Onward!

This is my last post for Caring and Giving, and happily, it’s not good-bye! A wonderful opportunity has presented itself. I could not be more excited about sharing this with all of you, my very first blog followers! Today is the launch of my new weekly blog on BrainLine.org. BrainLine is an award-winning national multi-media site produced by WETA, the flagship public television and radio station in Washington, D.C. I’m extremely honored to play a small part in the incredible work they do. My new blog, called Learning by Accident, will explore all aspects of TBI caregiving: the challenges, joys, and the bonds that unite us through collective life experience.

I started my Caring and Giving blog in January 2009 while my mother lived with us in hospice care as she fully lived out the last few months of her life with chronic obstructive pulmonary disorder (COPD). As of that date, I had helped my husband rebound from a severe TBI and seen my father struggle through the last two years of his life in a thick fog of vascular dementia. I watched how it robbed his memory, but never his jovial laugh and love of music.  I wanted to capture in written words, the beauty, sadness, and serenity of my beautiful parents: the gradual unwinding of lives well lived; the slow deterioration of worn out bodies paired with soaring souls.

Today, I cannot stop thinking about them. They fortified me with their strength and encouragement. My father, a gifted musician, continually told me to push on with my writing, and my mother, who read the full manuscript of Learning by Accident while in hospice said, “You must publish this book!” The lessons they taught me live on—the most important one being, people come first—love deeply and without regret. I watched them live this every day.

I published Learning by Accident within a year of my mother’s death, continuing my Caring and Giving blog with a new focus on brain injury as I launched the book in 2011. Since then, many wonderful relationships have bloomed: at the Medical College of Virginia, VCU Health Systems, The Brain Injury Association of Virginia, HealthSouth Hospital of Virginia, the James River Writers, and BrainLine! I owe so much to more people than I can name, and look forward to continuing my work on behalf of caregivers, families, and the men and women who brave each day following a traumatic brain injury—like my husband—whose tenacity and lust for life continues to inspire me!

Thank you for sharing this journey with me. I hope you’ll visit me at BrainLine.org each week as I continue the conversation there!

Thanksgiving-Not for Sale

Thanksgiving is my favorite holiday because it’s centered on gratitude and the sharing of traditional family food. There are no presents required, just presence. Everything from the crackling fire, the swirling aroma of pumpkin, cinnamon, nutmeg and apples, to the rush of setting the table with autumn colors and candles feels more peaceful than other holidays, maybe because there is no pressure to buy a gift—the gift is the gathering.

I've seen on the news that several big box stores are opening on Thanksgiving with doorbuster sales ahead of Black Friday! I find it sad that people will be pulled away from their family tables to work a register or stock shelves for throngs of deal seekers. Somehow, this elevates consumerism to an absurd new high. With a world twisting in turmoil, wars going on, people out of work, and many people struggling with disability, is it really necessary to focus on the next best wireless device or designer outfit? Is there not one day we can reflect on what we already have and find it sufficient? I plan to do that, and I'm glad to learn that many of my friends and family feel the same way. 

I remember well how fortunate I felt the first Thanksgiving following Hugh's accident, and then how fortunate I felt to still have my parents with us, though gravely ill, for yet another year. As caregivers, Thanksgiving can truly be a day devoted to those family members who need us most, who rarely get out, and who often feel lonely. It is a sacred opportunity in this fast-paced world to enjoy a stretched out dinner and dessert with the people we love most. Some people may want to rush through their meal and stand in line for a big screen TV. I'll be relaxing at home. Pass the pumpkin pie!

IGS - Irritable Gratitude Syndrome

Do you suffer from IGS: Irritable Gratitude Syndrome? That’s when you find yourself saying, “Sure, I’m thankful that I have my health, but I wish I had this or that," or "I’d be really happy if I could only….”

I suffer this disorder from time to time. Hurricane Sandy smacked some sense into me this week. Not only do I have my health, but my family is healthy—at least at the moment. I  have a roof over my head, food in a fridge that has power, heat to warm me on a cold night, and steady income to pay the bills. I should be bouncing off the walls in jubilation. I am rich beyond measure. This is my thank-you note to the universe.

IGS is a common affliction. It’s natural to think the grass is greener on the other side. Lately, though, it’s clear that misery is also on the other side: unexpected, tragic misery that can strike any of us at any time.

Sandy has made boring, everyday life, exotic beyond measure. 

How Healthy are You?

Do you define yourself strongly by one thing or another? If you define yourself in terms of your health, do you focus too strongly on what’s not right with you and fail to see all the strong, healthy systems in your own body?

I’m talking about how we see ourselves: failing or thriving, fit or weak, capable or incapable; and what labels we use for ourselves: I’m a diabetic, a TBI survivor, an asthmatic. One of the qualities I have come to admire most about my husband is his refusal to be defined by his TBI.  He sees it as something that happened, he dealt with it, and it’s over. He doesn’t make it who he is. He doesn’t blame every problem he has on it, and he never really brings it up.

Instead he tackles whatever is before him, gets his work done as well and as quickly as possible, and then he works in as much fun as he can—such a great way to live life to one’s potential.

TBI Caregiving as an Olympic Sport

If TBI caregiving were considered an Olympic sport, what category might it fall under: a competition? A sprint? A marathon? A team effort?  What qualities would a caregiver need to successfully meet the challenge? Vision, persistence, focus, and endurance would be key, along with the ability to refine techniques, and try over and over and over again until you get the right results.

I’ve met many Olympian caregivers who never give up, who inspire us to try harder, and who encourage others through their own example. While there are no gold medals for these events in life, they make us stronger, more resilient, and able to face life challenges head on or support others meeting a new challenge. So as we caregivers witness athletes poised on podiums with tears of overwhelming gratitude for having attained a personal best, we can smile inwardly and know we have also given our all in a way that has made a difference.

Thirty Minute Challenge

What can you do in thirty minutes?

I’m always talking about how important and beneficial it is for people with TBI to exercise, but it's equally important for caregivers. I don’t listen to my own advice often enough. My daily exercise has degenerated into a leisurely walk once a day. Today, I tried something new: for thirty minutes (when I might have been fooling around on Facebook or reading the paper over coffee), I decided to move as though I had been given 30 minutes to fill up a shopping cart at my favorite store. I was amazed at what I could do in that small amount of time if I planned it out and just did it.

8:00 a.m. - 8:15: a vigorous walk outside while talking to a friend on the phone.

8:15: Turned on morning news and exercised while watching. During commercials, I blazed through housework, vacuumed three rooms and the staircase, and ran through the house collecting stray glasses and garbage bags. While the news was on, I watched while doing jumping jacks, lunges, push ups on the staircase, and yes, a few dance moves! I actually broke a heavy sweat.

In 30 minutes, I caught up with a friend and the news, exercised, and cleaned up the whole downstairs. The best part is, I feel like I accomplished something and did something good for myself.  My challenge is to do this every day, or let’s be real—most days!

What can you do in thirty minutes?

Feeling Connected

Over the weekend, in the scenic Green Mountains, I reconnected with family. There were brothers, sisters, cousins, second cousins, and some relatives I had never met before (over 100 in all).  We played, ate, sang, danced, and toasted our tight Irish clan for two days straight at the kind of family reunion that happens only once every twenty-five years, if that. By the time I left with my little family of four, I felt like a part of something so much bigger than myself—strengthened by those reaffirmed relationships, this bloodline that nothing can sever.

I began to wonder if these connections have any other effect on people besides making us feel warm inside, so I did a little research. It turns out that feeling connected not only makes us feel good, it makes us do good. Read the link below and maybe you’ll be inspired to plan a family reunion sooner rather than later! Go ahead, throw a party--everyone will benefit!

http://greatergood.berkeley.edu/article/item/feeling_connected_makes_us_kind/