The following was written by Little Patuxent Review Co-Publisher, Desirée Magney.
I was sitting at my breakfast room table a few months ago, talking on the speakerphone with our editor, Steven Leyva about LPR’s upcoming “Prison” themed issue. As the new co-publisher, I was furiously taking notes about the publication schedule. Our conversation then switched from the minute details of producing the issue to the prison theme itself. We spoke of the body as a prison and the artist, Lania D’Agostino, whose work represents those confronting issues of gender identity. But another type of bodily imprisonment immediately came to my mind and the pencil I was using to take notes froze in my hand as an image of my eldest sister Kathy flashed before me.
About two years ago, my sister, Debby, and I signed a sheet at the front desk of our sister, Kathy’s new assisted living apartment and began the walk towards her room. The odor hit me first – a faint hint of urine covered with a thick blanket of Lysol’s Crisp Linen scent. But it was as nice as these places can be and I had seen a number of them over the past few years. The carpet was forcefully bright and cheery – forest green to hide the stains but with red, pink, and white flowers to soften the look. I glanced up and on the wall to my left was a framed print, an exact replica of the one at my mother’s assisted living apartment building in Washington, D.C., where I had been her caregiver.
I hadn’t expected to be in a place like this again so soon. Our mother had passed away from Parkinson’s disease and Vascular Dementia in mid-March 2014. All my sisters and I joined together for the funeral in Pennsylvania, where we grew up. During those few days back in Camp Hill, it struck me once again how different we all were. Kathy with her dark hair, once olive-skinned, now pale but meticulous about her vitamins, herbal supplements, healthy eating, conspiracy theories, and Mormon religion. Linda, with her light brown hair and eyes to match, pinned like a sorority girl with a four-inch Catholic cross fastened to her long, loose, nun-like dresses. Debby, blond like me but blue eyed against my green ones, both of us lapsed Catholics and of no religious denomination but accepting of our sisters’ rights to believe in whatever religion or politics they chose, so long as we didn’t have to discuss them.
It was mid-October of that same year, when Debby and I met up outside Atlanta to visit Kathy. Around the time of Mom’ s funeral, Kathy had been diagnosed with carpal tunnel syndrome and was wearing a soft splint on her right forearm. The weakness wasn’t improving and when a friend commented to her how painful it must be for her to work all day on a computer, she responded she had no pain.
“Then you can’t have carpal tunnel syndrome,” her friend replied. “It’s very painful.”
Kathy sought a second medical opinion. By then she had started to experience weakness in her left hand and arm as well. After tests to eliminate a brain tumor and something called Stiff Man’s Syndrome the doctor told her the news.
“You have ALS.”
ALS, Amyotrophic Lateral Sclerosis, is more commonly known as Lou Gehrig’s disease. If you Google it, you will find it is often described as “the cruelest disease.” Over time, you lose your capacity to do everything, including swallowing and breathing, while your mind remains fully engaged and aware. Following a diagnosis, the life expectancy of an ALS patient is typically three-to-five years. In Kathy’s case the disease was progressing at a speed the specialists at the ALS Center at Emory Hospital in Atlanta had never seen. The only positive thing I could think of was that she had access to the best ALS doctors in the world. They could walk her through the progression and make practical recommendations along the way. But there is no cure.
Kathy was having a horrible time adjusting to the news. She was only 68. Her personal beliefs, and in particular her Mormon religion, called for her to prepare for all sorts of catastrophes. She was a survivalist who accumulated vast amounts of dried food and assorted gear to get her through the upcoming “end times” that were predicted. Her house and garage were packed with cases, cans, and plastic buckets with screw-on lids filled with items to help a small army survive. But all her best-laid plans were useless for this.
In early September, we spoke on the phone after a doctor’s appointment at Emory. She was placed on three medications. She was given a heavy-duty breathing machine at night to replace the small one she already used for sleep apnea. The bi-PAP would help prevent pneumonia. In a phone conversation with her soon after the diagnosis I heard her voice had already changed and certain letters were hard to pronounce.
“This stinks. Not fun. Hard to accept, Desorway.”
Her “r’s” had turned to “w’s” and she had to use fewer words to preserve her breath.
“I haven’t worn a bwa in weeks. I can’t figure out how to get one on. I look like a gymnast putting on my jeans.”
She had been devising ways to cope with dressing herself but had run out of possibilities. I used to watch her dress when we shared a bedroom growing-up. Eleven years older than I, I’d watch in awe as she’d elegantly hook her bra every morning, her back modestly turned towards me. She’d let a silky, full slip glide over her slim body. She’d sit down on the bed to carefully pull stockings over her legs and hook them onto her garter belt. Then, she’d sway around the room, singing the words to “Downtown,” the Petula Clark song she was going to dance to at the Miss Harrisburg contest. I idolized her.
“I told myself at Cwismas, I was finally going to have more fun. Invite people over. Do more awts and cwafts.”
She spoke haltingly, every word, every syllable, punctuated with a breath. Then her voice rose an octave.
“And just when I was going to start living, I started dying.”
She cried. Hard. Choking on mucus and saliva. Gasping for breath.
I had never heard Kathy cry. Not when our dad told her he refused to pay for college because girls shouldn’t go. Not when she had to leave college before graduating. Not when her husband came back from his third tour of duty in Vietnam, his body badly burned. Not when she divorced, three children later. I sat with the phone pressed tightly to my ear, trying to get closer to her, wanting so badly to be able to hold her. But all I could do was cry along with her.
The doctors told her to eat anything and everything possible, that nutrition was less important than calories because even breathing took so much effort. I teased her that I was envious.
“Eat some Häagen Dazs for me!”
During my visit with Debby, we drove over to her house with its large backyard garden. She had always taken such pride in them. The house was strewn with the remains of her belongings. Her children and friends had been sorting her possessions into categories – items to take to the assisted living apartment, items to place in storage, items to take for themselves, and items to sell in preparation for selling her house – the house she’d never be able to live in again. We sat in her basement sorting through rooms of her survivalist gear and food. She walked us through her now untended garden. She cried knowing she’d never be able to grow things again. We discussed the possibility of not selling the house yet and of her overseeing the planting of the garden next spring. But I wondered if she’d make it that long.
During the course of that weekend, her health declined further. We mixed her pills in applesauce to make them easier to swallow. Debby opened her mail for her since she no longer had the strength and dexterity. By Saturday evening, she could no longer stand up on her own. She needed me to help her dress. In the bathroom I had to pull down her pants, hand her the toilet paper, and then pull her pants up again. I washed her hands for her and cleaned-out her ears with Q-tips. I was mothering the woman who had been my second mother.
“Youw pwetty good at this,” she said.
“Well, I had years of experience with mom,” I reminded her.
The next time around in the bathroom, I wasn’t so successful. After I pulled up her undergarment and pants and was adjusting the back waistband, I heard Kathy mumble.
I looked around to her quizzical face and then down her body. In my haste to pull up her pants, I had neglected to move her limp arm out of the way. It was stuck down her pants in a suspiciously awkward position.
“Ah, what are you doing with your hand down there, Kathy?”
She laughed so hard she couldn’t breathe for a few seconds. It was good to hear her laugh. But those brief periods of lightness were overshadowed by her immense sadness and inability to accept what was happening to her. She told us one thing over and over that weekend.
“I’m so angry at God.”
The day after Debby and I left, Kathy was hospitalized for pneumonia, having aspirated food and water. A couple of days later, swallowing became so difficult that eating anything, let alone “everything possible,” became impossible. She had a feeding tube surgically inserted into her stomach. She was given a nutritional drink and her medicines through a syringe, injected into clear tubing that went into a port through her abdomen. She had to have her mouth suctioned out throughout the day, so she wouldn’t choke on her own saliva. And even more cruelly, her saliva production increased and every time she cried, mucus slipped down her throat choking her. Listening to her on the phone now required an interpreter. I arranged a time to call when her friend would be visiting.
She was discharged from the hospital and into a nursing home. She lived in a room with a much older lady who cried out for help throughout the day while my sister relied on a flat push pad. It had to be carefully arranged around the remaining crooked but still slightly usable fingers of her left hand. I saw those changes when I traveled back alone to see her only two weeks after my visit with Debby. Kathy’s losses accumulated day by day.
She seemed to have resigned herself to her new situation. She no longer told me how mad she was at God. I bought her some new tops that would be easier for the nurses to put on and take off. She sat in a wheelchair. She went to Physical, Occupational, and Speech Therapy. The roots of her hair were growing out – a pure white. She was permanently hooked up to oxygen. I watched her feedings and reported to the nurse that she wasn’t feeling well afterwards and asked if the nutritional drink contained milk.
“My sister is severely lactose intolerant, allergic actually.”
“They all contain milk,” the nurse replied.
Yet another hurdle.
At Kathy’s request, I met with two lawyers over two days to try to help her and her three adult children sort things out. She was grateful.
I brought old photos my dad took of us girls growing up. One of her and our granny reminded her that she spoke Polish before she learned English. She enjoyed the nostalgia.
I wheeled her around her new nursing home digs and we stopped in the library. I suggested she pick out a book. Even though she could no longer hold one or turn the pages, I said I could start reading it to her and then each of her visitors could pick up from where I left off. Her church friends and her daughter, Georgia, had been her near constant companions. I hoped that would last, that her friends wouldn’t desert her over time, even as I wondered how much time she had. She glanced over the titles and I pulled a couple of James Michner novels for her consideration. Then, on the bottom of a shelf I saw The Book of Mormon.
“I want that,” she said, “until Geowgia can bwing over my own copy.”
We went back to her room and I read a couple of chapters to her out loud. She corrected my pronunciation and explained the text in her now staccato voice. I suctioned out her mouth again before the nurse came in and got her ready for bed. Kathy lay with her head on the pillow and I leaned-in with my elbows bent on the bed beside her limp arm, whispering more words from the book until I had to leave. It no longer mattered what our religious or political beliefs were. She was my sister and I had always loved her. As I read, the muscles in her face relaxed and she gazed peacefully across the room.
The next morning, I dropped by to see her before leaving for the airport. She was still in bed and I held her limp right hand. She told me that a few nights earlier, she had felt someone else holding her hand.
“It was Mother,” she said nodding her head with certainty.
“I’m glad she was here with you.”
Tears welled-up in our eyes.
“No. No. We can’t do this, Kathy. No crying. Otherwise, we’ll have to suction out your mouth again.”
Her tears turned to laughter and I said I’d see her later. But I wasn’t sure I would.
I made it down to see her again. Although not much time had passed, she could no long move any part of her body except her eyes. She could no longer press a pad positioned by her thumb to call for the nurse because her thumb no longer moved. She used a communication device called a “Tobii” that tracked her eye movements and lingering gazes to spell out the words she could no longer speak. Kathy’s Tobii was programmed with some phrases, like “Thank you,” and “Please,” and “I need…” that were spoken in its mechanical monotone voice. But the machine often didn’t pick up Kathy’s eye movements fast enough and her frustration with it was palpable. Communicating even the simplest thing took seemingly forever, especially for someone who had very little “evers” left. At times she just gave up and closed her eyes, exhaling in resignation. We didn’t have much alone time during that visit. Her room was nearly always filled with nurses and other visitors. But before I left, when it was just the two of us in the room, she was able to position her eyes one more time and I heard Tobii convey Kathy’s last words to me three times over.
“I love you. I love you. I love you.”
Kathy passed away at age 69, just nine months after her diagnosis. During her decline, her own body imprisoned her – bar by bar – almost daily. While ALS confined her body it never trapped her mind. Perhaps it would have been better had she not been cognizant of her losses. But if her mind had deteriorated as well, I never would have heard her last words to me, the same ones I repeated back to her.
“I love you.”