The Golden Rule

I’d visited Mom many times over the last 20 years and knew from experience that whatever peace of mind I had gained meditating with the Dalai Lama’s group exiled in the foothills of the Himalayas would be challenged as soon as I walked in the door. Our relationship was based on an unspoken agreement to lie to each other and say, I love you. We lied about a lot more than that, we lied more than we spoke truth. She called the shots. I did my duty.

She’d emailed me in India and asked me to come ‘home’. I came. She lived in a townhome that she had bought for herself when my brother and I had graduated from High School. The single level condo my brother had recently bought for her on auction was in the same community and had been empty for many years. I was needed to organize the remodeling. My brother was busy with his work and family in California.

I took a cab from Phoenix Skyharbor Airport and walked into her living room with a single daypack and a determination to be cheerful and patient. I bent down to give her a hug as she sat in her Scandinavian swivel chair watching a Phoenix Suns basketball game against the hated San Antonio Spurs, the volume was at 45.

She dragged her eyes away from the TV to return my hug with a few pats of her hand on the back of my shoulder and shouted, “When are you going to cut that hair?”

“I’m almost 50 years old, when are you going to stop asking? Are they winning?”

“What?” She cocked her head as I repeated the second question more slowly, so she could read my lips. She was totally deaf in one ear and half deaf in the other with a hearing aide. “No. Shawn is out with an injury. I’ve missed you. Are you able to stay awhile?”

“I’ve missed you too. Yes. I will help remodel the new condo Jim bought for you. Have you seen it yet?”

“It is a stinky pigsty.” She frowned. “I don’t want any part of it. You can do whatever you want.” She turned her attention back to the game, “There is some Mac and Cheese in the freezer you can heat up for dinner.”

After the Suns lost another battle with the Spurs she went up to her room. She was a bit slower but did not need any help. It was probably the right time to transition to a new place, before the inevitable ills of old age took over. I figured a few months and the new place would be ready.

Over the next 8 months Mom held firm to her resolve to have nothing to do with the place. We never fought. We did not have enough love between us to muster even a petty quarrel. We shared a respect for civily doing unto others, and happily hung out in our own deep trenches.

Our separation had started the day I was born. She was convinced my father left her because the nurses had taken out her full set of dentures when she'd given birth to me. She liked to tell me that story over the years, insinuating it was my fault he'd taken one look at her gums and run out of the hospital to Sun Valley for opening day of ski season. And how the next day, she'd sent me home with her mother and followed him to the slopes so she could get pregnant with my brother. Dad had held out for the birth of his son 10 months later, and stayed two more years for good measure, but apparently could not get over the shock of having a toothless wife.

After he left we visited her sister in California. Mom learned her sister’s husband was a convicted child molester over lunch. She'd left me with him as my babysitter. When they returned Mom shook me hard willing me to lie, so I did, But she knew the truth. I thought lying for her would make her love me more. It just made a canyon between us that neither of us could bridge. We sort of talked about it once in my thirties, The conversation basically focused on me convincing her that I could remember things when I was 4 years old. After that we went back to pretending nothing had happened. I guess that was easier on both of us.

The renovations were almost done. It gave us the rare time together for sharing ordinary things like browsing thrift stores and trips to the grocery store. Everyone at the local grocer seemed to know and love her. One day she stopped to talk to a young man standing outside the store looking for handouts. She told him how to apply for student grants, how he could start at the community college. He was intent on her every word and Mom beamed back at him full of her passion to empower. During her years working at the State Department of Education Mom had visited every school no matter how small or how far, on every Indian Reservation and tiny town in the state of Arizona. It was impossible for her to leave any child uniformed about their potential. He helped her walk to the car and put the groceries in the trunk. He stood there waving as we drove away.

I’d seen her beaming like that many times over the years, at my brothers accomplishments, at random strangers, and at my brother’s friends during the High School parties she let him throw at our house. She would sit on the kitchen counter and counsel them about college options as they came for drinks at the fridge. Many of them listened. One boy was struggling with an alcoholic father and a lack of funds. She helped him get a grant and guided him to go in for accounting. He made a good life for himself and never forgot her help.

She was capable of compassion and love. But it took me a long time to make my peace with the way her beaming light fizzled whenever she glanced my way. After I gave up my career in Occupational Therapy and moved to India to pursue a life of meditation, I learned that a lack of attachment was a disorder in America but a virtue in India. I thrived for the first time in my life. People looked at me when they talked, they looked at me with kindness, with a shared interest in spiritual pursuits. It quenched a thirst I had not known I had. I learned to sit for months in silence and feel a deep joyful compassion for the world. Some might say I had run away, but I still feel I had run towards the life I was meant to live. I could look at her now without hurt or need and not judge myself wanting. Her disappointment and belief that my life was a failure no longer bothered me. I no longer needed her to understand me.

The day to move arrived. Mom went next door, to stay with her friend Barbara to escape the ruckus. The movers came early in the morning and shifted everything from her condo to the new place one street over. I helped them set up the beds and arrange the furniture and stack the boxes of clothes and books near where they needed to go. Then I unpacked and put her things away and hung the paintings and photos. In the late afternoon, I walked back to her old place and we drove to her new home.

She stood in the new living room discovering her favorite chair in front of the T.V., her pictures on the freshly painted walls. “There is less light in here than at my place.”

“Actually there is more light. There are sky lights.” I pointed to the windows above.

She glanced up, “They will make the room hotter in the summer and drive up the electric bill.”

“Did you have lunch with Barbara. Can I fix you something?” I asked.

“I’ve lost my appetite.” She sat down heavily on her swivel chair and turned on the T.V. I made myself a sandwich and sat on the back porch to watch the ducks gliding on the large lake we shared with the other condos in the community.

Over the next few months I noticed she stumbled more and I convinced her to go to her primary care doctor, and quickly learned why she had agreed to go so easily. Mom talked about her long list of aches and pains and how the sun was getting brighter and the traffic getting worse and other drivers ruder and how the legislature was not doing their job. I finally interrupted and told the doctor that Mom had been stumbling and more clumsy lately and I was worried about her fall risk. They had her walk the hallway and checked her blood pressure and said she was okay. The next week she fell and broke her hip. Rather than improve after the surgery she got worse. Her arms were weaker and her voice was often hoarse. I thought it might be from her yelling at me. She was used to living alone and did not realize she was shouting.

We revisited the doctor with my list of questions, primarily, after two months post hip surgery, why was she getting weaker. Her doctor diagnosed her with ALS.

Mom knew what was coming with ALS. Brian Song had been one of her favorite movies, she cried every time she watched it. But when we got home, she plopped on the couch and yelled for me to bring her a Pepsi and all the shirts in her closet. I brought the Pepsi first and could see the gleam in her eyes. She didn't need sympathy, Mom was on a mission.

Over the next few weeks she thrilled at directing me to fill bags for Goodwill. She rid herself of old shoes and sheets, picture frames and a garden hose. “Get rid of it” became her favorite phrase. She surprised me by the things she kept, like her divorce papers and her communion dress hand-stitched by her mother.

Despite Mom’s attempts to control her losses, every week ALS let her know who was really the boss in the riddance department. One minute she was riding me to wear lipstick and do something with my life, and the next minute I was instructing her how to use a universal hand splint to hold a spoon and feed herself. I realized how I’d inherited her bossiness in how I’d directed my clients as an Occupational Therapist. I felt grateful that at least I’d had the knowledge and freedom to make the house wheelchair accessible. Though she didn’t notice the lack of transitional barriers between rooms, I knew that it prevented her from repeated falls when she used her walker.

One day as I was showing her a trick to get her pants on easier, she said, “Just do it for me.”

I replied, “You’ll feel better if you keep your independence and it’s a way to also exercise.”

“I don’t want to. Just put on the damn pants!"

I could see she was fed up and so was I. I just wanted to help her in the way I knew how and she wouldn’t let me. In the middle of our stare down I suddenly understood her point of view. It was how I’d felt when she tried to control me and my choices and tell me how to do it right and I didn’t care about how good her suggestion was, I just wanted to do what I wanted and make my own mistakes. I knelt in front of her and lifted her heavy feet to place them in the pant legs and pulled the waist band up past her knees.

I smiled and asked, “Are you ready to stand? Hold onto me while I pull them up.”

She sat back down on the side of her bed. "You take such good care of me. It makes me remember how I treated my mother. I felt so ashamed of her accent like an old Polish Babushka, that I wouldn't let her go to Jim's wedding." Mom coughed back her tears and shook her head but couldn't stop. "When she got sick at the end, I didn't even visit her in Ohio."

I sat next to her and put a hand on her knee. She usually got annoyed by affection and emotion so I diverted the topic a little. "I remember she came out to Arizona when you got Valley Fever. She taught me The Lords Prayer. I thought my real father was God."

Mom released a bitter snort, and said, "Your father lived a mile away and never came to see you."

I laughed, "I know. But my Real Father answered my prayers and made it rain whenever I asked him to let me know he was with me, listening."

Mom smiled, "I remember you dancing outside in the yard like a joyful bird getting soaked to the bone. I never understood why you loved the rain."

It wasn’t long before Mom lost the ability to sit unsupported, We got her a new wheelchair that reclined and supported her head. Each day it got harder for her to swallow the soft foods I coaxed into her mouth.

One day we were out on the back patio for her post lunch smoke. My brother and I had fought with her many times as kids, begging her to quit. Her smoking was now just a rare thing she enjoyed. I lit the cigarette and held it to her tired lips. Her eyes opened wide then fell, betraying her sorrow. She couldn’t get enough suction to inhale. I drew the smoke into my mouth and blew it into her lips. It was my first and last cigarette. Her shoulders shook with either laughter or tears and she signaled her ‘No more’ with a facial expression that marked the end of her 65 year relationship with nicotine. I realized that even with all my meditations, she was a lot better than I was at letting go.

It wasn’t long before I had to roll her into a Hoyer Sling with a poop hole and jack her up over the bed with a pan underneath her swinging ass to catch the shit, all she could say was a hoarsely whispered, “Misery.”

After some time she had no speech at all. But her right thumb had just enough strength to depress a wireless doorbell velcro strapped in the palm of her hand. ALS left her mind untouched yet muted and jailed inside her inert body. Usually I knew what she wanted, but not always.

A week before she passed away she pushed the doorbell at 2 a.m. It rang at my nightstand, I went into her room and checked off the possible issues: a messy diaper, crinkled sheets, dry mouth, depressed pillows, a leg misaligned between bedrails. Nothing was amiss. I went back to bed and was almost asleep when she rang again. I repositioned her on her back and departed. She pushed the bell before I got out the door. I gestured and shouted into her halfway deaf ear, “I’m sorry Mom. I don’t know what you want. I don’t know how to help you. Please try to sleep."

She started to shake with frustration, her eyes wide and mouth stretched open screaming her wounded hoarse whisper and I leaned in nose to nose and screamed with her, until she stopped and tears rolled down our cheeks. By the next morning she was in a coma. She woke herself up laughing once during the next week but it only lasted a few seconds before she fell back into herself.

I’ve often wondered what she wanted that night at 2 a.m. It could’ve been to remind me to pay a bill or to wear lipstick once in a while, (her personal secret to happiness). But I’ve come to think I got it right when I spread open her flaccid arms, lay down under the quilt next to her, and slept snuggled into the fleshy truth hidden somewhere between her chest and shoulder, a forgotten place I’d known so well as a child.