One day this summer, my mother followed me onto her front deck when I was leaving. She is an old hippie and it was a hot day, so she was only wearing a pair of oversized white underpants. Despite her fatal illness, my mother is still interested in advancing her unorthodox ideas about being alive, including stripping off her blouse in the living room whenever she feels overheated, or indulging in the use of mind-altering pot butter manufactured by her husband, Boyd, who is 24 years younger than she.
On this day, she is attached to the house by a long, clear plastic cord that runs all the way to her bedroom closet, where it connects to a tank that delivers oxygen to her through a hole in her neck called a tracheostomy. With Boyd’s help–he administers all medications daily via her feeding tube–my mother had accidentally overdosed on morphine several weeks before, and, after having spent two weeks in the hospital, decided to have a hole cut into her throat to suction out her secretions. This has prolonged her fight against Lou Gehrig’s disease, and made days like this one possible.
Mother doesn’t want me to leave, so she follows me out the door, the oxygen cord dragging behind her. When the cord runs out, she stops. She has gone as far as she can, and laughs because she knows this is true. I leave her there at the top of the stairs on a busy street in an upscale Northern California suburb, her 78-year-old breasts barely concealed from rush-hour traffic behind an assortment of faintly surviving chrysanthemums, one of which Boyd has tied up with a strand of excess plastic medical tubing.
I’m not sure how long she stood there in her stoned stupor before turning around and going back inside the house.
Later that week, I received a call from Tom, my mother’s social worker from hospice. Mother’s tongue is paralyzed and she hasn’t been able to speak for two years, so she had Tom call me to request that I attend a therapy session between the three of us at her home.
I went to her house the following Wednesday. Tom is a balding, middle-aged man who helps my mother navigate her complicated relationship with Boyd. It is challenging to take care of a person with ALS, and Boyd, who met my mother at the Renaissance Faire when she massaged his toes, has been at it far too long.
Ever since the overdose, they have employed in-home caregivers, but their relationship remains fraught with conflict; at various times, it has included the throwing of scrambled eggs and the involvement of adult protective services.
Although Boyd has been offered Tom’s support, he is vehemently antitherapy, and so all sessions involve only my mother and Tom. Today, however, she wants to talk to Tom and me together.
A large computer monitor has been placed on the dining room table, where my mother can keyboard her feelings. Mom, a trained family therapist herself, relishes being the center of attention. She begins the session by typing, “I am tired. I feel the spirit of death within me. I believe I will go soon.” She looks sadder and less stoic than I would expect, but the whole thing sounds somehow more official in front of the Buddha-friendly social worker.
Next, mother instructs Tom to talk with me about the problems Boyd is having with me. “What it boils down to,” Tom says diplomatically, “is that Boyd doesn’t want you calling the house quite so often when you arrange visits with your mother. It upsets his napping.”
I nod my head in compliance. “Is there anything else?” I inquire. Tom shakes his head. Having delivered his agenda, he asks if I might be having any feelings? “Well,” I say, wondering what I can hope to offer about a man who spends his spare time creating digital 3-D compositions of his cats. “I’m having a hard time getting Boyd to share any information with me about my mother’s condition.”
Tom smiles and suggests that it might be a good idea for Boyd to join the session. Boyd is in the backyard watering plants and listening to That ’70s Show on a large pair of brown headphones. He is also wired up to a doorbell that my mother wears attached to her gown. She rings this doorbell whenever she is choking on her phlegm and needs to be suctioned out by a tube attached to a large, noisy machine.
Tom comes back in the room and informs us that Boyd has declined his offer to join our conversation. He shrugs his shoulders.
A few minutes later, Boyd enters the house, walks over to my mother, his sandy, curly hair flopping madly above his head, and loudly says, “Ring your bell! Ring your bell!”
My mother reaches down, her mouth gaping open from paralysis, and presses the doorbell that is hanging from her robe. A loud shrill bell chime screams throughout the house and presumably is heard even louder inside Boyd’s headset.
“Mmm-hmm,” he says, nodding, and then he carefully reaches down to adjust the treble clef on one of several remote controls. “I just wanted to make sure the bell was working.”
Although my mother can still type words, expressing a lifetime of meaning, her husband can only listen to the bell.
The Byrne Report will return next week.