Aug 012016

“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.

 Leave a Reply

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>



This site uses Akismet to reduce spam. Learn how your comment data is processed.