ALL THE TIME IN THE WORLD
A serial memoir by Jean Fogelberg
Down the Rabbit Hole
We began 2007 with a trip to our local emergency room after Dan developed an excruciating headache. We tried everything we could think of to alleviate it at home, but when his vision became blurred, he finally agreed to let me drive him to the emergency room in Blue Hill, thirty minutes away. The doctor prescribed Prednisone and within a few hours Dan was sighing with relief as the pain began to subside. The remainder of our January calendar was a crazy quilt of scheduled Boston appointments, four upcoming birthdays, website photo shoots, and days earmarked for skiing.
I photographed the delicate shawls our friend Lauren was knitting and selling in her new shop in Brooklin. The website I’d created for her was as quirky and colorful as she was. On Monday the 8th, we drove to Boston for the first three days of the next clinical trial cycle. Our world-traveling friend Evelyn would be passing through the city, so she arranged a layover to spend time with us. We had a wonderful visit, taking her to our favorite places in between appointments. On Friday the 12th, Evelyn flew away and we drove back to Maine. With the exception of one bad night of back pain, the next two weeks were fun, busy, and without incident.
On Tuesday the 30th, we drove back to Boston for another three-day trial cycle. We had dinner at a French restaurant we liked on Newbury Street, then returned to the Back Bay apartment. Waking in the night, Dan got up to pee and tripped on the living room rug. He fell, hurting his collarbone and hitting his head on the side of the coffee table which, thankfully, was rounded, forgiving wicker. He asked me to feel his collarbone. “Does it feel broken?” he asked. I gently felt where he was pointing but could feel no protrusions. I said we’d have it looked at it when we had our appointment at MGH that afternoon, and we went back to bed.
The next morning, Dan’s head, neck, and collarbone were sore from the fall. Normally, he took Endocet, Ibuprofen, and Morphine, but today he decided to forgo the pain meds. During our monthly checkups, Dr. Kaufman or his assistant, Erika, would ask Dan to rate his pain levels, which were dulled by meds. This morning, especially considering the collarbone injury, he thought it would be best to give them unmasked pain levels for once, so they could more accurately assess his condition.
Through the park, then down Charles Street we walked, making our way to the Yawkey Building at MGH. We had purchased a wooden cane for Dan to use on the uneven, slushy brick sidewalks, but leaning on it hurt his sore collarbone so I carried it and held his arm tightly. All through the morning, the last of the previous day’s pain meds were leaving his body. By the time we got to the Yawkey building waiting room, Dan was in pain from his head to his lower back.
Our appointment that morning was with Erika. She started the evaluation and it quickly became apparent that Dan was in distress. She called for a wheelchair, and Dan was taken downstairs to a waiting ambulance that would whisk him to the emergency room. Erika rode with Dan and I ran the short distance, meeting them there within five minutes.
It all happened so fast. One minute we were eating apple strudel at the tiny kitchen table in the apartment, and two hours later Dan was writhing in pain in the ER as they monitored his vitals and increased the meds to give him some relief. Once they got the pain under control, a slew of x-rays and tests were scheduled. When they said a private room was available, I jumped at the chance and okayed the extra expense. Carrying Dan’s clothes, coat, and cane, I followed the gurney as they wheeled him through a maze of corridors and elevators to areas of the hospital we’d never seen before.
Over the last two years, I had grown to love MGH. As Dan’s discomfort increased, so had my responsibilities as his primary caregiver. Caring for a loved one who's looking to you for help is a huge responsibility. At first you’re just making smoothies and pill charts, and going along to appointments. Then, very gradually, you find yourself making decisions and providing care that could, quite literally, mean the difference between life and death. When it goes right, and your loved one looks at you with relief and gratitude, your heart soars. When it goes wrong, you carry the guilt with you forever. Walking into MGH, I always felt a gigantic weight lift off of my shoulders. Smart, kind people who actually knew what they were doing would take over now, and Dan would be okay.
We were given a room in Phillips House, a ward on the top three floors of the Ellison Building. A big window looked out on the Charles River and across to Cambridge. Twenty-two floors below us, toy-sized cars moved back and forth along Storrow Drive, and a snow-covered strip of grass ran between Storrow and the river.
The hospital bed was against the wall on the right, and a television was suspended high on the wall to the left. A small sofa with a pull-out bed sat straight ahead, under the window. Dan was set up with a saline IV bag hanging from a drip stand on the right side of the bed, near the bathroom. He was resting comfortably with a morphine drip, and a button lying on the bed next to his hand would deliver a dose of Dilaudid when needed.
Now that the crisis was past, I was thirsty and famished. I was given directions to the basement cafeteria, the Eat Street Cafe. There was a big selection of food, and everything looked good to me. I got us both turkey dinners, with gravy and mashed potatoes and green beans. As I rode the elevator back up, the doors opened on to different floors as people got on and off. A woman in her thirties stepped out onto a floor where a colorful mural extended down the hall, into what was obviously a children’s ward. I pushed the thought of sick children from my mind as the doors closed.
After we ate, I went to the Back Bay apartment for our pajamas and necessities. It felt strange to be making the walk without Dan, and the apartment seemed to be holding its breath as I showered and packed a bag. I was grateful that we’d brought cold-weather pajamas, which were perfect for hospital attire. I dressed in my travel clothes: comfy flat shoes, stretchy black pants, tank top, and black cardigan, good for walking, sitting, napping. Leaving the quiet residential area, I walked down Fairfield to busy Newbury Street and caught a cab back to the hospital. This was something else I’d grown to love during our time in Boston: taxi cabs, so handy when your arms were full and you had a ways to go.
Dan woke a few times in the night with pain, but a push of the Dilaudid button sent him under again. At 9:00 the next morning, we were both asleep when our door opened and Erika walked in with Dr. Kaufman. He looked directly at me as I sat up, bleary-eyed, in the fold-out bed, and said, “I knew you’d be here.” I was so shocked, I didn’t know what to say. In the past, his focus had been reserved solely for Dan.
Gently and briefly, they ran through the plan with us. Dan had, indeed, fractured his collarbone. And, as we already knew, the cancer had weakened bones in other areas of his body. They wanted to monitor his condition and keep an eye on him for a while. We agreed, and Dr. Kaufman said something about making decisions together. Looking at me, he said, “Because we’re a team, right?” Once again, I felt pleased that he was acknowledging me, but the change in protocol was somehow troubling.
That afternoon, I came back to the room with lunch and Dan was standing by the window, the rolling drip stand next to him. “Come here!” he said. Setting the food down, I went and put my arm around him. “Look!” he said, pointing down to the small strip of land running along the river. Covered in snow, it was an empty white rectangle, save for a few patches of grass peeking up around the edges. “What?” I asked. “That band,” he said, “they’re getting ready to play.” I looked again, willing myself to see what he was seeing so clearly in the cold, gray landscape. “There,” he said, pointing again, “unloading their gear from the van.” I didn’t answer. Exasperated, he said, “The van! On the grass!”
“Oh,” I said, going along with him, “yeah. Cool.”
That night, the lights in the buildings across the river looked like a carnival and Ferris wheel to him. The next day, the carnival was still there, as was the band, getting ready to play again. We always closed the blinds at bedtime, to block as much of the morning sun as possible. Dan woke me in the night, saying there was someone outside the window. He wasn’t frightened, he just seemed to want me to acknowledge that I saw them. I hadn’t actually said I could see his other hallucinations; I’d just marveled at what a dandy view we had. At first, I denied seeing anyone out the window, reminding him that the blinds were closed. After a while, though, I started agreeing, just so I could go back to sleep.
In the room next to ours, every available surface had been covered with translucent plastic. The patient was just a vague shadow in the shrouded bed. Medical personnel came and went in hazmat suits, looking like sci-fi beekeepers. Five doors down, some poor soul was admitted one night with catastrophic head injuries from a car accident. His screams echoed down the hall all night long. In the morning I woke to a deep, intermittent rasping. He had screamed himself hoarse, and still the need to alert the world to the horror of his plight continued. I knew that scream; I’d managed to hold it inside many times in the grocery store. I lay there, wishing I could go in and hold his hand.
Dan’s hallucinations continued. In the daytime, the Ferris wheel kept turning and the band continued to unload the van. At night, the mysterious being outside our window maintained their silent vigil. I felt like we had fallen down the rabbit hole.
Over the next few days, Dan was sleeping more and eating less, then he would get restless at night. I would stroke his hair or rub his feet to quiet him, but I was starting to feel the effects of sleep deprivation. Nurses came and went, and each day there were consultations and tests, but it was all background noise. My energy and attention were reserved for Dan.
I thought I’d be glad when the hallucinations stopped, but now I was worried that he was sleeping so much. I started keeping food on the bedside table and any time he woke up I would put a bite in his mouth. I’d rub his arm and talk to him; anything to keep him awake long enough to chew and swallow. He’d eat maybe three bites before grimacing with back pain. While I adjusted the bed up or down, he would hit the Dilaudid button, and I’d hurry to get one more bite of food in him before he disappeared again. I asked one of the nurses if the dose that the button delivered could be lowered, giving Dan enough to quell the pain without knocking him out. She said she’d check with the doctors, but no changes were made.
Once a day I would go down the hall to the visiting room to call home. Thank goodness for friends; they lightened my load considerably, especially as our Boston stay dragged on, longer than expected. Pauline was house/cat sitting for us, but had a trip planned, so Lauren offered to assume cat duties while Pauline was gone. Abbie and Fiona were buddies now and I missed them terribly, especially Fiona. Every morning I woke up and ached to feel her furry little body pressed against mine. I know I called my parents and a few friends, but have no memory of the conversations. Dan didn’t want his family contacted, he said he’d call his mother once all this was behind us.
On our fourth day in the hospital, Dan exhaled and didn’t inhale for six long seconds, then he gasped for air. I hurried to the nurses’ station to report this change, and one of them came to look. What she did and said is long forgotten, but my impression was that this new development was to be expected. I lightly rubbed his chest during the long stretches between breaths and, after a while, his breathing became steady but shallow.
Dan’s skin was pale and gray and there were dark brown circles around his eyes. I sat on the side of the bed and held his hand, squeezing now and then, hoping for a response. He was somewhere far, far away. As I stared out the window at the clear, frozen sky, it occurred to me that Dan was dying.
We’d known this day was coming; we’d had two and a half years to prepare for it. But I was not prepared. Something inside me said, “Not yet.” I told myself that a fair amount of denial was to be expected, and I sat with that idea for a good long time. Was this just me, resisting the inevitable? I reminded myself that I had promised to let Dan go when the time came. There it was again, though, that feeling inside, answering, “But it isn’t time. Not yet.” I would have to ask Dan. If he wanted more time, I would do whatever I could to get it for him.
I rubbed Dan’s arm and called his name until he woke up. “I need you to listen to me,” I said. “This is really important, are you listening?” He was nodding, and closing his eyes, but finally he drawled, testily, “Yesss, ahm lissning.” I don’t remember exactly what I said, but I asked about the drugs; did he want them to continue, or was it too much? After a few seconds, he opened his eyes and blinked to focus on me. He took a couple of deep breaths then closed his eyes again. I was starting to think he’d gone back under, when he clearly said, “Isss too much.”
I went and nabbed the first nurse I came upon. She looked impossibly young. We stopped by the bed and I said, “Watch.” Dan stopped breathing. After six or seven seconds, he gasped for breath, then he stopped breathing again. “He wants less pain meds,” I said, “he said it’s too much.”
She went and got one of the senior nurses and as we stood there, waiting for Dan to breathe again, I repeated his request. Up until now, I had bowed to their expertise, and they had been great. But where they saw a terminal patient who had entered their ward riddled with cancer, I saw a young man with an indomitable spirit who had been waltzing down Marlborough Street singing On the Street Where You Live, six days ago. I was not going to back down on this.
For whatever reason, the senior nurse nodded, said “Okay,” and went to make a phone call. Dr. Kaufman was out of town at an important convention and had left a colleague in charge, so she either called him or Erika. When she returned to our room, she dialed down the pain meds. I wanted to kiss her. Throughout this whole ordeal, it was the nurses who provided care and comfort, day and night. Without exception, they had been patient and kind, even when directed to deny our requests. I got the feeling she had gone to bat for us on this.
Dan stayed awake that night long enough to eat some dinner. When he pressed the button now, he relaxed but didn’t disappear. The next morning I woke to find him staring at me intently, like he was mad about something. “What’s wrong?” I asked. Scowling, he asked a question of his own:
“Who are you?”
I could hardly breathe. “Oh, Dan,” I cried, scrambling up from the sofa bed, “my love, I’m Jean. I’m your wife.” I reached for his hand, but he pulled it away from me, furious. Judging by the look on his face, I embodied every woman who had ever betrayed him. I knew he must be afraid, and I tried to calm him by saying that he had fallen down and broken his collarbone, and we were in the hospital, where he was being cared for. For proof, I pointed to the fabric sling around his neck. He wasn’t buying it.
Too late, I realized I shouldn’t have mentioned that I was his “wife.” He accused me of conspiring to lock him up here, so I could take his money and run off with my lover. As Dan talked, I noticed that his gaze kept switching from me to the television set suspended on the opposite wall. It was off, and I briefly wondered if he saw a hallucination movie playing on the screen. Talking to him wasn’t helping, so I went into the hall for help.
I returned with a doctor, and a couple of nurses came with him. I could see right away that Dan was starting to feel ganged up on. He was looking at the TV more frequently now. Since I was the main target of his ire, I left to stand in the hall. I could hear them calmly talking to Dan, who sounded cornered and defensive. It killed me to know he was feeling alone and confused, and I was unable to comfort him.
As another man went into the room, I started to cry; everything was out of my control and I felt so helpless. In a few minutes, the man and one of the nurses came out of the room. As she walked away, the man introduced himself to me. He was the Director of Nursing, and he suggested we go down to the visiting room. I sat down and he brought me some tissues and a bottle of water. I couldn’t stop crying. I was terrified that I’d lost Dan forever; that he would die believing he’d been betrayed his whole life. I just kept thinking, “Not like this, please, not like this!”
The Director was so kind. He explained that the loss of memory was not uncommon with pain medications, and it almost always passed within a day or two. His own mother had said some terrible things to him when she was in the hospital, including accusing him of trying to do away with her. The talk helped, and I pulled myself together, bolstered by hope.
Dan was still pretty worked up, believing he was being held against his will, so they arranged for a “sitter” to stay with him until he settled down. She sat in the corner, looking like a middle-aged nanny, kind but stern.
After eating dinner in the cafeteria, I hung around in the hallway outside our room for bit, until all was quiet. Once I knew Dan was asleep, I left. It was around 3am, and the streets and sidewalks were deserted as I walked to the apartment to get some sleep. As I neared Marlborough, I passed one of the tall wrought iron fences that Dan had leaned on, grinning and singing, and I lost it. Gripping the cold balusters to hold myself up, I leaned into them and sobbed. I kept seeing the look on Dan’s face, when he believed I’d betrayed him. I’d never felt so utterly alone.
After a solid six hours of sleep, a shower, and a cup of tea, I returned to MGH feeling human again. As I neared our room, I walked in on a bit of a ruckus. Dan was standing in the hall wearing his tweed jacket over cotton pajamas, and brandishing his cane. He was arguing with an orderly who was pleading, hands up, trying to reason with him. A nurse quickly gave me the gist of the disagreement: it seems they wanted to do a CT scan to see what was going on in Dan’s brain. This didn’t work for Dan just now, as he’d already made plans to walk to Italy.
“This is his wife!” the nurse said, loudly, and both Dan and the orderly stopped talking and turned to look at me. It was obvious Dan still didn’t know me, but this time something was telling him that he could trust me. “Let’s sit down for a minute and figure this out,” I said, moving to a couple of chairs in the hallway. Dan and I sat and the orderly waited, keeping his distance. I can’t remember what I said to Dan. I most likely reminded him that to get to Italy, he’d need a plane. I probably suggested he call Janet, his long-time travel agent so she could get him tickets. He was calmer now, considering what I was saying. The orderly said, “Mr. Fogelberg, we just want to help you get better.” Then he added, “Please, do this for your wife.” For some strange reason, “wife” worked this time, and Dan agreed to postpone Italy until after the scan.
Knowing the loud pounding of the CT machine would be frightening in his current state of confusion, and painful with his acoustic neuroma, I asked to stay with him. They put a big lead apron on me and, as Dan slid into the large tube, I held his ankle and gently squeezed so he would know I was there, and hold still.
After they delivered him back to our room, Dan seemed to forget about Italy. He was exhausted. He got into bed and, once we determined that his comfort level with me was improving, the sitter left. He had stopped looking to the blank television and I turned it on, hoping to find an old movie.
Dan’s memory returned quickly, and he recalled very little of what had happened before. However, when I asked him about the television, he was able to tell me about the ice otter that came and went from the room at will, leaving wet trails behind it on the floor. When it sensed that Dan needed help, it would perch on the top of the TV set, waiting for the signal to attack anyone who tried to harm him.
I was glad I hadn’t known about the ice otter earlier. One day, in a sleep-deprived stupor, I heard the faint sound of music. Without thinking, I went to the window to see if the band was playing on the grass. Dan’s vivid imagination was contagious. During those horrible moments when he was so angry at me, I was terrified enough without the fear that an ice otter might pounce on my head at any moment.
That evening, we met with Dr. Kaufman’s colleague, who asked how Dan was feeling. Much better was the answer, and then Dan mentioned his plans to sail that summer. The doctor said, “Yes, well, we’ll see if we can’t get you one more sailing season.” Dan looked like the man had slapped him. “ONE more?” WHO THE HELL was this man, deigning to give Dan ONE more sailing season? We never saw that doctor again.
We started taking walks up and down the hallway, to build up Dan’s strength, and he accompanied me to the basement cafeteria now to eat. He carried his cane most of the time, for balance. On Tuesday, we had been in the hospital for seven days. Dr. Kaufman was due to return the following afternoon, and we wanted to impress him enough to convince him to send us home.
I returned to the apartment for clean clothes and my hair-cutting scissors. As I walked through the public garden, I photographed the carved stone lions at the base of the Ether monument. Erected in 1868, it commemorates the use of ether as a painkiller, a historic moment in medical history. I walked back to the hospital during that magical time when the sun is setting and the streetlights are just flickering to life.
The next morning, I cut Dan’s hair and he showered and shaved, dressing in fresh cords, shirt, and cardigan. He had lost so much weight I had to use my scissors to make a new notch in his belt. When we walked into the hall, everyone commented on how good he looked and we both beamed. We had completed one turn up and down the hall, and were starting on a second, when we saw Erika and Dr. Kaufman getting off the elevator. They hadn’t seen us yet, so we kept walking toward them. If I’d had any doubts about how close Dan had come to dying, they were quashed by the look on Dr. Kaufman’s face when he saw Dan.
Back in our room, Dr. Kaufman told Dan how impressed he was with his recovery. So, Dan wanted to know, can we go home? Dr. Kaufman asked us to give him some time to consider this, and he’d let us know later in the day. In the end, he wanted us to stay one more full day, for observation, and we reluctantly agreed. On February 9th, ten days after being admitted, we anxiously waited to be released. We had dinner reservations at our favorite French restaurant and were really looking forward to it. In the late afternoon, a wheelchair arrived to take Dan downstairs. We bundled up our belongings and caught a cab to the apartment.
After tossing everything on the bed, we changed our clothes and went back outside. The whole world seemed freshly washed. A couple of warm days had melted the snow from the brick sidewalks, so we carefully made our way down Fairfield, to Newbury Street. As we walked arm in arm to the restaurant, we fantasized about what we were going to order. We’d both lost weight, and would be able to eat anything we wanted with no guilt. I could almost smell the pommes frites. We had reserved one of the comfortable booths on the second floor, and when the Maitre d’ grabbed two menus and asked us to follow him, I let Dan go first.
He made his way up the enclosed staircase, the cane in his left hand, the bannister in his right. Halfway up, Dan abruptly stopped and whispered for me to come alongside him. When I was standing on the tread next to him, he told me that his pants were falling down. I quickly reached inside his jacket and put my arm around him, gripping the back of his waistband and pulling it up. We emerged from the stairwell, looking like any other affectionate couple, and I held on until Dan slid into the booth.
I sat across the table from him and the Maitre d’ handed us each a menu. As he told us who our server would be, I held my menu up, not daring to look at Dan. The Maitre d’ wished us bon appétit, and we both thanked him politely. After he walked away, I waited a bit, then peeked around the menu at Dan. When our eyes met, I could see he too realized how close we'd come to disaster. If his pants had started falling while he walked across the room, it would have been extremely embarrassing. The thought of Dan, standing in this elegant French restaurant with his cords around his ankles was too much. We shook with giddy, stifled laughter until tears filled our eyes.
Although we’d been released from the hospital, they still wanted us to stay in town for a while. We’d arrived in Boston with clothes enough for three days, so we shopped. We had to take it slow at first because Dan tired easily, but we were having a great time. He bought suspenders to ensure there would be no mishaps.
Cooking in the little kitchen was challenging, but Dan was getting good at it. He loved the apple strudel from a market on Huntington Avenue, so every other morning I jammed there and back for the pastry.
At night we watched the History Channel, then we binged on Frazier. One of the local stations was running three-in-a-row episodes, late at night. Neither of us had watched the sitcom before, and now we were afraid we’d disturb the neighbors with our uproarious laughter.
We had fallen down the rabbit hole on January 31st. Now it was February the 12th, and Dan was lying on the apartment couch laughing at an episode of Frazier. I had brought a down comforter from home and folded it in thirds to make the couch as soft as possible. Looking at him from an armchair, I thought my heart would burst with love and gratitude. I thought I’d lost him, twice, but he fought his way back.
He was wearing a hospital sling; he was much too thin; and there were still faint shadows around his eyes, but he had never looked more beautiful to me. He felt me staring at him and gave me a sidelong look. “What?” he asked. “You’re so beautiful,” I said, and he laughed. “You are,” I assured him. I got my camera and took a picture, to prove it.
Next chapter coming May 8th
Posted May 1st, 2021 Copyright ©Jean Fogelberg 2021