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.

Sleep Soothes

I just read an article worth sharing in Science Daily:

Dreaming Takes the Sting out of Painful Memories

The article illustrates the benefits of dreaming in people with post-traumatic stress. It explains how dreaming allows a person to reexperience a stressful event without the interference of stress neurochemicals. This effect takes the edge off trauma, and we wake up better able to cope.

I love that there is now science to prove how very important sleep is to caregivers and others who experience PTSD.  Happy snoozing and sweet dreams!

The Psychological Crib

Yesterday, a side to our story was told in an article in the New York Times, that is expressed in my book, but in a different way. (http://www.nytimes.com/2012/01/10/health/when-injuries-to-the-brain-tear-at-hearts.html).

With a scientific slant, the article exposed the challenges psychologists face when counseling couples with marriage problems after one person has changed drastically following a devastating injury. 

After a brain injury, roles flip. The caregiver usually becomes a “guardian” rather than a partner, at least for some period of time after the injury. The injured person is suddenly thrust into a world where he (or she) is not only physically limited, but placed in a psychological crib, and constantly reminded that he can no longer do the things he once did with ease—eat, walk, drive a car or climb stairs alone. And then he's told he no longer makes sense, he doesn't remember, and he's confabulating (creating false memories). It’s easy for couples to become locked in disagreements or to feel resentful of each other. It’s suddenly hard work to get along—hard not to miss the easy relationship that once felt so comfortable. As the injured person heals, the caregiver must pull back, stop hovering, and allow the injured person to take chances in a world that suddenly feels like a dangerous place.

It’s not only the injured person that changes in an accident—quite often, the caregiver changes. Sleeplessness, anxiety, frustration, and fear can alter a personality and strain relationships in the process.

All of this was conveyed in the Times article. Counseling is helpful, but what tools can counselors use to help couples going though this? For us, communication was important. Constantly putting ourselves in each other’s shoes helped. We had to remind each other that we were in this together, we both wanted to stay married, we both wanted to reach a connecting point, a place of mutual respect, understanding, and love. I’m so glad we did.

Hugh and I are more tightly bound now than ever before, and even though letting down the guardrail of the psychological crib (or as my husband would call it: stopping the nagging) caused a good deal of anxiety as I watched him conquer feat after feat, anxiety can be overcome, but the loss of a soul mate, never.

Starting off with a Bang

It's January 9th already! I had a great time talking to the many people who showed up at the VCU Larrick Center to speak to our senators and delegates about preserving funds for brain injury services and many other much needed mental health services. I hope these funds stay in place.

I'm starting the new year off with a renewed mission: to sell my book and continue spreading the word about how important immediate and ongoing treatment is for brain injury patients and their families. Ongoing quality rehabilitation is the best way to optimize each person's healing potential. Some will return to work. Many will formulate a fulfilling life plan. Support and treatment is crucial in the early months of a brain injury, and the more the public is aware of the consequences of brain injury, the more people will understand how treatment can lead to productive lives and cohesive, stable families.

Remember, a brain injury can happen to anyone, at any time. We are all vulnerable. A slip on the sidewalk, a knock on the head in a football game, an injury from a fall or a car accident, or a sudden stroke can change the rest of your life. I was recently asked, "Aren't you tired of talking about this subject?"

The answer I gave was a resounding, "No." It's an important subject with an evolving science. Big strides have been made in saving people with brain injuries. Now it's time to make sure those people rehabilitate to a life worth living after being saved. 

You Can Make a Difference!

There are many ways one can acquire a brain injury.  In 2011 we heard about Gabby Gifford’s traumatic brain injury from a gunshot wound to the head, numerous TBI’s acquired in the wars in Iraq and Afghanistan, and brain injuries sustained as a result of domestic abuse, car accidents, bicycle accidents, falls, and in sports ranging from football to hockey--not to mention strokes.

A brain injury can happen to any one of us or those we love. We are all vulnerable.

The Virginia General Assembly is seeking a nearly $78,000 cut to brain injury services. These services are essential to families all over Virginia.

Here is a plea from the Brain Injury Association of Virginia. I hope you will be able to help in any way possible and pass this along.

“Regional budget hearings are scheduled for next week; please consider attending and providing a 3 minute plea for help. Speak about what services you are receiving and why they are important and why more are needed.   Speak about the services you are unable to receive because of wait lists or because there are no services where you live. Speak about how much this $600,000 is needed to fund supports and services for people with brain injury. If you plan to attend, you should arrive 1-2 hours early; you have to sign up to speak and there’s usually a line…and the earlier you get a chance to tell your story, the better.” The schedule for the meetings is: THURSDAY, JANUARY 5, 2012 (Hearing begins at 10:00 a.m.) - Big Stone Gap – Mountain Empire Community College, Philip Taylor Hall, Goodloe Center FRIDAY, JANUARY 6, 2012 (Hearing begins at 10:00 a.m.) - Fairfax County – George Mason University, Fairfax Campus, Johnson Center, Dewberry Hall FRIDAY, JANUARY 6, 2012 (Hearings begin at 12:00 noon) - Newport News – Christopher Newport University, Ferguson Center, Music and Theater Hall - Lexington – Virginia Military Institute, Marshall Center for Leadership and Ethics, Hall of Valor - Richmond – Virginia Commonwealth University, Medical College of Virginia, Larrick Student Center, 900 Turpin Street If you are unable to attend the budget hearings in person, write a letter and tell your Delegate and Senator how you feel.   You can find out who your legislators are by going to http://conview.state.va.us/whosmy.nsf/main?openform and entering your address. Send this email to your friends and family, and tell them to write to their Delegates and Senators and speak up too. Thank you, and Happy New Year! Visit the BIAV site to learn more