I have recurring dreams. Nightmares, actually. I had the one that scares me the most last night. The one I don’t talk about. The one I haven’t had in almost a year. It sits in the back of my mind waiting to pounce, to remind me it’s still there. Not done with me yet. And so, I woke at 5am this morning, bolt upright in my bed with tears streaming down my face, vomiting into my cupped hands.
Yeah, it’s just that bad.
Several weeks into my father’s limbo coma-like state and shortly after I became his legal guardian and conservator, I made two appointments. The first was with a long-term care facility in our old neighborhood, which, I won’t lie, was a fucking surreal experience I don’t ever want to fucking discuss. The other was with the palliative care team at the hospital. I felt kind of strange about the latter for several reasons. First, it seemed like I was giving up on my Dad to talk to folks about end-of-life decisions, especially during a week where my brother and I had actually gotten him awake and alert and weening off of his ventilator. We were working on getting him talking. He was giving it his all — what all he had. It seemed like we were turning the corner. On an upswing. Why would I be talking to the team that helps people die? The other issue I had is that I felt kind of silly — like I was being dramatic and alarmist. It wasn’t real. It wasn’t happening. Talk of palliative care and hospice-in-situ was for people with cancer and other terminal illnesses. For people who were really sick and dying. Not my dad. He’d just had an accident. He wasn’t that sick. Was I in for a surprise.
The meeting took place in a small conference room on my Dad’s floor. It was clean and neat and cozy. I sat at a table with two other women — the doctor who was in charge of the palliative care unit, and the unit’s care coordinator. The doctor was a small, quiet, but no nonsense Filipina in her 40s. The coordinator was a smiling, attractive blonde woman in her 30s with larger presence. A social worker by trade, she seemed custom-built to simultaneously inform and comfort. Something about her size and her face made me feel safe. Like, for the first time in longer than I could recall, I was in the room with someone who could bar the door and protect me from all the monsters on the other side who were trying to get through it and claw me to pieces. Someone who was ready, willing, and able to stand between me and It and provide some breathing space. I remember thinking that I never wanted to leave that room.
Neither woman sugar-coated anything for me. Both expressed a great deal of relief that I had initiated the meeting. Said they had been hoping and waiting for me to call on them. I was surprised. Didn’t understand. Why would they care? Why would they even notice my father’s case in that giant, seven-floor facility? My father wasn’t that sick. They opened the meeting by quickly disabusing me of that notion.
“Your father is one of the sickest people we have in this hospital. You are not overreacting.”
I was stunned. At a complete loss for words. I sat there with my mouth hanging open, incredulous. I stared at the back my hands spread palms-down on the table, thinking how ridiculous they looked, small and weak and completely futile trying to grip something solid and find some purchase as the world tilted and spun around me. Wondered why I hadn’t brought anyone with me. Why was I sitting in a meeting about ending my father’s life alone? I let their words sink in through my hard shell, my tough skin, and all the multiple protective layers I’d built beneath. I was numb — had been for ages. It made no sense. No, it made perfect sense. I knew it. Deep down, I always knew it. I knew it the moment I saw my dad’s eyes, hazel green like my own, wide with terror behind the oxygen mask while I asked him if he wanted me to consent to the ventilator and medical coma on the night of his accident. I knew it was over then. The rest was just a formality. Motions and window dressing. I had a part to play, and I played it, even though I knew the story would eventually end with me walking out of the hospital lost and empty-handed in defeat one night. It’s why I made the appointment. If I’d been in denial, I wouldn’t have made the appointment. Knew Death was stalking us. Watching. Waiting. Patiently living in the corner of my father’s hospital room, filling that chair no one ever sat in. Knew she traveled with me on the planes and laid down with me at night and slept with her limbs wrapped around my tense form only to rise with me again every morning. She was my constant companion, but I never acknowledged her. Felt her standing on the other side of my father’s hospital bed staring a hole through my head, but I couldn’t bring myself to her eyes — eyes that were my own in a face identical to mine, because, really, what other form would she take? The bitch.
My goal was to find out what options were available to make my father comfortable and maintain his dignity should the tide turn and the inevitable come to pass. What decisions could I make when the crisis wasn’t at a fever pitch and my head was relatively clear so that I wouldn’t have to try to make them on an emergency basis when everyone was a mess and Dad was already in pain. I didn’t want to wait until it was too late. I wanted to make the tough calls while in the eye of the storm, so that all I had to do was lash myself to the mast once the world started ending and ignore the sirens’ call to take useless and selfish heroic measures long after we’d crossed the Rubicon. Once everything was in place, I had only to stick to my guns and see it through. Sounds simple, right? Ha.
Along with all the other paperwork I was offered to review and sign, the women gave me a small booklet called Gone From My Sight. It had a blue cover with a simple illustration of a ship that made me think of some Columbus Day coloring sheet of the Nina, the Pinta, and the Santa Maria I had done in the first or second grade. It seemed harmless and friendly enough and even though the cover clearly explained that the booklet was about dying, I wasn’t really prepared for what was inside this little manual on the feeding and watering and general care of the soon-to-be-dead. For the fact that once I had seen what was inside it, I couldn’t unsee it. That there was to be a me before I read it and a me after and that once I had the knowledge about how death worked that it would always be with me. That I would always know how to wield it — and expertise and a skill I didn’t want. For the news that death was a process. That, unlike we see on TV or in the movies, we are often dead long before we are dead. That, for people in circumstances like my father, dying takes days or even weeks. We move into a middle space where we are neither here nor there and straddle the two worlds for a piece of time even though the living fail to see it. I wanted to think that my dad waking from his coma and breathing and talking on his own was his will to live. It wasn’t. It was his death rally. For some of the dying, the rally lasts minutes or hours. For my father, it was a week. When I left him, I took the energy that fed the rally with me, and the balance between the two worlds finally tipped. He started to spend more and more time with Death, and less and less with me. She stayed in his room, in that chair whispering to him, keeping watch, inviting him to leave me and come with her. And he did.
The last time I heard my father’s voice was on the phone a few days before he died. I was driving to spend the evening with a friend and called the hospital. He had been too out of it to talk earlier in the day, and I thought I would give him another try. He was awake, but his breathing was labored, and he was difficult to understand. He also didn’t make much sense, as he wasn’t really in this world anymore. He spoke like someone slipping into sleep and talking to me from a dream even as he fought to stay awake. As my car climbed the overpass onto the north-bound Interstate, the post-rainstorm sunset sky an eerie purple and gold above me, his voice suddenly and clearly made sense again. Though breathy and labored, he was Dad again, just for a moment, as he said his last words to me:
“I sure wish you were here with me, Beej. I sure wish you were here…”
“I know, Daddy. I’m coming. Hang in there, and I’ll be in there in another week. I’m so sorry I had to leave, but I’m going to get back as soon as I can. I promise.”
“I sure wish you were here.”
“I know, Dad. I love you.”
And that was it. He slipped into unconsciousness while we were on the phone and the nurse took it from him and hung up. He never woke or spoke to anyone else again. Death had won. He wasn’t yet gone from my sight. But he was gone. I would have to catch a plane and take an ax to his moorings 48 hours later in order to let him fully go — to release us both from the purgatory grip that kept him out of his heaven and prevented me from passing through hell to where my waiting life wasn’t done with me yet on the horizon.
And so, the dream. The horrible, horrible dream shaken loose by recent unrelated, but traumatic events in my life. In it, I’m driving across the country from west to east. Driving from my home to the hospital, and I have my father with me, only he’s not really my father. He’s my father’s partly-dead, partly-dying body in his green hospital gown that gives him no warmth or modesty. He is cold. His skin is heavy and waxen and gray. His lifeless fish-like eyes are neither open nor closed, and his mouth gapes. He doesn’t so much breathe as air escapes him. He smells like the grave, and he’s heavy. His limbs are lifeless and inexplicably long — so much longer than my small body can wrangle with any grace. We are alone in the car — the old copper Plymouth Fury we had back in the 70s and nicknamed The Bad Penny. No other family with us. I am the only driver. The trip takes forever, and I have to keep stopping repeatedly at shitty motels where I drag him into the room myself, trying to keep him covered with the gown, trying not to bang and bruise his skin, trying to keep his body intact. Afraid that parts will stop falling off of my decaying, zombie father. The motels rooms are where it gets worse, because once I prop him up on his bed, he starts talking. Words somehow come out of his lifeless, sagging face, and they never stop. I never lay down on the other bed. Just sit helpless and trapped in the hard desk chair with my head in my hands and listen and listen and listen to the nonsense he spews while I try not to look at him. Words that don’t fit together. Other languages. Demands for things like water and food — meals he wants that he cannot eat and that I cannot give him. It’s horrifying and awful and every time I stop at a motel, I think about leaving him behind. Bolting from the room and gunning the engine and racing into the sunrise and leaving him abandoned to rot. That’s the part that’s truly horrific. That’s that part where I sit up in my bed and vomit into my hands. The part where I want to escape the gruesome specter of my dying/dead father that in no way resembles my Dad.
These things do not help the situation:
First, I still have my father’s ashes. My family needs to get it together to take him home to Chicago and scatter them. They spent a year with my mother, and now they’ve spent a year with me. They’re in a black box on the black shelves in my bedroom. At the foot of my bed. Where I sleep. Where I dream.
The other is the suitcase. Throughout my father’s time in the hospital, I kept a carry-on suitcase packed at all times. I was constantly on and off planes, so it never made sense to unpack it. At this point, it’s mostly empty, but not completely, and it’s still sitting in my bedroom next to the dresser. I have long-since retired and replaced it, as it was baggage, both literally and figuratively, that I no longer wanted to carry around with me. And yet, I still do. I think I will unpack the damn thing completely and throw it away today — along with a lot of other things.
Problem is, I know what’s inside that bag waiting for me. The little blue booklet with the ship on the cover. I know that opening the bag means seeing it again. I know it will break me. I know it will remind me that I’m already broken. That no matter how I have glued myself back together in the past two years, the cracks are there. I’m an irreparably insane person who dreams of taking her dead father’s corpse on a cross-country road trip and then throws up her dinner in bed. I’m not right. I’m never going to be. I’ll spend the day haunted with my chest hurting and my heart pounding in my throat, and tonight I’ll spend the evening alone with a bottle of red getting blind drunk to make it better. And that’s just how it is.
It’s not the dying that bothers me. Death is a friend. It’s the middle ground. It’s the process. The everything that came before it. The run-up. The knowledge that it was all rigged from the jump and that I was forced to witness the horror anyway. That I still have to witness it from time to time behind my eyelids at night. The knowledge that that’s probably not going to stop. Ever.
And so, I will do what I can to take solace from the poem in that little blue book sitting in the suitcase in my bedroom. Waiting for me. Haunting me like an old friend. The vision of the two worlds that I choose to believe, that best illustrates my real, waking relationship with Death:
“I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then someone at my side says: “There, she is gone!”
Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear the load of living freight to her destined port.
Her diminished size is in me, not in her. And just at the moment when someone at my side says: “There, she is gone!” There are other eyes watching her coming, and other voices ready to take up the glad shout: “Here she comes!”
And that is dying.”