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!

Working Together

Who would have thought, nearly ten years ago, as Hugh slept comatose in the ICU, that  one day we would stand in front of a graduate class of 44 occupational therapy students talking about our experience with traumatic brain injury. This morning, at the request of an OT Professor at Virginia Commonwealth University, we found ourselves at the podium remembering, sharing stories, and even joking with a group of medical students ready to launch a career helping survivors of open and closed head brain injuries.

When Hugh completed his talk by saying,"...and now we'll take your questions. And I want you to understand, we will answer ANY question...no matter how down and dirty." The group broke out in laughter.

Question: "Hugh, did you ever feel upset at your wife because she could do things and you couldn't?" Pointing to me, he said, "Oh, you mean that control freak? Yes, of course!" I had to nod in agreement, while trying not to turn red in the face. I always was a control freak, a trait that swelled by the day after Hugh's injury. "That's natural," he added. "But Rosemary was good natured. She essentially brought up three adolescents after my injury"(more laughter).

As much as the writing of Learning by Accident was my therapy, the publishing of this book has bonded me with Hugh in a way that might never have happened, and provided us with meaningful work we can perform together. It's a testament to opening yourself up to the world, and being who you are. Ask yourself the down and dirty questions you really want to know--stop hiding and find your answers. They are there if you look hard enough.

Encouragement

When someone showers me with meaningful words, it is a gift beyond the greatest material gift in the world, because I can tuck these words in a pocket in my mind and pull them out anytime I need direction, reinforcement or strength. Sometimes they come in the form of a song lyric or poem, and sometimes they arrive as a single dynamic sentiment that will live inside me, and fortify me forever. It’s amazing—the difference a few words can make.

I’ll be forever grateful to Sally Reed who reached out to me when Hugh was nearing the end of his rope after many months of rehabilitation. Here’s an excerpt from Learning by Accident:

When I email the Lance Armstrong Foundation, an organization devoted to cancer victims and their families, I reach a woman named Sally, a cancer survivor herself. We never meet, and yet we email back and forth and she reaches out to me in a profound way. I ask her in desperation, “How can I help my husband? I feel so useless. What can I do to make a difference?”

She writes back: “Remind him that you love him. Remind him of his past. Remind him that you love him. Remind him of your history with each other. Remind him of his daughters’ birthdays, your birthday, anniversary, and remind him that you love him. Talk to him, talk to him, talk to him, and remind him.”

This is some of the simplest but most useful advice I have ever received. Thank you, Sally.

True Friendship is Timeless

I traveled 21 years back in time this past weekend to a place I lived before I lived in Richmond, to the Green Mountains of Vermont, and they are now just as pristine and as unchanged as they have been for hundreds of years. Vermont is vastly unique in its timelessness. While there are pockets of “civilization” (neighborhoods, small cities, and busy streets), you can still look into the distance from many vantage points—as far as the eye can see—and spy only a dot or two of some old farmhouse peeking out between the overgrowth of foliage everywhere. I stayed with my friend, Terry, at her new home in Georgia, Vermont. Old friends and coworkers showed up for a fun book party at her house on Saturday night. Everyone was excited and friendly; none of the usual chiding about not staying in touch enough. While staring into familiar faces from over twenty years ago, it almost felt as if no time had passed. Sincere friendship is timeless, like the rolling landscape of the mountains. Once securely settled in the heart, it is always there to sustain us.

Unexpected Gifts Bearing Secrets

While Hugh and I sat reading in our small condo in the outer banks one afternoon, we heard a knock at the door. Outside, stood an acquaintance we had met only weeks before, bearing a lovely gift and card. She asked to speak to me.

She told me she had heard about my book when I handed a few bookmarks out after Hurricane Irene and she bought my book immediately. "I read the entire book very quickly, from his perspective," she said, pointing to Hugh. "Thank-you for writing this book so others understand that people with brain injury may look perfectly fine but still be struggling with many issues." Her eyes filled up.

Shifting nervously from leg to leg, she poured out her own story, saying that Learning by Accident filled in all the blanks of her life for her. "Here, sit down," I said. The three of us talked for nearly two hours. This woman's brain injury occurred forty years ago. Back then, there was little done except to watch a person in a coma and send her home when she woke up. No rehab. No therapy. No grieving. Get on with life. She did just that, and has lived a very happy and fulfilling life, but no one told her about the blank period she suffered in between crashing and remembering, and for her, it was a very long blank period. "No one talked about such things back then," she said. "I cried in my pillow, and I moved on. Your book means everything to me."

After she left, Hugh and I looked at the gift she gave us, a lovely wreath for our condo. But the real gift she gave us was her story. The book unwrapped it, she presented it, and we received it, allowing her to come full circle.

Slippery Memories

At age 55, I'm starting to worry when I forget my keys, or when I forget why I came upstairs. But since I've learned that worrying doesn't solve anything, I've been investigating ways to strengthen my own neural connections and make my brain sharper. What I've discovered is this: that doing more of the things I love won't really help (in my case, reading and researching) because those neural connections are already strongly embedded in the pavement of my memory highway. I need to learn new material and reinforce it. I need Math. I need to learn a new language, or play Sudoko. The trouble is, I don't enjoy these activities at all. This left me with a dilemma, until I stumbled on the website, Lumosity.com.

Lumosity is a brain training system that measures your brain power, brain processing speed, and reaction time all while you play games on the computer. The more you play, the stronger your neural connections become, and you can see your own progress. It hooked me right away. Of course, after my free trial, I had to pay for this, but I feel the price is reasonable, and the benefit it provides is apparent in my daily life. This is not a commercial or endorsement, but a suggestion to anyone who feels their mental stamina slipping as they age: take action. The earlier the better. Work your brain in a way you have not worked it before, and add more mentally sharp years to your life.