Life with a Traumatic Brain Injury:
Every Little Breeze Whispers
|Posted on November 8, 2015 at 8:10 PM||comments (0)|
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 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.
|Posted on October 26, 2015 at 3:20 PM||comments (0)|
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?
|Posted on October 20, 2015 at 2:15 PM||comments (0)|
I woke up with one of those icky moods that perhaps only a person with a brain injury and PTSD knows - dark, meaningless, I didn’t want to talk to anyone, didn't want to hear a male voice, (I live with my husband, so that’s a problem, right there), I just wanted to be alone. I thought about going to yoga, but the appliance repair man was on his way and my husband was in a meeting in his home office, so I was tied to the inside.
After the repairman left, I decided to take my phone (with piano music-my absolute favorite sound EVER!-on Pandora) and go for a walk by the ocean where the best kind of ions, (negative) float in the air. I hoped those negative ions would help my brain.
I wasn’t sure if it was my injured brain causing trouble, or my adrenals, (somewhat fatigued by too much stress), or my auto-immune thyroiditis, otherwise known as Hashimoto’s, the fall season with less light, our condo being in a state of dis-ease from renovation work, the Cubs losing twice to the Mets, or that I am still grieving over leaving the Midwest, the Heartland, where I’ve lived most of my 68 years. Or it could be all of those ganging up on my brain creating havoc. I just knew I needed to get out, away from this space.
On my walk, I thought about a book, This I Know: Notes on Unraveling the Heart by Susannah Conway, I read a few years ago, when moods were at their worst. Back then I couldn’t get myself to go outside and take a walk, which I knew was a healthy thing to do. Susannah wrote about taking photographs outside during her journey with grief. Back then I was game for anything that might help a mood take the high-speed train to Mexico! And I knew I liked to take pictures. So out I went, and I have to say, it was magic, pure magic!!!
I now had a new way to deal with moods that actually worked! Supplements, writing, meditation, changing my thoughts or neuroplasticity, (screw it!) do not yet work for MY limbic system with low blood flow. That means too little oxygen and nutrition get to my limbic system (basal ganglia, thalamus, cingulate, insula.) (I didn’t make this up, it’s from a neuropsychiatrist’s report of spect-imaging of my injured brain.) Believe me, I’ve done enough research I could write a book, but my memory and cognition, (damaged areas of my brain) aren’t in good working shape for composing all this abstract stuff into a coherent - aww, just too much work and stress!
On my mission, a walk to the beach, I saw 3 ibis’ on a fence by the inlet, and took my first “snap” of the day!
With my new-found eye I kept my eye out for more to shoot. I got to the beach and the water was beautiful on a windy day (an easterly wind makes the ocean calm - I note the diametrical opposition in nature.) I had to take a video '20 seconds of gulf peace’, followed by shots of the beautiful blue, then a shot of yellow daisies at the edge of where the ocean ‘took a bite out of the shore’ and where an egret stood on the water’s edge.
Next, two deserted beach chairs, blue and green, grabbed my attention, followed by yellow daises with a water background. A little farther on more yellow daisies, rosy-mauve flowers and tall grasses with the ocean blue in the background, and I’m in heaven, totally distracted away from my dark mood! Being out in nature taking pictures, being able to focus on something besides my uncomfortable ‘safe place’ (aka home) helped my mood lessen. What a gift from Susannah’s book!
On my way back, I saw an artist painting hummingbirds, and her version of magical fish. They look a little like lion-fish, mostly blues, with some orange, yellow, and red on the hummer’s chest, just gorgeous! We talked enough for me to learn she is an environmental activist, who is down taking care of her elderly parents. She comes to the beach every day to walk or do her art. She wants to write something poetic about how we are harming the ocean, to go along with the creations that she sells.
I made a connection with an artist on the beach. Connecting with someone with similar interests also brought me joy!
This morning FB friends and a left-brained actuary just weren't helping my mood - I needed the real thing, nature and connection. Through taking pictures as I walked the beach, I improved my dark, unfriendly mood. It didn’t heal the adrenal issues I have, my auto-immune Hashimoto’s or the brain injury, but I felt better and I could write this!
|Posted on October 13, 2015 at 4:50 PM||comments (0)|
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.
|Posted on September 3, 2015 at 3:20 PM||comments (0)|
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?
Photo credit: Louise Mathewson
|Posted on June 6, 2015 at 10:20 AM||comments (0)|
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.
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.
|Posted on March 17, 2015 at 9:25 PM||comments (2)|
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.
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.
|Posted on December 18, 2014 at 8:25 AM||comments (0)|
In mid-September as I prepared for a 7 week trip to Australia and New Zealand, I realized my husband and I were going to be out of the country during the usual planning time for our family Christmas. Typically, we exchange names among the six of us - our two adult children and their spouses and my husband and me. Our two wonderful grandsons are not included in the exchange, so they make out well! My daughter-in-law usually does the draw, and mails us each a name in October. She has a friend check the name drawing to make sure none of us get our partner’s name. That way she doesn’t peek! I tell you, she’s so honest! This year, since we were going to be across the world in October and November, I decided to draw the names myself and mail them out in September.
I promptly wrote the six names on small slips of paper, shuffled and then matched them without looking. Too much bother for me to find someone to check the names, so I checked myself and decided to just not tell my family that I peeked. (I hadn’t figured out what I would tell them, if they asked.) The first draw had to be redone, and the second one too. I had to do a little shuffle with the names open to make it work. I wrote down a list of the matched names on a separate piece of paper, in case one got lost in the mail or someone forgot who they had. In the end, I actually had to look again at who I got, because I had forgotten whose name I actually ended up with.
As I finished up, addressed the envelopes and put each name inside its respective envelope, I realized I was the perfect person to do the Christmas draw! My impaired short-term memory would not allow me to remember so much detail - the matching of six family members’ names!
Who knew short-term memory issues could EVER be an asset?!!!
Wishing you and yours the happiest of holidays! ~Louise
|Posted on August 11, 2014 at 1:30 PM||comments (2)|
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.
|Posted on March 21, 2014 at 9:15 AM||comments (1)|
In honor of Brain Injury Awareness month, I offer this poem to care-givers, professionals, and those with Brain Injuries for what those with Brain Injuries have added to life to make our world a better place. (Go to my website's Home page to hear me read the poem aloud.)
Blessings For Survivors of Brain Injuries
Blessings for offering another version of life,
Blessings for undertaking rough terrain
with few signposts warning of danger.
Blessings as you travel a jungle of primal emotions
and remain in love with life.
Blessings for teaching others how to accept help for even the most basic things,
like walking, finding a word or planning a day.
Blessings for looking people in the eye and holding your head high,
in spite of your shattered confidence.
Blessings for picking up the pieces of your old self
and showing how to create a new life.
Blessings for offering a map
for others to use to explore their own inner landscape.
Blessings for receiving help from family and friends
so they can experience the gift of giving.
Blessings on you for learning a new dance
and singing a new song.
Now, write your own blessing for care-givers, professionals who have helped, and/or for yourself.