me express deep sorrow over my losses.   Poetry is medicine because it gets to the heart of the matter.  The act of writing, where I could tell the story of my journey through a raging ocean of feelings was my lifeline.

Like Pi I journeyed into myself, I journeyed to survive and ultimately, I journeyed with hope to a new faith in myself.

A traumatic brain injury is an experience that is hard to understand unlessyou have lived   inside it.  Many of us look so normal tooutsiders.  I had to come to terms with a new life, inside an injuredbrain. This new life was not in my plans. My dreams had not included losing myexcellent memory, losing my planning, organization, motivation and initiation,also known as executive skills,  or losing my ability to think, and process auditory and visual information. And unbelievable fatigue to go along with big losses!

Thrown into a journey of epic proportions that interrupted my life, I found life with a new me, one composed of the essence of the old me, with variations on the original score.  At the end of the journey, like Pi, I found myself.  And I like her!  

"The Life of PI!"  is a movie that can teach us all, about survival through the hardest of times.