by Sandra Matteucci
Friends in our front yard and neighbors beneath their carports waved goodbye as my parents loaded the final bags into our cars, packed to the brim. In response to an abrupt, out-of-state job transfer, my parents had jolted into action, uprooting four young daughters and a slender Siamese cat. My sisters and I alternately sat or scampered over the seats of our 1970’s paneled station wagon, blissfully unaware of what awaited us at the end of the road trip. I vividly recall that momentous, exciting journey to a new house, though I was barely four years old at the time.
Struggling to absorb the impact of the sudden move, a single phone call sent an even bigger shock-wave through our new home. My grandmother was coming to live with us. While welcome news, the circumstances overshadowed any joy. Her diagnosis of ALS, commonly referred to as Lou Gehrig’s disease, meant that even our best attempts to uplift her spirits could not alter the fact that her body was failing. My mom reacted to the news with her Scandinavian-style work ethic, systematically repainting all of the rooms sporting “groovy” 1970s’ colors to her preferred whites or neutrals just before my grandmother arrived.
By the time everything was unpacked, the cruel illness had already begun stealing her abilities and trapping her wonderful person within. Naturally, my mother and grandmother could not contain their grief – while my innocent self struggled to internalize what was occurring around me. The distressing sound of my grandmother weeping became part of our daily lives, and if the illness stripped her abilities, it heightened her emotions. As the months passed and the disease galloped along, it seemed that I had been transported and trapped within a House of Sadness. As the third of four daughters and no longer a baby, I resisted my newly required independence and began lashing out angrily – for attention, for love, for life to go back to normal.
The Poncho, A Treasured Gift
My grandmother labored to complete a “poncho” for me – with hands that could no longer reliably crochet or knit on command. She battled her illness in defiance simply to finish it. My younger sister’s poncho in pink was complete, and I stared in disappointment at the light blue one intended for me. My frustration came to a head, and I erupted. I loudly protested, stomped my feet, complained about the “ugly” color, and insisted I would never wear it. Though I did not understand her illness, I knew how badly I was behaving; I expected to be lectured and I awaited the sharp criticism that did not follow. Instead, my grandmother smiled in a knowing way and did not correct me. I remember carrying on, puzzled by the peaceful expression, one which certainly did not belie someone coming to terms with her fate, loving a granddaughter she would never see grow up. I remember where she was sitting, the light from the window on her serene face, the way her hands held onto the poncho. If only her contented expression could have contained the wisdom to know I would one day treasure the gift I rejected.
Each stage of the illness required new accommodations – and much physical effort – of my fairly petite mother. My sisters, by then ages 10 and 12, took over my routines for a while. They dressed me, brushed my waist-length hair, and assembled me, along with my younger sister. Whereas I used to call “mom”, I began calling my sisters’ names instead. Rather than playing with each other, my sisters began obediently watching us, their younger siblings…all of us captive to the sad events unfolding. When my grandmother became unable to call out to anyone, my parents placed a large bell by her bed. When I heard the bell ringing, I knew grandma needed to be rolled to the other side, adjusted, or moved during the night. By day, my mother rarely took her out of the house, instead hiring an older babysitter, one who could handle all of us. My grandmother’s growing paralysis became an unavoidable truth, with the evidence all around us. I knew, even at such a young age, that she would never get better.
My reserved father returned home each workday to six needy females – baby to aged. Though unprepared for this role, he claimed it. From holding me on his lap while he watched the evening news, to assisting my grandmother when she needed him, he provided an example of quiet strength and duty, no matter what the hour, or what the obligation, as did my mother. My baby sister and I began mimicking their behavior, running to bring my grandmother whatever she needed, taking on some responsibilities ourselves.
On a particularly difficult day, I fought with everyone and felt completely abandoned. When my father walked in the door, I overheard my mother telling him about my misconduct. The day had been filled with back-to-back scolding, so I braced myself for his much deserved disappointment. In this instance, though, he did not say a single word. He took me securely in his arms, hugged me and quietly stroked my hair. It seemed like forever passed, and still, he said nothing, occasionally patting my back ever so softly. I remember crying out of shame, shame at how I had been acting. I promised myself I would be better, I wanted to “deserve” the love he was showing me, seemingly uncommonly kind given the circumstances.
Though everything my grandmother did required unusual effort, in her quiet, faltering voice and from her wheelchair, she managed to give me one last and precious gift. S
he taught me how to read. The original books about Donald Duck and Pluto, Mickey and Minnie Mouse, split at the seams, were the same books she had used to teach my uncle how to read. In those quiet times together, I gained not only the skills to initiate my lifelong love of reading, but the essence of my grandmother, someone who slipped into my life even as she clung desperately to what was left of her own. The tint of her deep gray-blue eyes made such a permanent impression on me that I recognized it nearly 30 years later when looking into the eyes of my own daughter. My grandmother, herself, was unforgettable, not just my experience of her illness.
During this challenging time, I learned the meaning of love. At my very worst moments, I remember the patience and generosity of my family – providing me love when I felt I deserved it the least. That my dying grandmother’s final physical feats involved reaching out to her granddaughters, trying to provide for us and trying to teach us, embodied love, too. I would one day experience other kinds of love – the joyful sharing ice cream love, the best friend forever love, the special heartfelt gifts, dreamy infatuation and the exciting “swept off your feet” type of love. But I am glad I experienced this sort of love first – the unwavering commitment, acceptance, and, yes, difficult sacrifice to meet loved ones’ needs, regardless of the demands or the fatigue.
When my grandmother died, my younger sister and I did not attend the funeral; it was thousands of miles away, and my parents brought only my older sisters. I did not know then that a final expression of love would etch itself in my memory at the close of this trial. Having the family away and a sitter in their place seemed strange.Suddenly, with so few people around, I reacted to my boredom by investigating our home as never before. After several days of exploring, I locked myself in a bathroom and sorted through my mother’s belongings – something I would never do had she been home. I began toying with a shiny red bottle, and I watched helplessly as it plunged from the countertop, shattering, spilling its contents all over the pale blue tile floor: red nail polish – everywhere.
Love and Forgiveness
I heard some commotion and was startled to realize the rest of the family had arrived back home. My mother wandered upstairs, searching to find me, and there I was, guilty, with glaring nail polish and glass splattered all over her bathroom. She glanced at it and then wrapped her arms around me and hugged me in a startlingly rare, unhurried way. I watched in wonder as she proceeded, without as much as a sigh or a reprimand, dutifully removing every trace of the mess. She seemed almost relieved to have this chore to complete, as if she were wiping away all the sadness that had spilled everywhere for so long. In that now very familiar way, I knew I was loved.