represent

Why I’m not painting

And therefore I looked down into the great pity of a person’s life on this earth. I don’t mean that we all end up dead, that’s not the great pity. I mean that he couldn’t tell me what he was dreaming, and I couldn’t tell him what was real.”

Denis Johnson

When I got to the hospital to tune my father’s institutional television into the last round of the British Open on NBC a week ago, we had an unusually lucid and direct conversation about whether he should just go home and let things run their course, rather than be transported to a nursing home tomorrow, potentially for weeks of rehabilitation and healing. It was both honest, but also hyperbolic—a way of simply telling me that he felt completely defeated and cared only about going home.  

“So we’re going to rehab after this to keep me alive?” he asked.

“Yes, to get you better.”

“Then why can’t I just go home and die?”

“I understand the question, Dad.”

“I’ve had a good life.”

“We want you around. We want to get you healed up and back to the way you were before you got to the hospital,” I said. “Get better for us. Do it for us. We miss you.”

At that, he started to cry, and I went over and put my arm around his head, the only way I can give him a hug anymore, since he’s usually seated—this time he was still in the surgical bed adjusted into an armchair position. I told him no one can force him to go to the nursing home, and it’s entirely his choice to have us bring him home or go into rehab where he was accepted for it. He seemed to find this reassuring, but I’m not sure he believed that we would listen to him. He had the power to choose his future, but he was willing to choose rehab. (Which he did and where he is now getting better very slowly but with more emotional balance.) Emotionally, at 92, suffering from significant cognitive impairment, unable to walk as a result of stenosis and vulnerable to pressure sores, he has often felt left out, disregarded in conversations, hovering at the periphery of whatever is happening around him. This has been the case for the past couple years. It’s intensely frustrating, an invitation to despair, for a former CEO, a man who ran a total of four different newspapers at various points in his career, who was honored with an award from President Reagan in the Rose Garden for his work in the volunteer sector as head of the Gannett Foundation, when that organization was still operating as a force for change in the communities served by Gannett newspapers. He was a pen pal briefly with Barbara Bush, and was conversationally acquainted with three presidents in his various roles at Gannett, Independent Sector, and the American Council for the Arts: Reagan, Jimmy Carter and even Nixon, many years ago, after he joined Gannett. All of that feels like a dream now, the life of a different person. Now, like a little boy with mournful eyes, he waits patiently as two women he met only in the past week come into his hospital room to lift him up and change his clothes, get him into a reclining chair, adjusting his catheter, clean his wound with a bleach solution. The pressure sore after debriding was the size of a shallow cupholder, looking as if it had been created by pressing a round cookie cutter into his bottom. It will take months to close up and will require debriding by a specialist. He feels nearly helpless and totally at the mercy of everyone and everything, and this would be some fresh hell for anyone, let alone someone who controlled organizations for a living. Now his life is subject to the prerogative of diligent people he hardly knows. His decline began when he turned 80 and began to feel the first indications of stenosis—funny bone-like reverberations in his legs as a result of pressure on the sciatic nerves branching from his spine. For years, he slowly lost strength and sensation in his legs, with operations that arrested the progress of the neuropathy and opened up circulation to his feet in order to save them from amputation. It has been a war against the disintegration of his body and brain, and despite everything the father we know and love is still in there, dwelling behind his eyes, joking, flirting with our mother, when he is at his best and most rested. Without warning, his wit can reach out to use through those shining eyes with a few words.

As the young technician got him into the device that would transfer him to the reclining chair she said, “We just need to change you.” Meaning his clothing. He glanced at me and said, “Change me into what?”

He was indulging in whimsy, but also wishful thinking, something along the lines of metamorphosis into superhero or maybe just a man forty years younger. But she missed the tone and went on innocently and kindly to explain in routine terms what she was doing. I said, “He’s joking.” I’m not sure she got it. This is the great pity of Dad’s time on earth now, as Denis Johnson put it: sometimes we can’t convince him of what’s real, and he can’t tell us what he’s trying to say.

Like other good quips, his joke was full of truth. He’s been changing, very slowly, into something rare and strange to all of us: a withered man in his 90s, sometimes gazing into space with lifeless, exhausted eyes many afternoons, who used to insist only two weeks ago on a glass of wine at dinner and was able to get himself out of bed, onto a power chair, into the bathroom, shave, take a sponge bath and then ride out into the kitchen to wait for my mother to get up and come downstairs for breakfast. Now he has lucid mornings and afternoons where he struggles through a swamp of somnolent confusion. But we are there, and the staff of the hospital is there, to make sure he is healing and regaining his strength. His biggest challenge is emotional: simply maintaining the will to live and fight through his cognitive and physical limitations in order to be a presence in the lives of his wife, children, grand-children and, on rare occasions, his great grand-children. Every day he has to remind himself that the struggle is worth enduring. 

I’m doing exactly what I should be doing as a human being, and yet still feeling slightly guilty for not being able to paint. I have had almost no time to do it in a sustained way across a long sequence of days and, least of all, across the succession of days, weeks, and months, the sort of habitual discipline required to produce the solo show I would like to assemble in two or three years. In the past six weeks I haven’t painted at all.

For the past year and a half, my days have been a kind of schooling in how sometimes the painting life means not being able to paint. That is, if you’re a human being with a heart. (And without that, what kind of painter would you be?) It’s a bit of a paradox: the greatest truths usually are full of contradictions when translated into behavior. I don’t mean losing the will or the skill. I mean the times when being fully human makes painting impossible. This is both deeply frustrating. At the same time, I feel at peace and at rest, almost, in this act of surrendering to what I can’t help but do. Helping my parents is what decades of prayer and meditation have trained me to accept cheerfully, almost avidly: the ability to not give a second thought to what’s morally and spiritually right. I still have reservations about totally giving myself up to the demands of being care-giver, but fewer and fewer of them now—though this role is unlikely to become all-consuming. I can see quite clearly what matters most here. And soon quite a bit of my time for work will return, given the trajectory we’re on with him.

My typical day has been a teeming welter of chores, assists, watchfulness, planning and problem-solving—not to speak of onerous clean-ups. Six weeks ago, my mother fell trying to get my father’s wheelchair out of the car in their garage. She broke her hip and crawled into the house to alert him. He called me and my brother and we began six weeks of daily assistance for them both, driving to the hospital and then to their condo to make breakfast and dinner for them—my wife made most of the dinners on our nights for cooking—until she quickly became able to make their breakfast, giving us the chance to call on them only once a day. But about that time Dad was becoming so weak that he fell while trying to get off the couch, and he was taken to the hospital where they found the pressure sore he had developed rapidly as a result of sitting for hours on his scooter—Mom had taken his seat on the couch we had covered with egg crate foam to prevent pressure sores. In all our attention to Mom, we took our eye off him and didn’t count the hours he was spending on the hard cushion of the power chair. Now he had become the crisis.

Earlier last week, I went over and got Mom a little later than usual, and we arrived at the hospital slightly after 8 a.m., thinking it would still be an early arrival, but the parking garage was full on the most convenient levels so I dropped her off and and parked where I could on the roof. She was waiting patiently with her cane, near the elevator, and we went inside. After a couple visits, she started looking forward to the wheelchair in the entry. On our first day after Dad was admitted, she scoffed at it. But she had done so much walking with the cane that she longed for the relief of the chair, remembering how her friend Lynn used her own recovery period after hip replacement to get her husband to wheel her around the airports and move to the heads of the line. Now, finally, Mom understood the simple pleasure of being cared for this way, after a life of putting her family first and caring for all of us before she cared for herself. We got up to Dad’s room and he was awake, but hungry. Again, they had prohibited solids and fluids in preparation for a biopsy in radiology. They were going to peer into his back with their x-ray eyes, as it were, in real time as they inserted a needle into his spine to take a sample of potential bacteria in tissue they thought was an abscess between a pair of thoracic vertebrae. They had been leaving him off antibiotics for days, hoping to let a lurking infection regain a foothold in order to get a reliable biopsy. At it turned out, Dad had to wait most of the morning to be wheeled down into radiology.

I had talked to Mom on the drive to the hospital about whether or not we could set up all of what he needed, the wound care and the therapy, at home. So, waiting for the arrival of his nurse and/or physician, I began to investigate how to get the equipment. I decided to check with Eastside Medical Supply on the availability of hospital beds and inflatable mattresses. The hospital was using a programmable mattress that would shift the air pressure underneath him regularly, rotating it around various quadrants or simply toggling it from side to side, in order to keep the pressure moving to different parts of his body and reduce the risk of future sores. So after I got Mom some coffee, I drove back into Brighton and stopped at Eastside. While one of the two reps worked at their computers, without greeting me, I started up a conversation by simply saying, “I’m looking for a hospital bed and an inflatable mattress.”

The woman at the computer shifted her attention partly to me, asking if I wanted to rent or buy. It went on from there, and I found the most expensive bed, for over $3,000 and a mattress for $1,500, as a tentative plan. It told her what we were hoping to do, how my mother was able to still be a caregiver at 94, and that we hoped to get my father home either for care after his stay at Highland or after a longer period of time after rehab.

“She’s 94?” she asked, “That’s amazing. That’s very rare.”

“Tell me about it,” I said. I looked at her name tag. “Marisa. Marisa I’ll remember. Like Marisa Tomei.”

“Yeah, just like her. The only difference is that she’s richer.”

I laughed. “And older! Talk to you soon.”

I then drove back to Allens Creek Valley and bought three cartons of fresh Southern peaches at Gentle’s Farm Market, one of them for my parents, and went back to the hospital. They had come to get my father just after I left, and he was still in radiology. I reviewed with my mother all the information I’d gotten and Dad arrived on a gurney. As he told us a bit later, the procedure had been agonizing, exhausting. He was a little groggy from the fentanyl they’d used to calm him down, but he told us how painful it had been, maybe as a result of the needle but also being stretched out on his stomach which caused lower back pain. In his fragile emotional state, everything has been overwhelming or angering or frustrating or, in reverse, incredibly compassionate and touching. He’s full of either love or despair, from moment to moment. Whenever anyone asked him how he was doing from that point on yesterday his response was usually, “Not good.” He cried a bit, intermittently, over his entire situation but seemed to be adapting to the reality and the necessity of being away from his family and undergoing treatment for his infection. Soon after he arrived we got a visit from his physician who said the biopsy had been successful. He spent time offering sympathetic words to Dad as well as explaining what would happen next: a sample that would tell them roughly what they were dealing with in a general way the next morning and then, a day later, the exact bacteria they needed to target with the antibiotics. (As it turned out, there was no infection anywhere in his body. The spot they thought was an abscess was just a penumbra, in surrounding tissue, of healing processes in the bone from a pressure fracture in the recent past. Their needle biopsy of the bone itself proved this.) I thought to myself, did they just do a spinal tap?

During the previous day continuing into this one, my brother had been searching for all the paperwork on my parent’s entire financial portfolio, the amounts of money invested anywhere, the name on the account, the nature of the life insurance policies, the person insured, and so on. The hospital needed all this in order to present my father’s case to the ten nursing homes we had selected as possible next stops on the journey back home. We had had a serendipitous visit from two representatives from Home Instead on Monday morning and, though they had expected Dad would be discharged and they would need to provide help immediately at my parents’ condo, we said, essentially, “Not yet. But eventually.” In the meantime, might they suggest the best nursing homes? They did, wonderfully, having had experience, first hand, in nearly all of them. My brother wasn’t finished with the financial paperwork, though he had spent a couple hours tracking down most of it the night before after he brought my mother home. There was something disquieting about how invasive this was: all of their most personal information about what they had worked their whole lives to save would now be in the hands of organizations that wanted access to that money.

Phil had arrived and had bought some sandwiches in the coffee shop downstairs. My mother shared hers with me, while we worked on soothing and calming my father, and serving him some of the hospital lunch that had arrived. I took pictures of the mattress and bed in his room, and did a Web search finding exactly the same programmable inflating mattress and a comparable bed for home use at a cost of just under $20,000. This professional “surgical” bed wasn’t needed. We could set up something just as effective for much less money. I visualized the next two days as everyone waited for the bacterial culture to grow, and realized I should either compile all the jazz my father once enjoyed on iTunes and sign him up for Spotify to recreate his old playlists. Or else just get him his laptop so that he could stream old shows and wander around the Internet rather than gaze listlessly at cable on the hospital TV or look out the window. He’d never once said he missed the computer. I’m not sure it even occurred to him, in the flux of events, that he could have had it at his side in the hospital, but he would want it eventually either here or in the rehabilitation facility.

For six weeks, my mother has been relying on a helper to clean the house, do laundry, and make a few meals. This companion had been crucial as Mom regained her ability to walk after the partial hip replacement. We’d had a stair lift installed so she could get up to her bedroom and down again. At 94, it was the first time she’d needed any assistance getting up and down stairs.

“I got a cramp in my leg last night. I’d told her to clean up the refrigerator. I said ‘My daughter-in-law told me to have you clean up the shelves in the refrigerator.’ She said, ‘I was thinking that needed to be done.’ So she cleaned the shelves but also rearranged things. I got the cramp and made it all the way back downstairs and . . . “

“No pickle juice,” I said.

“That’s right. You knew what I was going to say.”

We both laughed. Her home remedy for leg cramps has always been to drink pickle juice for whatever it contains, electrolytes, salt. Whatever is in it, it works. But no pickle juice to be found. It was hiding at the back of the shelf, as it turned out.

“So I drank some olive juice,” she said. “When my doctor asked me yesterday how are things at home I should have said, No pickle juice!”

“This is how you know you are a bona fide very old person Mom. You hate change. That’s what Dad said when I bought the better TV for you guys. Why do things have to change?”

As Mom dozed off, remarkably, Dad was wide awake, alert. This was a rare moment. I glanced at Dad and he smiled and I pointed toward her and he said, “I know.”

“You seem back to normal now Dad. In the morning you’re fine. You seem better than you have all week. In the afternoons you’re a maniac but in the morning . . .”

“I’m sane,” he said, with another smile.

“Yes, precisely. Or saner.”

He grinned, and Mom revived.

“You’re awfully patient honey,” Dad said.

“What about me?” I asked.

“You are too.”

“But not as patient as your mother,” she said, sardonically, wagging her finger at me.

“You guys can come by again for dinner at our place tonight,” I said to my mother and brother. “I could bring a little back for Dad if he wants it tonight. I’m going to go home and see if we have everything we need for a meal.”

I drove home to get the leftovers and told my wife that they would be having dinner with us. She said she had only one ear of corn but wasn’t going to drive back to Wegmans for nothing but corn, so I took both the ribs and a fresh bag of salad and moved our little supper to my parents’ condo. Meanwhile, my mother and brother had arrived there to finish the paperwork. I filled the bird feeder and attached monofilaments to the hanger as a way of repelling house sparrows—a trick I learned from a Google search. I watered the flowers. I weeded. I shampooed the carpet in the bedroom where the power chair has left what looked like footprints of feces in the pile—his accident had been the result of my father’s not being able to move fast enough after a dose of laxative the previous day. It had been quite a scene when my brother took them to the hospital, thanking me for staying behind to clean up the spectacle of shit in various rooms: covering the seat of his scooter with De Kooning smears, swiped onto fenders and wedged into the tires, pressed into creases in the seat, trailed across the hardwood kitchen floor, painted onto the threshold of the bathroom and tracked across the tiles, and worst of all, spotting the bedroom carpet like a footpath. I had managed to clean up nearly all of it in half an hour but finally realized—by scent—I’d missed what was pressed into the treads of the front tire, like Play Doh, so I drove the little battered vehicle out onto the desk and hosed it down as best I could. Now I tried to get what remained out of the carpet with some success.

After that, I fixed the couch with a sheet of underlayment beneath the cushions to make it easier for anyone to stand up from a seated position—fabricated wood to use under hardwood flooring that I usually cut up for the sides of crates to ship paintings to shows. If I had only done this when she’d come home six weeks earlier from her hip surgery, then my father wouldn’t have lingered half the day on his scooter and developed the pressure sore that will necessitate two or three months of healing—or more—and rehabilitation. It was a domino effect, as I put it to the attending physician. My mother was back home after hip surgery in four days moving around on her feet with a walker and then a cane. It was my father who succumbed to my mother’s injury.

I found Dad’s computer and tested it to find it more functional and quicker than I expected. Chrome was laden with parasitic extensions redirecting searches and eliminating Google as a search tool. So I did a search on how to disable them and removed everything but the ones Google itself had installed, as well as the ones for the security software I’d added a year ago.

At this point, they had finished the financial sleuthing, and I served reheated ribs. My brother Phil was ready to call it a day and drove home and, though we had ruled out another visit to the hospital—being yet another round trip that required half an hour minimum to complete—Mom and I decided to stop in one more time. We brought a little cut of ribs I could heat up in a stealthy way with a microwave I had found for visitor use in another ward—the “joint center” down a long hall and around a corner on Dad’s floor of the hospital. But when we arrived, Dad said he wasn’t hungry, though his hospital dinner was delivered in short order, and my mother coaxed him into eating by slicing his meat and feeding him with a fork. Emotionally he was back to his first years of life, and now, with the ritual of feeding him his dinner. When his nurse arrived, ready to dress his wound, we said goodbye.

“Are you leaving now?” he asked. 

“Yes, we will be back in the morning,” I said.

“But not until then?” he said, plaintively.

“Well, no because you will be asleep.”

The nurse chuckled. We told him we loved him. He told us he loved us too. I drove my mother back to the condo, my fourth trip to the condo of the day, made sure she had the peaches I’d bought for her, and, after putting her ice water up next to her bed and making sure the doors were locked and she was ready to get some sleep, I drove home.

This was just one day, without a minute available for painting. I wrote some of this post in the hospital room though and have kept working on it since he took up temporary residence in the rehab facility we chose. If all goes well, I may be able to get back into daily painting this coming week, even though I will still be visiting my parents every day to encourage Dad and assist my mother. On Monday we will find out when the rehab facility thinks he can go home and what they believe his prognosis will be. Yesterday he ate two full meals, larger than most of the meals he was eating even before his trip to the hospital. Life, for now, is getting better. 

When I got back, I took a half-smoked cigar from the car, and I smoked the rest of it on our patio, a rare treat. I gazed up into the leaves of our cherry tree, as I listened to an Audible book, and realized why the leaves of our aged cherry looked less perforated by spider mites this year. As I watched, titmice, chickadees, a woodpecker and even a catbird arrived and hopped all round inside the tree, pecking at the twigs and bark, apparently eating as many insects as they could find, almost working as a team to clean the tree and keep it healthy. It was wondrous, a glorious little moment of symbiosis—so many creatures working, even without knowing it, to keep other living things alive and well—something serendipitous for the good of both tree and birds. I was happy that I had helped all of this by keeping our bird feeders and bird bath full throughout the summer and encouraging the winged traffic through our property. In a life where nothing comes easily anymore, some things still just seem to happen on their own, thanks to the mysteries of how the world is ordered. Watching those birds I thought of Elizabeth Bishop: somebody loves us all. The challenge is to make those words true by trying to be that somebody.