When Your Whole World seems To Fall Apart
I don’t even know where to start this blog entry. So much crazy, random stuff has happened over the last couple weeks, and I want to just get things out. So I’m not going to worry so much about form, or about writing well, and I may veer off into stream of consciousness sometimes. Bear with me. I guess things started to fall apart almost two weeks ago, on November 8th. My parents drove up to Boston to see a bunch of specialists—eye doctors, my father’s oncologist, etc. I had told them I would call that evening to check in. Geoffrey was scheduled to see a pediatric retina specialist that morning at Columbia, and we had joked that we’d have to compare notes.
I called my mom at about 6 pm. “What did the doctors say about Daddy?” I asked.
“Tell me about Geoffrey first,” she said quickly, and I knew she didn’t have good news.
“There’s not much to say,” I said. “The guy was extremely positive and basically echoed what Dr. L (our local eye doctor) said. He thinks Geoffrey’s corrected vision will probably end up about 20/70 or 20/80, and that Geoffrey will be able to play soccer and ride a bike and possibly even drive a car. But Mom, I want to know about Daddy. What’s going on?”
“They think his vision is completely gone,” she said. Her voice was choking up and I could tell she was trying to keep it together so my father wouldn’t hear. “One of his retinas is detaching. The eye specialist was practically in tears himself. They don’t think it will come back. Ever.”
“Oh god,” I said. Somehow I had known that that was going to be the final verdict, but to hear it confirmed, to know it was stark cold reality, was just so hard. “How is he taking it?”
“He’s devastated, Hallie,” she said quietly. “Just devastated.”
I wanted to talk to him, but he was half asleep. When I hung up the phone I started to cry, and my sister called me a few minutes later, also crying. We talked about what it would mean, about both of us making more trips up to Amherst to help out my mom, about looking into getting him occupational therapy and vision therapy up there, about what we could do—if anything—to make things better.
I was trying to avoid having a complete melt down in front of the kids, but it was so hard. Every time I thought I had myself under control I’d start to think about him not being able to drive up to visit us, or actually see his fifth grandchild (my sister is due Christmas day) or teach all three of my little ones how to ride a bike.
I spoke to my father the next day. He was extremely dehydrated and his oncologist had ordered IV fluids. He sounded so weak, so tired, but he wanted to know about my kids, how they were doing, how Jamie was handling paternity leave, and then he asked me about my awards dinner Thursday night.
I had almost forgotten about it. About a month ago, I learned I’d won an award from the Newswomen’s Club of New York for a two part series I did for Health magazine on dietary supplements. I’d been shocked to win it, especially when I learned that the other award recipients in my category included renowned journalists such as Gina Kolata from the New York Times and Maureen Orth from Vanity Fair.
“I am so proud of my daughter,” he said, and in that moment his voice sounded more like the father I knew. “On Friday, I want you to call me and tell me everything about it.”
“I will, Daddy,” I said.
I called home on Thursday, to check in on my father, but my mother said he was sleeping. She sounded tense and overwhelmed, and I decided on Saturday I’d leave all three kids with Jamie and a sitter and drive up myself to make sure they were okay. I meant to call later that day, to check in, but as always things got incredibly chaotic at home and between dealing with three snotty noses and getting ready for the black tie dinner (and trying to calm down my husband after he ironed a hole in his tux shirt) I lost track of time.
The dinner was amazing. Jamie and I hadn’t had a night out with other adults in months, and it felt surreal to actually sit with my editors and discuss work topics. I’d spent the last six months essentially as a stay at home mom, and to be back in the company of such venerable women—Diane Sawyer and Maria Bartiromo were among the honorees—made me feel pretty damn good.
The next morning, I called my parents. My father was asleep, so I called back again a few hours later.
“He’s just waking up,” my mom said, and passed the phone to him.
Right away, I knew something was wrong. His speech was heavy, slurred, and he seemed very out of it.
“How are the little ones?” he asked. I started to give him a detailed run down of everyone’s activities—which he usually loved—but stopped after a few minutes when I realized he wasn’t really listening. I wondered if even just talking on the phone was too much for him.
“How are you, baby?” he asked.
“Good,” I said, feeling more and more uneasy. “I had my awards dinner last night. It was great.”
“Awards dinner?” he said. “What awards dinner?”
I was utterly floored. My father, with his razor sharp memory, never forgets anything, including obscure battles of American history and pet birthdays. But before I could answer, he said simply, “I’m tired, baby. I need to rest. I’m giving the phone to your mother.”
My mom came back onto the phone. “Mommy, what’s going on with him?” I asked. I was trying to be calm, but I could hear my voice rising higher and higher into hysteria. “He seems totally out of it. He can’t remember anything.”
“He’s fine, he’s just tired,” she said, and abruptly got off the phone.
I could not stop thinking about my father for the rest of the afternoon. I knew something was terribly off, and I was very tempted to just get into the car and drive to Amherst right then.
Finally, at 4 pm, I decided to call the house again. The dog sitter answered and burst into tears as soon as she heard my voice.
Apparently right after she got off the phone with me my mother had decided to call 911. When the paramedics came, my father collapsed. He couldn’t remember who he was, or where he was. “He didn’t argue when the paramedics put him into the ambulance,” the dog sitter said hopefully. “Maybe that’s a good sign?”
It was actually a terrible sign, knowing my father, but I didn’t have the heart to say anything.
A few moments later, I reached my mom. My father was in the intensive care unit. He was severely dehydrated and they were worried that it would damage his kidneys. I couldn’t talk to him; he was delirious. Yes, he seemed stable. No, she didn’t want me to come out tonight. My brother in law was flying in that evening anyway to pick up their dog and bring her back to Virginia, so he would be there to offer support.
The next morning, I got into my car at 8 am and drove to Amherst at 90 miles an hour.
When I got into the ICU the first thing I saw was a small herd of doctors and nurses, clustered together in the hallway, heads together in front of a computer screen in intense conversation.
I walked up to them. “I’m here to see my father,” I said. “Dr. Levine.”
They paused and looked at each other nervously.
“Your mother is in my office,” one of the doctors said, pointing to a room. I noticed he didn’t meet my eyes.
I walked in and found my mother on the couch, crying. “Why can’t it be me instead?” she kept asking. Mark, my brother in law, was sitting next to her.
Apparently in the middle of the night my father had gone into acute kidney failure and no one had bothered to call my mother to let her know. When she and Mark arrived in the morning, they found my father unconscious and on dialysis.
“I don’t think you should see him,” Mark said evenly. “It might upset you.”
“I’m fine,” I said, but he was right. I wasn’t prepared for what I saw. My father, swollen and bloated, hooked up to a slew of machines with drool coming out of his mouth. His whole body was shaking and I watched in horror as his arms and limbs flailed about convulsively. His hands were in mitts, to stop him from pulling wires out.
“You can hold his hand,” one of the nurses said helpfully as he came in. “It seems to soothe him.”
Needless to say, I was a mess. I held his hand and cried, and my mother came in and cried, and Mark, my stoic, unflappable brother in law cried. I called Jamie and told him to cancel his trip to California; I was pretty sure my dad was dying. Mark called my eight months pregnant sister and told her to get in the car with their daughter and drive up to Amherst. My mother called her sister and my father’s brother and told them to get on the next flight to Bradley airport.
The big question was whether or not to move him to Brigham and Women’s Hospital, in Boston. That’s where he had his stem cell transplant a couple years ago and it’s right next door to his cancer specialists at Dana Farber. I thought yes. My mother was scared to transfer him over the weekend, fearing that would leave his care in the hands of residents. “At least here the doctors know him and know his history,” she kept saying, but I wasn’t so sure. I remembered years ago, when my sister was starting her freshman year of Amherst college and my father called one of his old colleagues in Boston to ask for names of local doctors in case she got sick.
“You’d be better off having her go to a vet,” his friend said, and he was only half joking.
My feelings were only reinforced when the local oncologist showed up. She had long brown hair pulled back into a ponytail and a shiny brown purse wrapped under her arm and sensible black loafers. “Oh dear oh dear,” she kept saying, wringing her hands, like the White Rabbit in Alice in Wonderland. “Patty, dear, I just don’t know what to tell you. I really don’t.”
“Have you called Dr. Richardson?” I asked her. That’s my dad’s cancer specialist, in Boston.
“Why it’s the weekend,” she said wide eyed. “He won’t be in.”
“He must have someone covering for him,” I said and then my mom interrupted with “here’s his cell number” and shoved it under the oncologist’s nose.
“Okay then well,” the woman said doubtfully, taking the slip of paper and stuffing it into her purse. “I’ll just give him a call when I get home.”
“It’s sort of an emergency,” I said snidely. “Can’t you call him here?” My mother shot me a warning look.
The oncologist left and the local kidney specialist showed up, a blonde woman with a heavy Romanian accent.
“This ees not good,” she said, eyeing my father. “I don’t know what ees going on.”
This was not reassuring.
“Why you stay here?” she asked. “You should go now to Boston.”
She was the first specialist we’d seen today to opine that. “My mother is worried about transferring him on the weekend,” I said. “She wants to wait until Monday.”
She shook her head. “You have a certain window of time,” she said. “Eef you wait too long, he will be too sick to go.”
“What would you do if it was your dad?” I asked.
“I would send him to Boston,” she said. “In an am-bul-ence.”
That settled it for me, but we had to convince my mom, who was still in a state of shock. Then we had to spend the next hour dealing with hand wringing, head scratching doctors who seemed at a loss as to how to arrange a hospital transfer when finally the hospitalist showed up at 4 pm, a sixty something New York City Jew who was a dead ringer for the actor Ron Rifkin. “He’s still here?” he asked incredulously and got on the phone to call Boston immediately. An hour later, my father was in an ambulance. I left the hospital, planning to stop quickly at my mom’s house, get a change of clothes, and drive to Boston. On the way out I saw a curious sight: a Doberman sitting in the hospital lobby with a young woman.
“Dogs are allowed in here?” I asked in shock.
“Oh yes,” said one of the nurses as she glided past me. “That’s one of the special things about the hospital. Dogs are allowed access to most areas, including patient rooms.”
I was never so happy to get out of there.
When I got home, my mother was inconsolable. Mark and I decided she was in no shape to go to Boston that night so I would drive ahead and the rest of my family would drive out in the morning. I was completely in fight or flight mode—I felt a huge surge of adrenaline as I raced around the house packing up clothes and searching for spare toothbrushes. But as soon as I got into my car I started to lose it. As I was going ninety miles an hour on the Mass turnpike all I could think of was the fact that my dad was probably going to die and that I’d never been able to say a proper good bye to him. It had all happened way too fast. I was angry, angry that this was happening, angry at my mom for insisting she didn’t need my help and I would be in the way if I drove out to Amherst, angry at myself for not insisting on coming out there earlier.
I hadn’t really been able to have a proper conversation with my dad since he’d lost his vision, and there was just so much I wanted to say to him, and now it might be too late.
When I got to the ICU at the hospital, the nurse took me right to my father, who was sleeping. His limbs were still trembling but there didn’t seem to be any more of those weird jerky like moves.
“Is he still out of it?” I asked her.
“Well,” she said carefully. “He knew his name, and his birthday, when I asked him.”
At that moment my father opened his eyes. I hadn’t seen him awake since before he lost his vision, and when I saw him I recoiled slightly in shock. They were the eyes of a blind man. “Where am I?” he asked, his voice sounding drugged and almost as if he were underwater. I realized the huge effort it was taking him to say those words.
“Daddy,” I said, running to him and burying my head in his shoulder. “You’re at the Brigham.”
“Patty?” he said.
“It’s Hallie,” I said.
“Who?” he mumbled.
“Your daughter,” I said. “Do you know who I am Daddy?”
He shook his head. “No,” he said regretfully, “I don’t.”
I started to cry again and huge gobs of snot dripped down my nose. The nurse brought me a tissue. “I’m so sorry,” she said sympathetically. She was a tiny blonde woman, pretty, in her mid 20s. “It must be so hard to see him like this.”
“Am I dead?” my father asked.
“No daddy,” I said again. “You’re at the Brigham.”
“Where?” he asked.
The back and forth went on for another hour. My father kept asking if he was dead and waving his hands in front of his face (it turns out when he does that he can actually see the outline of his hands, which is basically the only thing that’s left of his vision). He wanted to talk to my mother. We called her on my cell phone. Then he didn’t know who I was. Then he realized who I was. “Come here baby,” he said, holding out his hand. I grabbed onto him.
“Am I dead?” he asked.
Finally, at midnight the nurse sent me home. He needed his rest, and so did I. I went back to my hotel room and got into bed and stared at the walls, crying, for hours. At 3 am I called the ICU to check on my father. When Johanna was first born and in the NICU I used to do that all the time, the nurses are up, and it’s reassuring.
“He just had a CATscan,” the nurse said cautiously, obviously not used to people calling her in the middle of the night to check on their loved ones. “He’s quieted down and is sleeping. You should probably get some rest yourself.”
When I walked into the hospital the next morning, it was clear my father was on the mend. “Daddy, it’s Hallie. Do you know who I am?” “Of course I know who you are,” he said, frowning. “You’re my daughter.”
“I don’t understand. Am I dead?”
“No daddy, you’re not dead. You’re at the Brigham.”
“How did I get here?”
“You came last night in an ambulance. Do you remember?”
A pause. A frown. “No.” Then, “how did you get here?”
“I drove, Daddy, from Amherst.”
“Where are the babies?”
“With Jamie. In Connecticut.”
“You left all three babies alone with your husband?” Then a pause. “I must really be dead.”
A different nurse came in. She was also blonde, but older, and had a weary look in her eyes and her voice. “Let’s just take your temperature, hon,” she said loudly to my father, who began wrestling with her.
“I want to sit up,” he said belligerently.
“You can’t sit up, hon,” the nurse said, looking exasperated. “You’re too weak.”
“Where are the doctors?” my father demanded. “I want to speak to one.”
“The attending were just here on their morning rounds, hon,” she said. She looked at me and rolled her eyes. “He can’t remember anything.” Then, loudly, to my father, “you need to sit still, hon, so I can take your temperature.”
I stared at her. “He’s blind, not deaf,” I said finally. “And don’t call him hon. He’s Dr. Levine.”
The morning wore on and as each hour passed it became clear to me that my father was going to pull through. His kidneys had responded to the dialysis and he was starting to make urine again. Residents came by and started providing answers. The antibiotics he was on to treat his pneumonia had caused his kidneys, already damaged by the myeloma, to fail. The delirium was due to a combination of the kidney failure and the sedatives the local hospital had pumped into his system. They had reached his oncologist—in London for a conference—who was aware of the situation and would be in to see him first thing Monday.
I had answers, which were reassuring, but more importantly I knew we were in a good place, a safe place and that his team of doctors weren’t going to let him die.
It was strange to see my father in such a different place, such a vulnerable place. He wanted me close by him that whole morning, holding onto his hand. He kept asking if he was dead. Then, at some point, he switched to asking, “is this an alternate reality?”
“No daddy,” I said gently, assuming it was still the drugs talking. Then I really thought about it. My father assumes he’s dying and wakes up days later. He doesn’t know where he is and what happened to him. He can’t see anything and is surrounded by blackness. The voices he hears—other than mine—are not familiar. And the drugs have wiped out his short term memory, so he constantly tries to make sense of where he is and what happened—only to lose that information a few minutes later.
I sat there, squeezing my father’s hand and thinking about all of this, when he turned to me and said simply, “Hallie, I’m dying.”
I looked at him, surprised. “No you’re not, Daddy,” I said. “We thought you were, but you pulled through.”
He leaned back again his pillow and sighed. “Maybe,” he said, and the words were thick, as if he were mentally muddling through the fog that still engulfed his brain, “maybe it would be better if I was dead.”
I startled. It was so unlike my father to speak so bluntly in front of me and while part of me realized it was the drugs I also realized he needed some reassurance. And at that moment I knew it was the time, the time I’d been waiting for over the last few weeks, to say what I needed to say to him.
“No daddy,” I said and I started to cry. “You can’t die just yet.”
His brow furrowed and he stared off in front of him. “Why?” “Because,” I said, “I need my children to spend time with you and learn how wonderful you are. If you go now, they won’t remember.”
By now I was bawling, and out of the corner of my eye I could see the nurses discretely peeking in, wondering. But I had to finish what I had to say. I didn’t know if I’d get another chance.
“Daddy, I can’t raise my kids without you around to guide me,” I said. “I can’t do it. I have two kids with special needs, and some days I get so overwhelmed I can’t see straight. I don’t know what I’d do if you weren’t around to talk to. You get it, Daddy, you really get it.” I was choking on the words and great gobs of snot were coming out again, which I discretely wiped away with the sleeve of the Ralph Lauren sweater I’d borrowed from my mother. Thank god he couldn’t see that.
“Daddy,” I said, “if you die I don’t know what I’ll do without you.”
My father was silent for a while, just lying on the bed, looking perplexed. Finally, he turned and looked straight at me. It was as if he could see me, although I knew he couldn’t.
“Oh boy,” he said finally.
“Oh boy is right,” I said.
“Oh boy,” he said again.
By the time my mother and sister and my aunt and uncle arrived an hour later, my father had forgotten that conversation. As the hours went by, as the effects of the kidney failure on his brain wore off, his mental faculties returned and he seemed much more of his old self. He remembered that Geoffrey had had an appointment with a retinal specialist at Columbia. He remembered that I was taking Jo Jo later in the week to Yale to see an ENT there for a second opinion about removing her tonsils and adenoids. He remembered that I had an awards dinner and wanted to know how it went.
But he still couldn’t remember what happened to him, or how he got there.
Still, I’m glad I was there, to talk to him, and be there with him, before anyone else arrived.
And I’m glad I got to tell him how I really felt, even if he doesn’t remember.
Thank you, everyone, for all your love and support these last two weeks. Thank you Marni and Shira and Becky and Beth and all my other Moms Club friends for checking in on Jamie and the kids and bringing meals and otherwise acting like total pillars of support. Thank you Jamie for doing such an amazing job of taking care of the babies while I was gone.
And thank you God, for getting my father through this. I know I don’t often talk to you, and sometimes I’m skeptical that you even exist, but after the events of these last couple weeks I’m pretty sure you’re around.