Story Frame 26 – Operation Final Blessing

“I feel so helpless,” I told Karen in tears as I was leaving. “All I can do is to come back as often as possible and spend time with you.”

“That’s all I want, honey,” she said with matching tears, hugging me goodbye. “Just come and see me.”

And so launched operation Final Blessing – an imperfect storm of creative ideas and care and quiet moments together. Everyone contributed what they could. Martin gave me short leaves of absence, sometimes coming down to Florida with me to see Karen. Lou flew up from Belize to spend a week each month with her, bringing his gentle sense of humor and a stack of movies they could watch side by side together. Steve watched the kids, or they took care of themselves. Incredibly, friends gifted me their frequent flyer miles.

I have a kaleidoscope of images and memories from those six months in my heart.

The time I accidentally dropped one of Karen’s hand-blown wineglasses on the floor as I was washing it. I was devastated as the sound of it shattering reached the ears of my artist and design-loving minimalist sister. She turned her head and, to my great surprise, just smiled and said, take it easy honey, don’t worry about it. That almost made me feel worse. That was the I’m-living-with-cancer-there-are-bigger-things-to-worry-about sister speaking, not my perfectionist sister.

On one of her good days, Karen and I gently explored a large enclosed market of secondhand treasures she had discovered not far away. I have hung onto the two glass candle holders I bought that day, just for the memories they bring back of those last months together.

Helping my sister also meant taking her much beloved dog, Cloudy Day, to get her nails trimmed. Cloudy was a large, beautiful mix of breeds weighing about 80 lbs. The year before, I’d found an umbrella with clouds on the inside and given it to Karen in celebration of Cloudy, which delighted her. Cloudy was her only child and she loved her passionately. And because Karen couldn’t bear to hear her yelp when her nails were trimmed, she put me through the torment of dealing with that while she waited in the car, reading a book.

Sitting together on her bed one night, Karen propped up against the cushions, we went through a small basket of jewelry she’d collected over the years, all of it either vintage or handmade by artisans. She gave most of it to me, keeping only a few pieces to have “just a little bit longer.”

Eventually, Karen had to let go of the idea of living independently and moved into Mom’s house. Mom gave her the master bedroom, moving her own furniture out so Karen could have the comfort of being surrounded by her three large bookcases of all the art books she’d collected. She dressed every morning, then held court from atop the neatly made bed on the days when making her way into the living room seemed beyond her strength.

On one of those atop-the-bed days, she’d asked if I’d do her a favor.

“Sure,” I replied automatically.

“Would you change my dressing for me?” she said. After her recent mastectomy, the pads and odor-absorbing charcoal filter needed to be changed regularly.

“Sure,” I said again. “Just tell me what to do.”

She gave me directions, watching me intently as she did – and not, I later realized, because she thought I would do something wrong, but because she knew what I was about to see. She knew it was a big ask.

I climbed up next to her on the bed and unbandaged her, trying not to flinch or show any expression as I gently peeled back the reeking pad from what looked like a blackened bombsite where her left breast had once been. I had to bite back tears at the sight of my sister’s once lovely body, which now looked and smelled like the plague. Having never experienced it, of course, I didn’t actually know what plague victims’ bodies looked like, but surely it might be a hellish nightmare like this.

Following her quiet directions, I gently cleaned the area, applied a fresh charcoal pad and bandaged her up again.

“Thanks for doing that honey,” she said. “I know it was tough.”

“I love you,” I said, looking at her. “I’d do anything for you.”

The words came more from my heart than my mouth, and they came without thought or warning. This wasn’t something we ever actually said out loud to one another. Tears came into her eyes as if she was only just now realizing how much I cared for her. Difficult as it was, that moment of expressing love was another final blessing.

That evening, we all piled into her room to watch one of the movies Lou had rented. Karen, fully dressed and wearing some of her artisan jewelry, reclined on the bed. Mom, Lou and Martin brought in chairs from other rooms to sit on. As for me, I chose the premier seat in the room. I climbed up on the bed and settled myself carefully next to my sister because I was her little sister. And I could claim that spot next to her like no one else could.

I don’t recall what film we watched. What I do remember is looking at everyone’s faces gathered together in this room, all there because we loved Karen so much. All of these moments, all of these final blessings – we would not have had them, I kept reminding myself through my tears, if she’d died in a car accident.

In celebration of my brother’s 50^th birthday, Mom decided to gather everyone for a small dinner at a nice restaurant in Sarasota. Martin came with me. Lou flew up from Belize. Karen dressed up in one of her favorite artisan-made Blue Fish outfits and put on a little make-up and jewelry. She looked stunning and normal, as long as you didn’t look too closely. But by then, her left arm was painfully swollen, a result of trapped fluids with nowhere else to go, post-lymph node removal. Someone unintentionally brushed up against her in the restaurant, and I saw the color drain from her face as she very nearly screamed out in pain.

By then, she was living in hospice. Karen, the most intuitive of us all, was always a step ahead. After a few months at Mom’s, she announced one day she’d like to drive over to the hospice facility to take a look at it. My mother balked. There’s no need, she told Karen. You can stay here, I’ll take care of you.

But even with her own pain and fears, my sister was prescient of the emotional toll her illness was taking on others, especially Mom. She didn’t want to die in Mom’s house, she told me. She didn’t want to do that to her.

Karen persisted. We’ll just go for a look, she told Mom. Eventually, my mother agreed, just to humor her. Off they went, my sister taking nothing with her but a book.

The room hospice had available was spacious and filled with light from the many windows which overlooked the stream and grove of orange trees just outside. There was even a small private terrace. Karen looked around and decided it would do.

To my mother’s complete surprise, she announced she was going to stay. Could Mom please go home and bring back some of her things later?

That Karen had looked at the room with the full awareness that this was where, in the weeks to come, she would die, haunted me. I cannot imagine the courage, heart, presence of mind and selflessness it took for her to make that decision. Despite having all of us close at hand, she was so alone inside her thoughts and her ravaged body. And, short of a medical miracle, there was nothing any of us could do about it.

My mother, realizing she’d been out maneuvered, complied. When Karen moved in somewhere, she moved in. And a room in hospice was no different.

Within twenty-four hours, the room was transformed. She had gently instructed the hospice staff how to better arrange the furniture in the room (she was right about that) and had Mom bring in her own Japanese paper lamps to replace the hospice ones, filling the space with a soft glow. She also had Mom bring over a few books, some of her favorite clothes, her art supplies and sketchbook, and a beloved and colorful kilim rug, which she draped over a table (most likely to hide it.)

Mom made sure she never spent the night alone there. A rotation of friends visited. Her best friend Charlotte Kellogg, who lived in Palm Beach on the other side of the state, came frequently, sometimes with her husband, Chris.

Chris grew roses and often they would bring them by the bucketful, filling Karen’s room with them. Mom and Charlotte took turns playing Scrabble with her.

Sometimes there were several of us with her at the same time, which was fine, except that none of us were very good about keeping track about who’d given her a push of morphine, and when. During one of those overly helpful times, Karen announced she wanted to go outside for a walk. We bundled her into a wheelchair and brought her out into the gardens under the old orange trees. Suddenly she motioned for Chris to stop pushing her wheelchair.

“Look at that!” she said, looking up at the fruit hanging in one of the trees. “Can you see those letters?!”

We glanced at the tree, then at one another, trying to figure out what she was talking about. When no one responded, she got a little impatient with us.

“There!” said Karen, adamantly, pointing to one of the oranges. “That’s an “e.” And that next one,” she said pointing to another orange, “that’s an ‘s.’” She was smiling up at the tree, happily trying to re-arrange the letter tiles she thought she saw.

“What words can we spell out with all of the letters in this tree?” she asked.

That’s when it occurred to us that in our anxiety and love to make sure Karen was as pain free as possible, more than one of us had pushed the little IV plunger in her arm and had, accidentally, likely tipped the scales with her dosage. But she seemed happy, and even happier when she looked around and realized she’d said something that made us all laugh.

That moment was another final blessing. I was beginning to count them like prayer beads.

And then there was the pillow talk. In one of her many artist lives, Karen had developed a passion for needlepoint. She created amazing contemporary designs, needling them mostly into pillows. She made one for all of us, each one different and very much us. At one point, she and another artist friend opened a shop in the trendy, aptly named town of New Hope, New Jersey – to sell not only her own work, but also yarns and kits.

Mom kept her pillow on the sofa in her living room. In lovely shades of green, cream and gold, there was a row of symbols for each of us in the family: Dad, Mom, Karen, Pip and me. During her last weeks, Mom later told me, Karen picked up the pillow and, tracing her finger over the squares, said her thoughts out loud – our names, our present status and what she thought the future held for us.

“Mom and Dad – divorced,” she said. “Pip – divorced. Kristin, in love with Martin and probably going to get married. And Karen and Lou,” she said, “divorced but in love forever.”

When Mom relayed this story to me, I thought it weird my sister had added the word ‘probably’ to the story of me and Martin. As far as Karen knew, Martin and I were getting married.

Coming up next … Drinking Jack Daniels in Hospice