Many of you know that my mother lived and died with dementia. I learned a lot from being her daughter. She was a tough, determined, brilliant, beautiful, self-made woman who lived and died with grace and grit. In April 2017, nearly two and one-half years after her death, Mom wrote me a letter that I want to share with you today.
But first, let me explain.
Shortly after I was diagnosed with FTD, I attended my beloved colleague group for the last time. At our annual gathering, we always studied with a scholar. That year, gathering in Santa Fe, the scholar was Kayleen Asbo, a renowned storyteller, mythologist and depth psychologist. The topic was Dante’s Divine Comedy. In an interactive presentation that included art, music, psychology, mythology, religion, literature and history, we walked (actually galloped) through this epic poem. It was amazing and exhausting.
According to Dr. Asbo, Dante’s masterpiece is a story of revelation, remembrance, and reconciliation and exploration of love, loss and longing. This 14th-century poet provides us with a model of what to do with personal and collective grief.
During the first session, we were introduced to Dante’s spirit guides to help navigate and interpret his journey through the inferno, purgatory and paradise: Virgil, Beatrice and Bernard of Clarivaux. Dr. Asbo asked us to identify our guides. My list included a couple of mentors, a few friends, a therapist, a spiritual director, and my mother.
At the end of our time together, we were invited to take some quiet, reflective time and write a letter to ourselves from one of our guides, an ancestor, a person of wisdom. We were to begin with the phrase, “What I want you to know is….”
By this point in the conference, I was a mess. Exploring Dante’s story surfaced a lot of the love, loss and longing I was feeling as I began my journey with dementia. I didn’t really want to write a letter to myself. I just wanted to feel sorry for myself. But I sat down with my computer and began to write. Blinded by tears, I wrote a letter from my mother, which was odd, because my mother rarely wrote letters, at least not to me. At the end of our assigned time, I closed the document.
Later that afternoon, on the high road to Taos, one of my dearest friends suggested that we share our letters. I agreed. He had written a letter from his father. After reading it, I asked: “Is this what your father would really say to you?” He replied: “It’s what I wish he would say to me.” Aspiration and realty - two sides of the same coin.
He then read my letter, and with tears in his eyes, he said, “Wow. This is amazing. She really spoke to you. Aren’t you lucky.”
I decided I should read the letter since I couldn’t recall what it said. It was amazing. She really did speak to me. I am lucky. In fact, I am blessed by such a good guide.
So, while it is a very intimate letter, in honor of Mother’s Day, I have decided to share it with you.
I haven't written you many letters over the years, but I'm writing to you now. I've heard the news of your diagnosis. I'm so very sorry that you've inherited the family illness. It's not much of a legacy to leave with you. I wish we had talked about it some before I died. I wish that I had gotten all the testing that you've had so that we both might have gotten a better understanding of this disease. Isn't it coincidental; I always wanted to be a brain surgeon, and we both ended up with brain disease.
It's a sad thing to lose your ability to think and speak. I know how frustrated I got at the beginning, but it does get easier as time passes and the disease progresses. And then there comes the time when you know it's over and you want to go home. I'm glad you were there for me then. I'm grateful that you honored my wishes as you did. I do wish that there was an easier way to die with dignity. May it be so for you.
I miss you. I miss not having spent enough time with you as an adult. I enjoyed your companionship, and I loved getting to know Emily. Please give her my affection. As you walk through this time, don't be afraid - no harm will come to you.
There will be good that comes out of it. May it be so. Know that I'll be watching over you, and when the time comes, I'll welcome you home with a big hug.
Those of you who are fortunate to have living mothers, make sure you ask them to share their wisdom with you. And those of you whose mothers have died — what messages would they have for you from the realms of eternity? Maybe you should invite them to write you a letter and find out.
And to all the mothers reading this blog, Happy Mother’s Day! What story or message can you share that your loved ones might really need to hear someday?