Abiding Nowhere Press

I understood being the perfect caregiver was not necessary, or even possible. Nor was it a role I had ever come close to fulfilling. I accepted that being caring, alert, and considerate was more than sufficient. I had also begun to accept the long-term reality that Deloris would probably never return to her pre-stroke self. In order to care for her over this long and indeterminate time, I had to take care of myself. She and I were striving to develop a new normal, a life we could share and enjoy given the limitations imposed by her condition and my responsibilities.

As months became years, Deloris’s condition progressed, plateaued, at times regressed, and progressed some more. As the Ritalin took effect, she became increasingly more capable of independent action. This allowed me to suggest outings—dinners with friends, a day trip to the mountains, plays at our community theater, walks in the neighborhood. Accepting reality, developing a new normal, feeling grateful for my life even with all its challenges, and, above all, being able to laugh at this life’s absurdities gave me strength to keep on keeping on.

When I felt centered, I found caregiving to be a spiritual practice. One of my Buddhist teachers described a person’s being mindful of whatever she or he was doing and feeling gratitude for the opportunity it presented—even in so mundane a task as washing dishes—as a spiritual practice. He called it Kitchen Yoga. When I could care for Deloris with this consciousness and a feeling of gratitude, I felt engaged in the practice of Kitchen Yoga, although, given Deloris’s bladder condition, I renamed it Bathroom Yoga. With this mindset, I was nourished by the depth developing in my own compassion and spirituality. I realized how incredibly blessed our lives were and was grateful for it.

In a workshop entitled “Intentional Spirituality,” Rabbi Ted Falcon, our spiritual and religious teacher, said the only way to remove obstacles in one’s personal and spiritual evolution is to acknowledge, accept, and feel gratitude for them. Slowly, I was finding the inherent truth in this statement.

I have to admit, however, that as much I valued such moments of mindfulness, they were most often recognized after-the-fact, when I was journaling. In the moment, I was too exhausted by the seemingly endless chores—the necessities that kept the house running—to engage in any metaphysical musings on my life.

One morning, Deloris asked me, “What would make you happy?”

Something in her tone of voice and the way she looked at me when she asked the question brought me up short. When I was engaged in household work, she would often ask if she could help. This was the first time I could remember her posing her inquiry in this more general form. I knew it was a serious question, one grounded in her love. I wanted to respond at the same level of seriousness, but I was caught off guard. I said, “I don’t know. Let me think about it. I want to give you the answer the question deserves.” She nodded.

The question triggered a cascade of thought. I had no need and no real desire for material objects. New toys were not the answer. The happiness such objects engender is short-lived and superficial. Of course, Deloris’s getting back to her former self would bring me a lot of joy, but that would not have been a useful response, as its actualization was out of our control. The question was what would bring me happiness in our life now? Deloris deserved an answer to her question, and I wanted to give one to her.

That I couldn’t immediately articulate what made me happy didn’t mean I was never happy or was always sad. I wasn’t. I usually felt less than whole, but this was more often a passive and reactive experience. Happiness was not a place I had recently dwelt except for very short periods of time—visits, really. Trying to answer Deloris’s question triggered an introspection that allowed feelings of loss and the permanent change in my life to surface. Finally, it occurred to me that what mattered most to me were interactions with my wife on a day-by-day basis. The small things.

A few days later, while we were eating breakfast, I said, “Hon, do you remember asking me what would make me happy?”

“Sure,” she answered.

“Well, I know the answer. What would make me really happy is for you to cook me a meal, any meal, by yourself. I would be willing to shop for ingredients and help you in the prep, but you would do all the planning and cooking. Seeing you back in the kitchen, and then having the joy of eating what you cooked, would make me happy.”

Deloris smiled the crooked, imperfect smile she had since the stroke had altered her ability to control facial muscles. “Me, too.”

As she spoke, I glanced out the window and saw the sun breaking through the clouds for the first time in more than a week. That also made me happy.

Once again, I realized how grateful I was for Deloris and for our life together. The key to caring for her brain-injured husband, Alix Kate Shulman writes in her memoir, is amor fati, to love one’s fate. My fate with Deloris, our fate together, was pretty damned good. We were blessed in ways we had barely begun to appreciate.

Noise filtered into my consciousness, rousing me from sleep. It was the middle of January. The dark room gave little clue to the hour, since there are not many hours of daylight during a Pacific Northwest winter. I eventually realized the noise I heard was the front doorbell. In the middle of the night, someone at the door is never the bearer of good news.

When I turned on the entry light and peered through the glass, I was stunned. Deloris sat on the bench outside the front door, her face covered with blood! I opened the door, and the stranger ringing my doorbell wordlessly turned, walked back to his pickup truck, and drove away.

“My God. What happened?” Panic mixed with concern as I moved to where Deloris was sitting.

“I fell,” she said. “When I woke up, I wanted to work the crossword puzzle, so I went out to the mailbox to get the newspaper. It was really dark, and I couldn’t see very well. I was worried that I would fall off the side of the driveway.” I didn’t remind her that the driveway is flat. “I got out to the street and the paper wasn’t there.”

“That’s ‘cause it usually doesn’t come until around seven. You were out there hours too early.”

“I didn’t know,” she said. “Somehow I tripped and fell on my face. I couldn’t get up. I sat there in the middle of the street for hours. It was really cold, wet, and dark. I was scared. When I heard a car coming up the hill, I waved my hands. This man saw me and stopped. I told him I was trying to get to my husband who lived in the house over here. He put me in his truck and drove here. I was scared And cold.”

I shuddered, thinking of Deloris sitting in the middle of a darkened road, dressed in a dark coat, dark pants, hat, and gloves, appropriate clothes given the weather. No one driving up the hill quickly would have seen her. The truck must have been slow, because, as Deloris told me later, the driver didn’t have his lights on.

I helped my wife to her feet and into the house. In the bathroom, I began to wash off the blood and inspected the damage. It was obvious her condition warranted a trip to the emergency room. I felt relieved she was lucid enough to explain what happened since she looked like a domestic violence victim. Funny, the thoughts that go through your mind in times of stress.

“Why did you do that? You could have been seriously hurt or even killed.” I knew this was not a useful line of discussion, but I couldn’t help myself. I kept thinking of the what if’s and was annoyed and terrified.

“I couldn’t sleep and wanted to work the puzzle. I was so cold sitting in the road. I tried to stand up, but I couldn’t. I sat there, hoping you would help me up and back into the house. It was so cold; I was really scared.”

“I can imagine—well, no. I really can’t imagine. I need to take you to the ER. The cuts are too deep for me to deal with. Do you want anything to eat or drink before we go?”

“No. I’m okay. Just let me get a bit warm first.”

We drove twenty minutes to the hospital as the sun was beginning to make its presence known.

“That was pretty stupid what I did,” Deloris acknowledged.

“Yep.”

Conflicting emotions swirled around in my head. Concern about whether Deloris had suffered any lasting damage fought for space with wondering if I could have done anything to prevent the accident. My main reaction was one of disbelief; I couldn’t comprehend what had made Deloris decide to go outside in the middle of the night without a flashlight. She’d said she was scared sitting in the middle of a cold, dark road, unable to stand up. She must have been scared. I know I would have been.

“I should have taken a flashlight. Then I could have seen the way better. Of course, if I had my car keys, I would have driven, very slowly, to my 7:00 a.m. meeting.”

“What meeting?” I asked, knowing there wasn’t one.

“I can’t remember,” Deloris said. A few minutes later, she added, “Driving would have been pretty foolish, wouldn’t it?”

“Yep. Sure would’ve.” It was hard to consider Deloris driving.

An exam and a CAT scan in the ER indicated she had a broken nose as well as lacerations on her forehead, eye, and the inside of her lower lip. No other damage, physical or neurological, was noted.

The doctor told Deloris, “Your forehead looks shredded. I’m going to give you some local anesthesia to deaden the pain and then clean out the cuts and stitch you up.” He told her the injections might hurt a little because they would be made directly into the cuts, and that turned out to be an understatement.

Deloris howled as the needle was inserted into her forehead. Writhing on the exam table, she repeatedly pleaded, “STOP! THAT HURTS! OW! STOP.”

“Easy, hon. Take deep breaths. I’m here. Hold onto my hand and squeeze it when you hurt.” I attempted to calm her as the nurse and I held her steady and the doctor completed the injections. As the anesthesia took effect, Deloris calmed down and relaxed enough to allow herself to be cleaned and sutured. Her face black and blue, she was given prescriptions for some oral antibiotics. We returned home. She went to bed. A cup of coffee in hand, I sat pondering the morning’s events and wondering how to keep something like that from happening ever again.

After examining her the next day, Dr. Gehrke confirmed that Deloris had not suffered any new seizures, strokes, or other neurological damage. Aside from some contusions and lacerations, her only injury was a broken nose. The trauma probably slowed the progress of her neurological recovery.

Hallucinations followed the incident as well as a noticeable increase in confabulations. Deloris was sure other people were living in the house. In fact, she was convinced we were actually living in someone else’s house, although it looked very much like ours. “I can’t believe you were able to move all our stuff to this house and set it up like it was at home,” she said. “I’m really impressed. But whose house is it? How did you get them to let us live here?”

“It’s our house, hon. We live here.”

Deloris refused to believe my assurances. Since it didn’t seem to bother her to be living in what she thought was a “cloned house,” I let it go.

Along with increased mobility, as she recovered from her fall, Deloris experienced a shift in her sleeping habits. One night I was sitting at my computer about 1:30 a.m., doing some writing, when Deloris came down the stairs. She seemed confused. “Why is it so dark?” she asked. “It’s 1:30 in the afternoon.”

“Actually, hon, it’s 1:30 in the morning. That’s why it’s dark. You should probably be in bed. So should I, truth be told.”

“I’m hungry. And I want to watch some TV.”

I got her some cookies and a cup of tea, helped her get situated in front of the TV, locked up the house, and went to bed. Several hours later, glaring lights in the bedroom woke me up; Deloris had apparently turned on the overhead lights in the bedroom and was saying something about Queen Nefertiti’s mummy that, in my more-asleep-than-awake state, I did not understand. She got back into bed then and promptly fell asleep, leaving me wide awake and wondering how to get our sleep patterns back in sync, and what Queen Nefertiti had to do with anything.

When her nose was set and her face began to heal, she no longer looked like the victim of vicious domestic abuse. Rather, her face looked like a cross between a Japanese Kabuki mask and a raccoon. Having the stitches removed improved her spirits. Her pain was manageable with Tylenol, which allowed her to return to writing and a desire to do more around the house. Although I had to keep her focused in both activities, as she tended to become distracted, I was relieved that she was once again progressing.

“What would you like for lunch?”

Deloris didn’t hesitate. “Pie.”

“Just pie? Nothing else? A sandwich or salad?”

“Nope. Just pie. A piece of peanut butter cream and a piece of raspberry cream.”

Deloris and I were at a sandwich shop on the Everett waterfront, accompanied by her recreational therapist. The excursion was part of a program to help my wife become socialized and reintegrated into the community in preparation for discharge from the hospital. It was the recreational therapist’s job to facilitate the process, and this luncheon excursion was a first step. Deloris was able to walk from the car to the restaurant, read the menu, determine what she wanted, and give the waitress her order. Her ability to handle these seemingly mundane, but important daily activities with confidence and ability was encouraging. It demonstrated how much she had recovered in the six weeks since her initial hospitalization.

Deloris devoured both pieces of pie. They did look good. I rationalized that Deloris’s lunch was nutritious since it contained protein (peanut butter), fiber (also from the peanut butter), vitamins (raspberries), and calcium (cream filling). Equally important was the pleasure of being away from the hospital and free to order and eat whatever she wanted, a freedom she found especially delicious.

When we returned to the rehab center, Deloris’s first request was for me to escort her to the gift shop. She had chocolate in mind.

The day before this excursion, some friends had gotten married. When I received my invitation I had called them to ask if it included my wife. With obvious discomfort and more than a little embarrassment, they voiced a preference that Deloris not attend. They noted concern that their living room, the celebration’s location, was neither wheelchair accessible nor handicap friendly. The crowd of people might make it difficult for Deloris to concentrate, which, in turn, might make her uncomfortable. While they didn’t say this, I thought they also might not want the focus of guests, many of whom were good friends of ours, shifted from them as the wedding couple to Deloris. I assured them their decision was not a problem.

“Andi and Norman are getting married,” I told Deloris. “The wedding is at their house.”

“That’s great!” she said. “I want to go.”

“Of course,” I said. “You need to know, however, there are steps leading into the house. The bathroom has no grab bars. And lots of people will be crowded into what you know is a small room. Are you sure you are going to be comfortable?”

“Oh.” She thought about it. “Maybe not.”

“After they return from their honeymoon and you’re back home, let’s invite them for dinner and some island time. That way we can spend some quality time with them. I’ll explain you didn’t feel comfortable attending, give them a hug from you. And do the same to everyone else who asks about you.”

“Good idea.”

So, a possibly awkward situation was avoided.

On my way to the wedding, I stopped at the hospital, carrying the couple’s present. It was wrapped but needed a ribbon. My plan was for Deloris, our household’s designated gift wrapper, to finish the job, making her feel more connected to the wedding.

“Find me some long leaves,” she said.

“Why? What are you going to do with them?”

“I’m going to braid them into a ribbon and paint them.” Apparently, once Martha Stewart has taken up residence in a mind, she doesn’t leave—no matter what the circumstance. I struggled with how to get Deloris to simplify her approach and focus on the materials I’d brought and the short time frame we had. A few minutes later, she picked up a crossword puzzle and announced, “I’ll wrap the present later.” My observation that I was under some time pressure and didn’t have time for her to do it later had made no impression; however, the crossword puzzles had caught her attention and the half-wrapped wedding present was no longer an issue for Deloris—another potentially awkward moment avoided.

I wondered how the shift of focus had come about. Was the puzzle merely a mental distraction? Had the crossword puzzle crossed her field of vision, causing her to focus on it rather than the task she had been working on? This was a common enough occurrence. Or was this change in activity a way of asserting a bit of independence, a bit of control over her now diminished life and how she spent her largely prescribed time?

Whatever the answer, I finished wrapping the present myself. The mental image of Deloris’s concept of painted, braided leaves brought a smile to my face as I worked.

Driving back to the hospital after the wedding, I received a voicemail message from Deloris. This was the first time since her stroke she had called me. “Hello, this is Deloris. I want to talk with you. Please call me.” Her voice was a bit hesitant as if she was uncomfortable speaking into the void that is voicemail. Almost as amazing to me as getting this message was the fact that she answered the phone when I called her back, also a first. “Please pick up some chocolate covered pecans and bring them to me at home,” she said.

“I’m almost at the hospital and really don’t have time to go looking for candy,” I said. “I do have a surprise for you.”

“Can I eat it? Is it chocolate?”

“You’ll just have to wait and see,” I said. “I’ll be there in ten minutes.”

When I arrived, she was in bed, reading her journal. “I’m tired,” she told me. “I need to have ‘lie downs’ whenever I can. The therapists work me too hard!”

I laughed. After showing her pictures of the wedding I had taken on my digital camera and relaying messages of love and support from friends, I gave her the surprise—two pieces of chocolate wedding cake.

The cake quickly disappeared and Deloris went back to reading her journal. She ignored her dinner when it arrived.

“I’ve already eaten. I had wedding cake for dinner,” she said when I asked if she was going to eat. Who could blame her for choosing chocolate wedding cake over hospital food? Eat dessert first; life is uncertain has always been her guiding culinary principle. And as her life was becoming increasingly uncertain, perhaps eating wedding cake for dinner meant her decision-making abilities were returning.

The week after the wedding brought another excursion and another culinary adventure. For weeks, whenever the nutritionist asked Deloris what she wanted to drink with dinner, her response was either a martini or a glass of red wine. Neither, of course, was available through the hospital’s kitchen; nor did I think Deloris was totally serious. The exchange became a running joke. Now, Deloris was finally able to have a glass of wine with dinner.

We were at a waterfront restaurant having dinner with Ben and Fredericka, who were back in Seattle for a while. What made the evening memorable was not the conversation with old friends, or even serendipitously running into other friends at the restaurant. Rather, it was watching Deloris engage in previously normal activities, including ordering and drinking a glass of wine with dinner. Little variations can often result in more substantial changes. I was overjoyed by watching Deloris manage these rather routine activities with ease, something impossible for her to do even a week before.

At the same time, I was exhausted by the emotional ups and downs I was experiencing as I attempted to navigate the roiling currents of Deloris’s recovery. It was similar to what I’d experienced the few times I rode a roller coaster. There is the initial excitement when settling into the car. As the coaster slowly climbs the first incline, there is the feeling, the hope really, that this isn’t going to be bad. As I crest the initial rise and plummet down a steep incline, screaming in panic, I hope against hope the ride will be over quickly. Of course, it never is. There are more hills to climb, more descents and hairpin turns to careen through, more rapids around the next bend in the river to disrupt the calm enjoyment of life and scenery.

No matter how much I might wish the ride over, no matter how much I prayed Deloris would miraculously be returned to her pre-stroke self, I knew I would have to stay with this to the end, whatever and whenever that might be. I was here voluntarily, if not entirely of my own volition.