ALL THE TIME IN THE WORLD
A serial memoir by Jean Fogelberg
On the Street Where You Live
The Caribbean vacation had been a great idea. We returned home relaxed and hopeful; ready to face whatever the clinical trial would throw at us. We still had a few weeks before it started, and in the meantime spring was busting out all over. daffodils and daylilies were emerging from the garden soil, and all along the Maine coast, antique stores and lobster shacks were preparing to open for the year.
I rose early one morning and went to my office to catch up on some work. When I say “early,” I mean nine o’clock. Dan and I still kept vampire hours, even though neither of us were performing. We had both been born children of the night.
I emerged from my mother’s womb at 11:34am, just in time for brunch. It’s still the time at which I feel best prepared to face the world. For as long as I can remember, my body clock was three hours behind everyone else in my family. Getting me up for school at 6:30am was always a struggle, as was settling me back in bed at 9:00pm.
Knowing sleep was still miles away, I would roll myself up in my bedding and pretend I was in the back of a criminal’s car, rolled up in a rug. I would lie still, memorizing every train track we crossed, every stop, change of direction, and church bell, so I would be able to find my way back later with the police, just like Nancy Drew. Reviewing landmarks was much more effective for me than counting sheep, which was pretty boring.
At some point, Mom started checking Disney albums out from the library. She would record them on our reel-to-reel tape recorder then play them in the hallway after we were tucked in. Eventually, there were maybe seven favorites, which Mom played at random. My sisters would fall asleep right away. I, of course, was awake for the entire tape, so I learned all the songs from 101 Dalmations, Lady And The Tramp, Mary Poppins, The Legend of Sleepy Hollow and Rip Van Winkle, and other classics. My mother, the bootleg pirate.
Dan came into my upstairs office in his red terry cloth robe, his hair rumpled from sleep. Normally, if he was feeling poorly or hadn’t slept well, he’d grumble, “Morning.” He somehow managed to make it sound like an accusation, complaint, and curse, all at the same time. Otherwise, he would say, “Hello my love,” or, if he’d already had coffee, “Hello my darling!” in his chipper Cary Grant voice.
Today it was “Morning,” and then, disapprovingly, “At it early, I see.” As he sat down in my old Morris chair near the big window, I told him which website I was working on. I had thirty clients now, five of whom needed continual updates.
The sun was well into the sky, so the light coming through the window lit the side of his face with subtle drama. “Oh!” I said, “Nice light!” I picked up my camera and, when he didn’t object, took a few shots. I ran through the shots on the camera’s LCD screen for him, and he agreed. It was nice light. He could see I wanted to take more, so he said he would pose for me, but only if I got him some coffee. I ran downstairs and got the Mr. Coffee going, and he returned to the bedroom to shower.
He returned, looking coiffed and natty in his jeans and cardigan. While I guided him, “Turn your head; look out the window; look at me,” Abbie came wandering in and hopped up on the side table next to him. I got a few shots of them together before she walked across his lap to the big wooden trunk under the window. Dan changed into his tweed jacket and Abbie remained, watching and listening, until we went downstairs to eat.
The Sutent trial began, and everything was in the hands of the doctors, nurses, admins and technicians. We just went where we were told to go, and did as we were asked. Each monthly cycle included a MUGA scan at the Vincent building, a bone scan at White, and a CT scan at Blake. There were Lab tests (blood samples, urine, weight, blood pressure, etc.) and meetings with Dr. Kaufman and Erika at Yawkey to discuss how Dan was feeling and what symptoms or side effects he was experiencing. Between each monthly cycle, the Sutent was halted for two weeks.
My birthday Lexus had been the perfect car choice, making the five-hour trips between Maine and Boston much more comfortable. We enjoyed the drive until we got close to the city, then the intense traffic was very stressful for two island mice like us.
The “Big Dig” had started in Boston well before our first appointment there, and it was still going on. Traffic was messed up, GPS directions inaccurate, and drivers frustrated and impatient. It was especially scary at night, because there were so few lights on the highway, and if it was raining and the pavement was wet, you were blinded by oncoming traffic and couldn’t see the divider lines. So, we made a point of always arriving in daylight and before rush hour, and since I had our route memorized, I drove the Boston segment.
Dan would drive three hours to the Kennebunk southbound service plaza and we’d stretch our legs and get coffee, then I’d drive the last two hours. When we finally found a parking space near the apartment, we abandoned the car and walked everywhere. On the drive home, I’d drive to the Kennebunk northbound travel plaza, we’d stretch, get coffee, and Dan would drive us home through the scenic New England towns along the coast.
In August, Dan’s old friend and road manager, Charlie Fernandez, came to Maine with his wife, Suzie. We took them sailing, and to our favorite Maine places, and the guys caught up while Suzie and I talked photography. With three photographers on board, there was a lot of shooting going on.
While photographing Dan, I shouted "Give me some Blue Steel!" and he emulated the "look" from the film, Zoolander.
On August 13th we had the second birthday bash for Dan in our new home. Suzie helped serve and Charlie made his famous Mojitos. Two years of stress and interrupted sleep were catching up with me, making me feel out of my body at gatherings lately. Sometimes I’d say things and they came out too loud, or I repeated myself while telling a story. It was embarrassing, but acting “normal” in a large group just took so much energy. It was the same thing in the grocery store. We went up and down the aisles, quietly discussing lists and options, and all the while I wanted to scream, “Somebody help us! Somebody do something!” The earth was bucking and cracking beneath our feet and everyone was walking around like everything was fine.
Everything was not fine. Dan was experiencing increasing side effects that would come and go, but the pain in his back was almost always present to some degree, even with the Endocet (oxycodone hydrochloride/acetaminophen.) His weight went up and down and when he looked bloated he was very self-conscious. One of the worst side effects was a temporary loss of taste. When that happened, he still enjoyed the act of cooking, but couldn't enjoy the fruits of his labors.
He could be cranky at times but, considering what he was dealing with, I was actually surprised that this didn’t happen more often. The acoustic neuroma made him sensitive to sounds, especially when ceramic plates or bowls were set on the granite counter. Sometimes I forgot while moving around the kitchen and Dan would wince and frown at me. I’d apologize, feeling terrible for causing him discomfort.
I had always worried when he sailed off on his own, but now that he was on multiple drugs that could cause vertigo, I was especially concerned. So, we developed a nightly ritual whereby he would call me at ten o’clock to let me know he had found a safe harbor for the night. We’d chat about our day and afterward I would get back to whatever book I was reading, and Dan would tune the radio until he found John Diliberto’s spacey soundscape, Echoes and The Thistle & Shamrock with Fiona Ritchie. It tore me up inside to think of him out there on his own, wrestling with his demons, but the time alone on the sea always seemed to do him good. There’s a point at which light conversation and pampering, however well-intentioned, become chatter and fussing.
These brief separations were good for me too. I would pack a lunch, and paddle my kayak out to a favorite island, or walk the beach with Abbie, looking for interesting rocks for my collection. At night, my sleep would be uninterrupted by the little sounds my hyper-vigilant ears had become attuned to. Even when Dan was trying to be quiet, the rustling of sheets or shuffling of feet across a carpet would notify my brain to wake, assess, and offer assistance if needed.
A bundle of furry joy joined our small clan that August. We’d been talking about looking for a kitten for a while but hadn’t acted on it. Our friend Betsy called to say her Snow-Bob/Desert Lynx cat was about to give birth. Snow-Bobs are generally tail-less, and we liked tails on our cats, so I told Betsy that if one of the kittens emerged female, with a tail, we’d take her.
That July, Betsy’s cat gave birth to five adorable striped kittens and, sure enough, one of them was a girl, with a tail. I visited her until she was ready to leave the litter, then brought her home.
Dan named her Fiona Thistledown Coakley, the surname in honor of her birth people, Betsy and Dickie. She was a little wild thing, leaping from couch to chairs, and doing somersaults in the air while pursuing cat toys. Abbie tolerated the upstart, and we delighted in her. When I woke in the morning, she would be pressed against me, lying on her back with her arms and legs outstretched. The sight never failed to fill my heart with gladness. She was so sure of her world; so confident nothing bad could ever happen to her.
In October my father needed surgery, so I flew to Kentucky to help out. While I was gone, Dan got an email from Elliott, letting him know that Crate and Barrel would be using Elliot’s music for their new national advertising campaign. Dan wrote back:
October 3, 2006
Many congrats on the Crate and Barrel spots. I'm very happy for you . Oh, callou, callay!
Very quiet here. Jean's in Kentucky helping her dad through surgery and I'm cat-sitting and getting the boat cleaned out and ready to put up for the winter. The leaves are gorgeous and the island has returned to its deliciously deserted self. Had a long, wonderful summer of sailing and am beginning to think about snow and gravity and all that.
Much love to you and Lynn,
The Frumious Bandersnatch (ret.)
My father felt a little guilty about taking me away, and after I returned home he sent Dan a “thank you” email:
Oct 13, 2006
She came to us from out of the sky, one day,
If we could have, we would have made her stay.
Thank you for sharing your sweet dove,
And remembering that she was first, our love.
The foliage was turning in Maine, and Fiona would go crazy on windy days, chasing leaves across the lawn and running halfway up the old oak in the middle of the yard. Abbie was the brave wanderer on the beach, but on the lawn she preferred to watch the new kid from a safe distance.
We were concerned about the oak; it wasn’t looking its robust self. We’d asked that the builders keep machinery as far as possible from it, and they mostly had. But a few feet of fill soil had been added around it to reduce the slope of the yard, and the arborist we hired said the soil, combined with the weight of machinery in the vicinity, may have compromised the tree. He injected oxygen and nutrients near its roots, hoping that would help. Dan had always loved that oak tree, and he felt terrible that we may have inadvertently hurt it.
During our next phone call, my parents thanked me again for coming to help, and I assured them I’d had a good time. My mother wrote to me the next day:
October 31, 2006
It is amazing that you had a good time while you were here. With all the nursing, scrubbing and everything else you did.
Went to see Dr. Gover yesterday because I felt so lousy. So went off all meds except the Thyroid and today I feel good.
Anyway, we are standing here with the door open waiting for you to visit again. Daddy looks good, I am not sleeping my life away and when you come again we will find something good to do. Do you think Dan would like to come, if so, we would really like to have him. Hope he is feeling fine. Bring him.
Gotta go shopping at this late date for decorations for Halloween tonight.
Love you, love you.
p.s. Thanks again for all the wonderful things you did for us.
Dan drove off in the Lexus one day, in search of a clock for his office. He called me at home from Winterport, where he was sitting in a drive-through car wash. “You won’t believe it!” he shouted, above the noise of the machinery, “The foam here sprays out in colors! Pink! Blue! Green! Yellow! You would love it, my psychedelic darling.” He promised to show it to me and, true to his word, the next time we went to Camden we had chowder at our favorite restaurant then, on the way home, we made a side trip to Winterport. Dan bought the antique clock he'd seen there last time and I bought a cool old stovepipe top hat. Then, we went to the car wash.
As the automated door began to rise, it felt like we were entering the Pirates of the Caribbean ride at Disneyland. When the nozzles sprayed their soapy psychedelia we sat transfixed, pointing out places where the colors ran together and saying “Wh-oh, look at that one!” like a couple of stoners. As the rinse cycle began, Dan turned to me, nodding his head and smiling like Joey from Friends. “So?” he said, “Do I know how to show a girl a good time or what?”
“I can’t think of any place I’d rather be,” I said, truthfully.
On New Year’s Eve, we were back at Gail and Rob’s annual party. At the stroke of midnight, we were standing in the kitchen. We yelled “Happy New Year!” along with everyone else and started 2007 with a kiss. When we pulled back, Dan smiled at me triumphantly and said, “We made it!” and kissed me again. We held each other in a long, tight hug and then lifted our champagne flutes from the counter. “To next year’s party,” he said. “Next year’s party,” I repeated, and we drank.
Back to Boston we went, for the next clinical trial cycle. We had fallen in love with the city. The apartment on Marlborough was perfect for us. You entered into the living room, with its wood floors and ornate Victorian fireplace. The bathroom was on the left, and the bedroom was straight ahead, on the other side of a dividing wall behind the couch. A long, narrow kitchen was on the right. You entered it from the living room, passed a small two-person table, then walked along the cabinets to the sink, which overlooked the back alley. From there you could turn left and you were in the bedroom, where stained glass double doors in the divider wall returned you to the living room.
We loved the historic neighborhood, with its stately brownstones. Many had beautifully tended little gardens, surrounded by wrought iron fences. Between gardens, brick walkways and stairs led to old front doors framed by transom windows and sidelights. The gardens and fences put Dan in mind of one of his favorite films, My Fair Lady. As we turned onto Marlborough Street, he would often burst into the song, “On the Street Where You Live.” Strolling with his hands in his pockets, he’d lean on one of the wrought iron gates and tip his cap, like Jeremy Brett did in the movie. I could clearly see the high school thespian whose dreams of acting on the stage were dashed in college, where the other young actors were clear-skinned and had already reached their full height.
When I first met Dan, I went to the music store to buy a couple of his CDs. I knew the big hits but wanted to delve deeper. None of the album covers looked like the man who had introduced himself to me that night at Cafe Romana. Later, an internet search yielded the same results: images that resembled him a bit, but not quite. Three years later, after I’d moved to the ranch, we were looking through a box of his mementos and photos. I pulled an old photograph from the box and said, “There you are.”
“Yes,” he said, not understanding. The box was full of photos of him. I didn’t know how to tell him that, from the first moment I saw him, this is how he had appeared to me.
The photo, taken by his friend Jon Asher, shows a teenage Dan wearing jeans and a tee shirt, his cheeks and neck lightly scarred by acne. He's goofing around, holding a broken piece of machinery like a sacred talisman, and a cigarette dangles from his mouth.
There he was, just as I'd seen him that first afternoon at Cafe Romana. He never glanced my way, just gazed into the distance, lost in a world of his own. And yet, something about him made an impression. When he walked through the door a few nights later, I thought, "There's that guy."
I knew just how Grazia felt, when her handsome prince revealed his true self at the end of Death Takes a Holiday. “Now you see me as I am,” he said, to which she replied, “But I’ve always seen you like this.”
Whether performing in concert, marveling at car wash foam, or walking down Marlborough Street singing “On the Street Where You Live,” Dan's life force was palpable.
It was about to be severely tested.
Posted April 24th. 2021 Copyright ©Jean Fogelberg 2021