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

An Avalanche of Kindness

I’m asked all the time why I would publish, in such great detail, the emotional story of Learning by Accident, and I always go back to my original motivation—to thank the huge community of caregivers that kept my family going. These were caregivers in the form of doctors, and therapists, surely, but they were also neighbors who stopped by with a pan of baked ziti, or an eighth grade boy with chocolate chip cookies for the girls. They were sisters and brothers calling me to listen, friends offering rides, a dentist who mowed our lawn, and a minister who remarried us in our living room. They were our ever-present parents giving all they could to keep us afloat—everyday people doing extraordinary things to help each other.

On January 1, 2012, I’ll give thanks for the health of my family with a newfound fervor. I’ll also whisper thank-you to the good people in the world, who with small acts of kindness, help others, sometimes without ever knowing it, and without expecting anything in return. Albert Einstein asked: is the universe friendly or hostile? And he said the answer to that question would determine our destiny. I believe the universe is friendly.  Here’s to 2012, and making kindness our measure of success for the coming year.

Caregiving around the Holidays

Here are a few tips for making the season bright even when you are more than overwhelmed with life minus the bustle of the holidays season.

First, breathe, and remember the spiritual event that sparked the holiday you celebrate. This will ground you as you create a plan that works for everyone, including yourself!

Keep meals and gifts simple but festive. Focus on crafts, activities, holiday music, movies, and spending time together. You might try reading short holiday stories aloud to your loved one, or listening to a book on tape together for an hour a day.

Involve your loved one in decorating and remember past holidays together.

Carry on an old tradition or start a new one. Set a small formal table in the bedroom with an electric candle. Who says dinner has to be in a dining room.

Be flexible. The less you worry about superficial things like gifts, perfect dinners, or a spotless house, the more fun you will experience.

Focus on loving the person in your care. This is a special time of year, one of reflection, and sometimes of great pain or personal loss. But remember, it's true, that in giving, you receive. And we all have the capability of giving a kind word, a soft touch, and a heartfelt smile. So open your arms and let it all in--the great meaning of the season, and feel blessed, no matter what your circumstances.

Thanksgiving

Thanksgiving can be a challenging time for caregivers and families going through transitions.
When families are scattered and some members have special needs that limit travel, many families decide to spend the holiday apart. This Thanksgiving will be an especially quiet one at our house. Both Anna and Mary are far enough away and have work demands that make it difficult to come home, so we will have four adults around our table for the first time in 23 years. I'm brainstorming on how to make this day more festive. Maybe we'll set up the Christmas tree and trim it after our turkey dinner. That way we'll get our holiday decorating off to a good start and Grandma and Grandpa can help hang ornaments. I'm sure we'll hear a few stories about some of our passed down heirlooms. I'm thinking a mini tree-lighting ceremony may be just the thing to keep our spirits up; it will keep us looking ahead to the holiday when we'll have more of a full house.  In any event, we'll all give thanks for each other, for the love we share, for our good health, and for the family members who once shared our table, but are no longer with us. On this holiday of reflection and introspection, we wish all of our family and friends a fullness of heart equal to that of their bellies.

Living to the End

In Learning by Accident, I cover the period in my life from April 2002 – 2004 in great detail. What follows afterward in the book is the epilogue, where I simply show a day in the life as I experience it now, only the ordinary has become extraordinary, and any crisis-free day is a glorious gift to savor.

I’ve learned so much through caregiving. Before Hugh’s accident, I was  stuck in the doldrums. I held myself back for a variety of reasons, making excuses for why I couldn’t go back to school, grow my business, or take a new exciting job. After Hugh’s recovery, I felt energized to use my time wisely. And after the passing of both my mother and father, I learned even more about my own behavior, and why I sometimes didn’t make the most of each day.

 

Erich Lindemann writes:

“If you can begin to see death as an invisible, but friendly, companion on your life’s journey, gently reminding you not to wait till tomorrow to do what you mean to do—then you can learn to live your life rather than simply pass through it.”

My mother remained patient and engaged with people through every hour she spent in hospice until she died. She didn’t fear death; she used her acceptance of it to make sure her life was lived fully in the moment. And even though she could no longer do many things, she could still be a person that others wanted to be around, and she was. People flocked to her for the peace and great love she radiated. Live the life you are meant to live. Don’t wait till tomorrow to begin.

Slowing Down

How do you deal with life when you feel like the disconnected period below a huge question mark? You're apart, hovering in the unknown, about to fall but you don’t; you stay put—floating in the middle of nowhere, frantic, yet unable to get anything done.

An inevitable part of caregiving is feeling yourself tugged by an emotional rope all the time. “I should be doing this, but I’m here doing my job—I should spend time with her, but I feel so depleted right now.” First of all, it’s normal to feel this way. Second, you can’t be in two places at once. Third, make a promise to yourself: when you are with your loved one in your caregiving role, you will be there joyfully, and your loved one will feel it. Number 3 is the most important, and you cannot achieve that level of caregiving unless you are healthy and recharged yourself.

Through my heavy caregiving years, I kept a stack of books on a table with a candle. When I felt really stressed, I reached for one of those books. They included: The Power of Now, The Joy of Laziness, and several other books with soothing, yet powerful messages that kept me grounded and calm. The Joy of Laziness, by Peter Axt, and Michaela Axt-Gadermann, proclaims, “Life is better slower.” I found this to be so true when caregiving. On the days I rushed around frantically, everyone around me sensed my nervousness and anxiety. But when I calmed myself down, the whole tempo of the house slowed down as well. Everyone could breathe easier, and we all had a better day.

When I was simply too tired or nerve-jangled to read, I lit the candle and stared at the flame. Somehow, it hypnotized me. I didn’t have to meditate or chant, or think, just watch the flame. A few minutes of zoning out straightened me out. (Just remember to blow out the candle before you run back upstairs to help someone!) And keep the peace, baby!