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.

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Photo Credit: Louise Mathewson

I opened my “Ennea Thought of the Day” and found a pleasant surprise today! In case you are interested, https://www.enneagraminstitute.com" target="_blank">Enneagram is a system of spiritual psychology based on an ancient Sufi typology of nine personality types that help in understanding oneself. If you want to know more about it, a link is above or you can search for a teacher in your area.

Those who know me well know I love learning about all things psychology, psyche, and spirit. I have studied the enneagram informally for many years, starting when I went to Loyola in Chicago. I was introduced to it there in my Master’s program on spirituality. I’ve always wanted to learn more about me, so I can better understand myself. And, so I can give myself some compassion as I travel through this thing called life.  

Like most people I’ve had a few traumas, actually more than anyone should have. A trauma makes it hard for us to grow beyond survival mode, to fully become ourselves and to give back to the world. An injury to my brain was a trauma that took me to a place of grief that is almost beyond words.

When I was still in a coma, my family was told by the neuro nurse that when I came out of the coma, my idiosyncrasies would be exaggerated. I wonder what they thought of that! On the https://www.enneagraminstitute.com" target="_blank">Enneagram, I am a six, so that means my fears were intensified, or magnified by that shock to my brain. Sometimes I feel like fear rules my life, and I don’t like it one single bit! On the other hand, it helps me avoid dangerous situations and guides me in daily life.  And a healthy dose of fear can be a sign of great wisdom.

I am fascinated by this system developed so long ago by people who hadn’t yet built skyscrapers or flown airplanes. They just ate, slept, hunted, and lived! Life was simple, so they had time to consider things of the spirit.

Today’s “https://www.enneagraminstitute.com" target="_blank">Ennea thought" told me that Robert Kennedy, Tom Hanks, Julia Roberts and Princess Diana are also sixes! What delighted me is that I like these famous people, I mean really like them! I don’t remember much about Robert Kennedy, since I was raising kids back when he was in the news. He must have liked children though, since he had so many. I share a love of children with Robert Kennedy.

Princess Diana was a model for me of battling her demons. And then she used the wisdom she gained from attending to her wounds. She showed compassion for the aged, for children and for those injured by land-mines. There is no queston how much Diana loved her boys! She also visited Mother Teresa’s hospice for the sick and dying, which gave me a sense of awe. I'm not sure I could have done that.

Photo credit: Louise Mathewson  (This picture reminds me of Diana's love for her boys!)

Tom Hanks and Julia Roberts are actors that I just love! I really respect them for their acting skills, for their love of family, and for their commitment to our world and its people. They are both deeply spiritual people. I love when they smile I can see a twinkle in their eyes. They both have a delightful sense of humor, smile easily and  they protect their privacy.  Neither has a huge ego, like someone I know. In spite of their fears, they have built amazing careers in the movies.

How do you handle fear in your life? One of these days, I'll tell you how I handle mine.

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I was asked in an interview, “What is the hardest thing about a brain injury?”  “An excellent question,” I said.  In eleven years, no one has ever asked me that, at least, as far as I can remember.  In fact, I look and sound so good, most people think I am perfectly normal.  

My answer was that people don't see how hard some things are for me, like my family expects I’ll go to big family gatherings like I’ve always done, travel like I've always done.   They don’t realize how all the stimulation affects my nervous system and tires me out, can affect my sleep, and create a mood that is so not fun.  Large gatherings amp up my nervous system, when it’s already amped up way too high.  They can't see inside my brain.  They expect me to do what they are doing, because I look so good and because they all love me.  My answer to "what is the hardest thing" was what came to mind at that moment.   Today or tomorrow my answer might be different.  

So here I go with three of today’s hardest things about brain injury.

• Making decisions is so hard for me.  My confidence has shrunk to mostly low tide, with rare high tides because my processor got whacked.  Processing information, remembering and thinking of all the aspects of a decision, is not a strong suit for me any longer. I think back to decisions I have made in the eleven years post-injury and cringe.  “How did I or could I have made that decision,” I wonder to myself silently.  Every decision seems like it could have consequences that I will regret, so I often freeze up or have to ask my husband what he thinks, which makes me feel very dependent, which doesn't feel good at all.   I was used to being able to depend on myself for most things.   For instance, how many times have I gone over this blog post looking for errors, checking if I said what I want to say.  You don't want to know!!
• Receptive aphasia - yep, big word, but not being able to understand (or misunderstanding) when someone asks a question, not being able to understand movies, TV shows, some issue in the news; having to ask for help in understanding normal English is so horribly embarrassing.
• Fear - of going outside my circle of comfort. That makes my world much smaller and for someone who likes a little adventure in her life, it’s hard to foresee and then to make preparations to ease any anxiety that may present itself in any situation.

So I suppose it depends on the day which thing is more troubling. I try to keep my life simple. Now I have to live different and stretch my circle gently, not take on too much, or stretch my circle too wide. One more thing, oh darn, this is the ending paragraph, so stay tuned for more hard things about #braininjury.

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Unable to get myself to write two years after the accident, even after some healing had happened, really scared me.  I knew writing would help in healing and I had been published several times before the accident.  I began to wonder if terror was locked in the vault of my being.  

As I thought it over, I realized I had no key to unlock the door to whatever feelings lurked inside me. I also knew there was no way to learn what messages they might hold for me, unless I found a way to get behind that door.  One day I saw an ad in a writing newsletter for a writing mentor and I began to have hope.  Having someone by my side as I opened the door to grief over what I had lost and how my life had been changed might be my way back to the light.   

Once I opened the door, with her help, I saw a monster that, if let out of the cage, would swallow me up whole and I would die.  The loss of the self that I had grown to know over 55 years was huge.  What I thought I could do, my dreams, energy, memories, were gone or filled with holes.  I was no longer able to depend on myself the way I had. I had to depend on others to get me through sometimes simple daily things, like how to get to the grocery store, where things were in the kitchen, how to write a check, how to make change, and talk to servicemen on the phone.  

The list of things I couldn’t do by myself any more was endless.  Grief about the losses of cognition from my brain injury felt very deep, almost like an ocean.   I couldn't think on my feet because my processor was so freakin' slow, I could hardly process information as people spoke, especially abstract concepts.  I was lost in a big, wide, scary world, where people thought I looked and sounded just fine.

I was so humiliated and embarrassed. I didn’t understand that relearning things would be so difficult, take so long, and then could be forgotten in an instant. It made me so angry. I got so frustrated that I couldn’t remember how to change the vacuum bag.  My solution was to not vacuum.  Then I didn't have to face how it felt to not remember how to do something I had done for years and taught my kids how to do. I lived in such deep shame, that no one even knew about - shame because I couldn’t function the way I had, the way everyone else did.

I couldn't find words to tell about the monster of grief that now lived in my life.  Often, I would be feeling OK, until I would suddenly start to sob.   I would wonder what triggered my tears, be so confused about who this person living inside me was, and wonder if I would ever get over it.  

As I healed, I re-learned to use the computer, and was able to sit longer at the desk.  I began to do some research. Gradually I found books, information online, all of which helped me begin to understand more about what I was feeling, the significance of the losses.

Chronic grief, grief that might not ever leave me, had become my constant companion.   I felt like I lived in a dark cloud that I dare not tell people about.  A psychiatrist, who had worked at the Centre for Neuroskills in CA, a highly regarded institute for brain injuries, explained to me that the injury would bring up and exaggerate old grief even though I had worked on it.  

Ah, I was being given an opportunity to re-examine the past once again!  I was so NOT excited about going over those old traumas I thought I had worked so hard to excise from my being.  I just wanted to get on with life and live my dreams.   How to get back to life was a question that plagued me.

Writing became my lifeline!   It helped me get the grief out of my head and onto paper, using metaphors and images that broke open the feelings so I could find the treasure that this trauma held for me.  Transformation began for me, through the medicine of writng poetry!!

OK, I’m gonna start a blog. I’ve thought so long and hard about doing this.  Always the decision came back to - Yikes! I’ll be soooo out of the closet - there’s a story about me being born in a closet - I'll get to that in another post. It’s kind of like going on stage, in a virtual manner. There’s another story about being on a stage when I was 5 - that's later too. I am an introvert of the highest order! However, I have a book coming out or maybe I have given birth to a book, yes, even in my 60’s I can give birth. Who knew?!! And when one gives birth, the birth deserves to be acknowledged, celebrated in some way, cuddled and coddled, presented to the world, nourished and nurtured, you know what I mean. So here I am!   

A Life Interrupted: Living with Brain Injury, published by the amazing and wonderful Peggy Elam, founder of Pearlsong Press, is now a present to the world!  It was an early birth, since it was actually due October 1, 2012, but came out September 16th.

Here’s how it all started....I was in a car accident, hit my head hard on the dashboard, which translated into a severe brain injury, traumatic for my family who weren’t sure if I would make it or be a vegetable.  Traumatic for me when I realized that I had lost something very precious.  I was peacefully asleep in a coma for 5 days and in the ICU about 10 days.  A year and a half later, as I recuperated and could actually write more than chicken-scratch, I found I just couldn’t get myelf to write.  I just couldn’t pick up a pen and even pour an alphabet soup of words onto the page. 

Not being able to write terrified me.  I had been writing for a few years before the accident and knew that it had really helped me to write my thoughts and feelings out on paper, get them out of my head. I was told I wrote poetically, though I didn't have a clue what that meant.  It sounded nice though.  Not too long after discovering that I couldn’t make myself sit down and write, I found a writing mentor who was eager to work with a TBI survivor who used to write, but suddenly couldn’t get herself to pick up a pen.  (If you want a writing mentor, just email me and I will be happy to share her contact info with you.)  

I think I was afraid if I started writing I’d be washed over by waves of sadness and swallowed in the mouth of grief.  I’d be swept out to the ocean and lost at sea. She gave me an assignment to write from stems starting with “I reclaim.”  I was to use images, describe sensory details as best I could, use childhood memories, (dolls were big for me as a kid, remember Tiny Tears?) and by all means use metaphors if they came to me.  I started writing “I reclaim....” I misunderstood her directions, one of those brain injury moments, and started writing poems. First, I wrote about things in my childhood, then the accident began to take over my writing self more and more. Writing poems became how I listened to myself and how I got what was in my heart out onto a page.  And in talking with my mentor, I found someone who heard my pain and was a witness to my feelings about losing a huge part of myself.   And so began my journey to this book, " A Life Interrupted: Living with Brain Injury."