Tuesday, July 2, 2013

Why Did Grandma Put Her Underwear in the Refrigerator? -- An Explanation of Alzheimer's Disease for Children

   I just finished re-reading Come Back Early Today – A Memoir of Love, Alzheimer’s and Joy by Marie Marley, Phd. 
   Max Wallack had invited me some time ago to co-author his children’s book,  Why Did Grandma Put Her Underwear in the Refrigerator? An Explanation of Alzheimer's Disease for Children.  He sent me Dr. Marley’s memoir last winter, as one way I might prepare for our work together.   
   Last winter was a profoundly difficult time. Roughly four months after my husband Jonathan’s diagnosis with Multiple Myeloma, an incurable cancer of the bone marrow’s plasma cells, I found myself in the dead of a snowy January, housebound alone for a week. Our daughter Abby was away at college in Salem, Massachusetts, battling the snowy front closer to the ocean.  Her Dad was off at Dana Farber for daily out-patient collection of stem cells to store for a future stem-cell transplant.  This is typical front line treatment for his disease.  He was staying nightly at our son Zachary’s place in nearby Watertown. 
   The collection process occupied an entire week rather than the one or two days we’d planned on.  Some of his aggressive autumn therapies had suppressed his body’s ability to produce stem cells, so different techniques to stimulate stem production were employed.
   It was at this time that I began poring through Dr. Marley’s memoir and a strange thing happened.  Rather than enjoying this precious chronicle as one way to prepare to co-author a children’s book, I found myself relating to its author.
    Marley, too, struggled with the shock and awe of living with a profound and incurable illness, then processing the illness itself, and its various challenges. She even shared, in a very early part of her memoir, her struggles with employment, as was I!  More precisely, the two of us were getting acquainted with ‘unemployment.’  In her case, she was a new PhD struggling for a university position.  Mine was a bit more self-imposed as I embraced the role of caregiving and medical research.
    The pinnacle of our parallel was a stalwart love that kept everything forward-moving.  For Marie Marley, her love for Ed and his for her was the bedrock from which she moved out of her sadness, toward a healthful self-identity and an evolving, beautiful relationship with her life partner.  Marley writes in her third chapter:

“He could have ended our relationship, and no one would have blamed him, least of all me, considering how unpleasant and stressful those depressions must have been for him.  But as far as I know, he never considered that option.  He was there for me no matter how far away I was from him.  He wasn’t able to make the deep depressions go away, but his steadfast love, caring and support made them far easier to bear.  I have often shuddered to think how I would have managed those dark days without him.”

   The passage above was steeped in irony.  At the time, I was trying to emotionally navigate the unthinkable: the prospects of my husband’s battle with an incurable cancer.  That week, he was at a myeloma center at Dana Farber, receiving harrowing treatments while I was snowbound at our home, with endless chunks of solitary downtime.  Reading this poignant love story was meant to be an academic exercise for a writing project.  Instead, it drove home how lucky I was to have a similarly stalwart love in my life.  Ed was to Dr. Marley what Jonathan was to me.
   But the irony was troubling: the patient himself in both cases was responsible for bringing their women comfort. 

   Early in my husband’s diagnostic process, I was SO busy distracting us both with research, collecting a rainbow of bottled supplements, joining website support groups and sites for myeloma trials -- ultimately speaking and writing in medical jargon.   Or in alternative-medical jargon:  hatha, vinyasa, bikram yoga, acupuncture, curcumin and alpha-lipoic smoothies.
   None of that frenetic activity provided the strength I needed to move forward with confidence and faith.  That all came from my husband.
   I relate deeply to Dr. Marley’s words, “I have often shuddered to think how I would have managed those dark days without him.”     
   Fear of life without my spouse caused trepidation in the first place:  how ironic that he was the antidote for my fears.
   But it's also been through the writing process (email shares, journaling, my blog) -- but especially my work with Max Wallack in this beautiful educational children’s book -- that I continue to educate myself.  And any teacher will tell you, education is the real antidote for fear.
   A seven year-old protagonist named Julie spans three years of her own young life remaining stalwart, holding faith and constant love in her heart.  Part of this young character’s “hope” is her future, a word that, to many caregivers, is the enemy.
   But there young Julie hangs her hope: hope to grow up to engage in Alzheimer’s research; hope as she watches her grandmother participate in exciting new clinical trials; hope that one day there can be an end to the “incurable” side of Alzheimer’s.
    I was honored to help breathe life into Max's character.  It was through Julie that I was reminded of bravery, love and hope. 
   If a seven-year old protagonist holds courage to enhance her present by ‘living strong’ inside it and embracing her future, so can the rest of us.
   Seventeen year-old Max has actualized Julies’ dream in real life. He currently studies in his junior college year at Boston University and works in the Alzheimer’s research field.  This children’s book is autobiographical for Max.  At a tender age he became a companion and caregiver to his own great grandmother following her diagnosis with Alzheimer’s.  And ever since he’s devoted each day to easing patients’ suffering by inventing adaptive equipment, recreational supports, and ultimately searching for a cure.
   We all do battle in one way or another with fear and foible:  overall I feel lucky to have in my arsenal my husband, four kids, the writing process, and friends such as Max who give me as much time as I need to “learn.”
   Today marks a special day:  I must say farewell to a fellow traveler I only knew through support groups, firefighter John Knighten, whose battle with an aggressive sub-type of myeloma finally ended peacefully last evening.  The end of his journey was apparent to all of us about eight days ago, but now that it is here, I feel no fear.  Just gratitude to have known of his strength and stalwart love of his own family.  
   In the end, the strength of love is all that matters.  Even fictional seven year-old Julie knows this.