Behavior and Brain Injury, (it's not always about the brain injury)

As a kid, we often don't want to go to school, but we have to. As an adult, we often want to attend classes and seminars, but we don't have the funds or the time.

As a participant on a panel at the Virginia Department of Rehabilitative Services, where we discussed "How we Coped" with other caregivers, I was invited to stay at this full day conference bursting with information and speaking talent.

I was lucky enough to hear a talk by the inspiring Dr. Harvey E. Jacobs. The title of his talk was: "Brain Injury and Challenging Behaviors," but the content extended out to the family, community, world, ecosystem, and galaxy! His use of an animal slideshow at the end with a series of poignant questions places every human on earth flatly on a level playing field as he peels away the layers of what makes us all essentially human.
"Where do you live?" he asks. "Who are your people?"
"Do you live alone?"
"What do you eat?"

By the end of this slideshow, everyone in the room is moved to tears because he's demonstrated, through a simple series of questions and pictures, that no matter what behaviors anyone exhibits, no matter how different or dysfunctional someone may seem, we are all far more alike than different. We all require the same needs: a home, someone to love and love in return, and something to do. And when we act out, we are often reacting to our environment, our insecurity, or the fact that others have decided to take control of us "for our own good."

Thank you Dr. Jacobs for a lesson I hope to remember always.

April

April is an ambiguous month for me, filled with many emotional highs and lows. April 10^th is Anna and Mary’s birthday—one of the best days of my life, the day my two beautiful daughters were born! But on April, 11, 2007, my father passed away, and I miss him every day. A few days later, it all culminates with the anniversary of April 13^th 2002, the day that changed my life forever, the day I answered the phone in my kitchen and heard that Hugh was rushed to the hospital.

At the time, I had no idea our lives would be so incredibly altered, but looking back, 3:00 p.m. on April 13, 2002 began a whole new trajectory for me and my family. What seemed to be a regular day suddenly became a turning point.

The older I grow, the more events will be tucked into April’s calendar—new babies will be born, (Betty’s daughter, Katie, just had a baby boy named Jack yesterday!) and there will be weddings, funerals, engagements, and events we can’t begin to imagine. Both of my girls will be home tomorrow, and they will plant me a vegetable garden for my birthday (It was in March, but we waited to be together to celebrate) I can't think of a better gift than a spring garden full of promise. What do I wish for? Just this: the family in the yard, the sun shining, simple food, the sound of the voices I love to hear and their laughter--just an ordinary day.

Life is unpredictable, and full of wonder.  If I’ve learned one thing, it is to try to simply bend with the twists and turns life takes me on, to lean into the wind, and let it carry me along, because I know that even though there will be dark days, there will be an equal measure of light, if I only keep my eyes open.

Balance and Brain Function

I'm recommending a link as backup evidence of what I saw with my own husband's recovery after his TBI. As Hugh worked on his balance and strength training, his cognitive abilities soared. In my opinion, and apart from any science, I saw the greatest improvements in him when he began cycling and surfing again, two sports that require high levels of balance. The particular study I am posting was performed on elderly people in their upper 80's, which gives me great hope that ALL of us can improve our physical and cognitive abilities throughout our lives by improving our strength and balance. And, so what if it doesn't work...we will become stronger anyway, and it can't hurt to try this!

Deciding what particular routine should be done to achieve these results should be determined by each individual with their doctor. Best of luck. Keep striving! Here's the link:
http://www.ncbi.nlm.nih.gov/pubmed/18007119

Spring

Spring reminds us that no matter how long and hard the winter, new growth emerges.

In Virginia, our winter has been unseasonably mild and sunny, but it's still a thrill to see the Bradford Pears and Crabapple trees budding, and to be surprised by bright yellow patches of daffodils. Our attraction to and appreciation of flowers is a universal gift. Flowers make us breathe deep, they make us smile.

March is Brain Injury Awareness Month. The new campaign, "Anytime, Anywhere, Anyone" is in full swing.

Caregivers of loved ones with newly acquired brain injuries will be far too busy and preoccupied to stop and smell the flowers. Life stops for them for a long period of time, as they adjust to a new rhythm and reality.

Let's be caregivers of caregivers! Give a flower to a caregiver you love this month, and watch the smiles bloom.

Look to Those Who Inspire

We live in a time that offers easily accessible information of all kinds regarding illnesses and disabilities. We can connect with people all over the world on the Internet, even people who have walked in our shoes who might offer a different perspective. That's why it's important to know who we can connect with that will boost our own wellbeing.

Through the Internet, I just met Janet Cromer, author of Professor Cromer Learns to Read, a story of love and commitment in the most difficult of times. I came away amazed at the intelligent strategies she used to deal with her husband's brain injury, dementia, and parkinson's disease as she cared for him at home. Her story is complex, as many of our stories are; it's deeply tragic, yet shining with moments of pure joy and revelation.

And through a small blurb in Time Magazine (Feb. 12, 2012 issue), I learned that professional skier, Jill Kinmont Booth, a U.S. champion skier in 1955, has recently passed away at age 75. Jill broke her neck during a race, and was paralyzed, yet she learned to use her neck and shoulder muscles to write, paint and study. She was a teacher for thirty years. Her quote says it all, "To get mad...doesn't get you anywhere. You sort of look for what's good that's left." These are wise
words we can soak up and use to push forward.
Happy hunting in your search for inspiration, it flows all around us, waiting for us to take notice.

Marriage after TBI

Several people have asked me how Hugh and I stayed together in a loving relationship after TBI, so I’ve been giving it a lot of thought. First, I think it’s our history. We had been married 24 years at the time of Hugh’s accident, and his accident only deepened my commitment to him. I wanted him back, and I wanted him to recover to his full potential. That was my number one goal.

Second, although we experienced financial strain (Hugh lost his job), we continued to have a steady income after his accident, (social security and disability income). Many fights in marriages are caused by money problems, but Hugh and I had always lived within our means, and we continued to live within our means during his rehabilitation, so we did not fight about money. I did, however, stress about our future, and how we would pay for it all down the road, and that was hard enough, so I can’t imagine being flat broke and in debt throughout this ordeal.

Third, we had great doctors and therapists. Dr. G. at HealthSouth gave us advice on Hugh’s first day in rehab: be kind to each other. This advice, while it sounds simple, is extremely important. Whenever one of us snapped at the other, we’d remind each other, “This is hard on me too, so please don’t be cruel.” Kindness leads to so many other good feelings: gratitude, endearment, and love. Making a commitment to be kind to each other, and actually living it, can make a big difference in a relationship.

Fourth, we had strong ties to family and friends. We had confidants. We could vent to others in a safe way and feel supported. We had people in our corner, and we will never forget those that stuck by us throughout.

Fifth, we had counseling. I talked to the LCSW at HealthSouth, another social worker outside of HealthSouth, and Dr. Kreutzer, neuropsychologist, along with some of his fellows. Hugh met with the LCSW at HealthSouth and a support group there, as well as Dr. Kreutzer. These sessions provided us with the information, tools, and coping mechanisms we needed to move forward.

Along the continuum, there were times when things felt hopeless, days when we'd rather not get along, and long, lonely hours spent wondering how we'd ever get through this, but Hugh and I knew one thing: we wanted to stay married, and if we were going to stay married, we wanted it to be as good as it was. As it turns out, it’s better. We are more tuned in to each other than ever before. I realize that we are particularly fortunate because Hugh made such a strong recovery, and he never had a negative, angry or abusive personality change. We both feel fortunate every single day for that, and we both want to make the most of these midlife years together, because every healthy day we live feels like a gift we’re unwrapping together.

A Loss of Words

I just learned that Jeffrey Zaslow died yesterday in a car accident. Zaslow is the author of two books that mean a lot to me: The Last Lecture, a book given to me by my daughter as a graduation gift, and Gabby, the story of Gabby Giffords and Mark Kelly, and her triumph over tragedy.

Zaslow worked at the Wall Street Journal, and is said to have been an inspirational man. I wish I had known him. In his own way--by writing for both Randy Pausch and Gabby Giffords--he was a caregiver. He shaped the words they needed to say, so millions of readers would understand, not only their illness and injury, but the spirit that carried them through it.

In the case of Randy Pausch, Zaslow wrote the story that made the book an overnight success, and it's easy to see that Randy and Jeffrey shared many of the virtues illustrated in the book: "Earnest is better than hip," and "Enable the dreams of others."

It's such a loss to society when someone like Zaslow dies suddenly and prematurely. What would have been the next great book he would write? How many more people might he have touched? All we can do is honor the lessons left behind, emulate his great work, and pay it forward in a way that is uniquely our own. Thank you for teaching us so much, Mr. Zaslow.