The 13th century poet, Rumi, acknowledged in a poem about love “though the pen wanted badly to write when it came to Love, its nib split apart…In the end only Love could explain itself and what it is to be a lover.” As I attempt to explain my love for Bob by tapping patterns of consonants and vowels on a keyboard, Rumi’s words resonate with my feelings of inadequacy. I simply adored the man.
Little to no thought was given to our 20 year age difference. In large part, this was because my maternal grandparents were my example of a grand marriage and their age difference was 17 years. Many times during our 23 years of marriage, I noted that I had to keep my energy in overdrive to keep up with him.
The passion we shared was palpable. A mutual friend of ours said that before we were dating she knew I was crazy in love with him “by the way you made his turkey sandwich.” A long-standing friend of Bob’s said, “Something or someone has changed this disheveled professor into a GQ dresser.” Any time our blue eyes met across a crowded room, a visceral feeling washed through our bodies. This passion heightened when the two of us were alone. Much to my chagrin, when we were in social settings, Bob would often mutate into an anti-social introvert. It took some years for me to quit being angered by his change and at last accept this behavior. In between times, I would attempt to explain my feelings to him by saying, “I just want people to see the man who has put my head and heart in the stars.”
Warnings of early stages of dementia were overlooked. When he left his luggage at Enterprise Rent-A-Car near the St. Louis, MO airport, I chalked it up to the fact that he was stressed out about traveling to officiate at his brother’s memorial service. When he got lost for two hours after we saw The Color Purple, I blamed myself because I had had to meet him there so that I could preside over a meeting. When he became belligerent driving us across Arkansas highways in the torrential rains of Hurricane Ike, I was grateful that hurricanes were not an everyday occurrence. Hmm, interesting how these examples all have to do with driving.
The sign I could not ignore and the sign that frightened Bob was his inability to move thoughts in his mind to sentences on paper. This was a man who regularly wrote academic papers, sermons, prayers, and a love letter or two with ease. When he asked me to help him with a paper he had been commissioned to write and publish, I thought he meant he needed me to type it for him. Instead, when I looked at the yellow legal pad he handed me, I saw a mixture of beautifully cohesive sentences and fragments of sentences written, crossed out, re-written, crossed out, and re-re-written. It reminded me of the movie, “A Beautiful Mind,” particularly the chalkboard scene where Russell Crowe, playing the mathematical genius, John Forbes Nash, Jr., had scribbled equation after equation that made little to no sense. I knew we were facing an uncharted journey. Months later, neurological tests confirmed that Bob had Alzheimer’s and vascular dementia.
The passion that I had for Bob, and for which I still yearn, turned to steadfast compassion. Through my call as pastor for congregational care, I had learned that we grow from sympathy (where we see and feel sorry for the plight of others) and stretch to empathy (where we actually FEEL another’s pain and our understandings, prejudices, and sense of justice stretch to be more Christ-like) and then we blossom with compassion (when we are moved to acts of kindness and mercy toward those who suffer or are vulnerable). With Bob’s diagnosis, I discerned a new calling—to blossom with compassion.
The journey with loved ones who have Alzheimer’s is grueling and all consuming– physically, emotionally, socially, and spiritually. I quickly recognized that I wanted people to not only know about this unique journey and I also wanted people to know and remember aspects of Bob in his prime. With encouragement from friends, I wrote No Winter Lasts Forever A Memoir of Loving Bob and Loathing Alzheimer’s. My book is a quick read—worthy of more than one read in order to glean the nuggets of truth.
This blog originally published on Alzauthors.com