“She liked being reminded of butterflies. She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her not to be sad for the butterflies, that just because their lives were short didn’t mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, see, they have a beautiful life. Alice liked remembering that.”
― Lisa Genova, Still Alice
Last week I was at the library with my son when I saw a sign for the latest book club book, Still Alice by Lisa Genova. It is a fictional account of one woman’s journey with early onset Alzheimer’s. Genova’s Ph. D in neuroscience from Harvard, experience with a grandparent with Alzheimer’s, and her commitment to research for the story drew me to the circulation desk. I opened the book today and am already drawn in.
Earlier this year I stood in the lobby of the Happy Frog Copy Center, talking to Rose, one of the owners, about my need for a logo or a picture to make my business cards stand out from the rest. I was fidgeting with the gold necklace around my neck, a gift from Mike adorned with a butterfly charm that my mother wore when I was a little girl. “What about a butterfly that looks like your charm?” she asked. I smiled and told her that I loved butterflies, and they often reminded me of Mike, especially Monarchs because orange was his favorite color. And so, the logo was born.
The theme of butterflies, their life cycle and their beauty has been one that has reoccurred many times throughout my journey as a caregiver. A few years ago my therapist said to me “We are all traveling across the ocean to the same island. Some of us are tugboats with a heavy load to bear. Others are butterflies who make the trip more beautiful for others.” That Christmas I gave my best friend a butterfly necklace.
I hope that Still Alice gives me a window into another’s perspective on living with dementia. The more that we talk about it, the more that we share, the more that our communities will know. Caregiving is hard work. In the same way that I received my son without an instruction booklet, my husband and my father came to me with a diagnosis and no manual. I am sharing my story and hoping to inform and inspire others. I am still learning and on the lookout for more butterflies in my life.
I am a co-facilitor of the Boston area FTD Support Group. We meet monthly to share stories, learn new information and ask questions about caring for a loved one with a frontotemporal disorder (FTD). All of our meetings are powerful, but this last meeting made me pause for a moment after the ritual go-around where caregivers provided updates. Anxiety, sleeplessness, fear for the future and struggles to get through each day.
Caregivers talking about themselves, not their loved ones.
I paused because I was struck by the weight of the challenges laid before us. Our caregivers were like soldiers, stopping to reaffirm the war plan, committed to staying on track, even though they weren’t sure what path the road ahead would take. Our caregivers are courageous because they live vows, honor friendships and recognize when support is needed. Courage is needed daily, sometimes hourly, to make it to a place of peace.
My indoctrination into this community of courage and care was that I loved someone with FTD. Loving Mike revealed a tigress in me that I didn’t know existed. This powerful force allowed me to make decisions, provide care, and ultimately, let go.
Today’s tigress doesn’t have to be on the lookout every moment. But, I need her in a new way. To relive my moments of anxiety, stress, and loss. To listen to another caregiver’s story and hear my own. To talk to my son about why his Dad can’t live on earth.
Today was the first day of Love Is Out There, my 36 day campaign to raise awareness for FTD, caregiving and taking the power back from rare disease. The tigress is here. Looking for every connection with another caregiver. Nudging me to share my story and reveal something powerful. To keep going even though I don’t know my destination. To be a voice that makes a difference. #EllenandKatieRDD2015 #FTDAwareness #CaregiverCourage
There are a few things that I know for sure about my mother. She loved green tea in the mornings, listening to Celine Dion in the car and could always be counted on to give my sister and I a book every year for Christmas. In 1996 she gave me the first edition of Chicken Soup for the Soul: 101 Stories To Open The Heart And Rekindle The Spirit. I was 16 at the time and Mom had been trying to encourage my interest in writing. Her inscription on the inside cover read:
I thought you might appreciate the quotes + stories in this book. Some day you’ll have your own to collect that will give you inspiration. Write them down. We all need to be reminded that love is out there.
Mom never would have wanted me to have this story to tell. She couldn’t have imagined it. Yet, she had confidence in me. A feeling that someday I would want to share a part of my life with the rest of the world. Today I am 34 years old. I am a mother myself. Eighteen years after she gave me this gift, I am overwhelmed by the confidence she had in me. Reading her words inspires me to have the courage to share mine.