I read you one of my stories because you asked, even though I told you I only write depressing ones. Then you asked me to write about you. Did you ask because your life was depressing? I wondered . . . and it kept me from writing.
Yet now, after my visit today, I feel the need to express your deep pain and sorrow but also my discovery of your strength—what it takes for you to get through each day; to live a life which would appear meaningless to so many . . . even to you.
You ponder out loud if the rest of your days you will lie in bed listening to YouTube videos, catching only glimpses of images which blur and swim before your eyes. You have regained much of your speech, and yet you are so self-conscious apologizing each time you stumble and search for words.
I mostly listen, even though you ask me to tell you things, things about me, things that happen outside your hospital room. You tell me about the places you have been, the jobs you had, the family and friends you lost, the food you loved, the brands of whiskey you drank, the independent soul you were, the big shot, the Uber driver, the house-owner, the subletter in a one room basement apartment, and now the renter of a storage unit paying your monthly bill while the key has gone missing.
You lost so much. Then, a stroke took the last thing you had left—you.
You never laughed in the beginning, but enough time passed for you to feel safe to show emotion. Today you cried—you sobbed; tears streaming down your face. You were triggered by a woman screaming in the hallway outside your room. You broke down, unable to compose yourself until you had told me the story, an agonizing tale of love and loss to which I had no response; raw memories buried in a grave never unearthed until that woman’s screams broke the surface and your emotions erupted.
You spoke of your sister—taken from you by cancer—who was more precious than anything else. You watched her die for over a year. You tried to rescue her; she begged you, screamed at you, “Save me!”
I do not believe it was just losing your sister, but losing yourself—your independence, your dignity, your belongings—which were the real trigger. That scream—by a woman you did not know—tore you open, ripped through your soul, stripped the covers off and all your pain was laid bare. You talked to yourself, “Be strong.” You engaged in a breathing exercise—breathing in through your nose and out through your mouth, in and out, in and out . . . You wiped your eyes with a napkin I found on the window sill. The memories kept coming, how her extremities had turned black, how long and much she suffered, and yet, “She would laugh,” you said, “like you.”
For a year now they’ve kept you from dying. Many times you wished you were dead, having to bury your ability to live: confined to a bed, barely able to feed yourself, navigating your tablet screen by touch, your keyboard no longer operable—the keys glued together with a spilled dried-up protein drink.
Is this what you want me to write? The raw and honest truth? Of hopelessness and helplessness? The decimation of your life one step at a time? From riches to rags? On life and death? Or your long journey from life to death?
Yours has been one of the longer roads to travel with multiple detours and comorbidities along the way. You are mostly paralyzed, not even sixty years old with no one to support you but a friend who calls you on your cell phone three times per day. You are refusing to contact the few family members you care about, unwilling to disrupt their life—to be a burden.
Today was rough. You change the subject, talk about the animals I taped on the walls of your room and you tell me about the cats and dogs you used to have—their unconditional love for you.
Another day. Another diagnosis and a new treatment option is offered. You refuse. You request medical assistance in dying. You tell me there is no more hope and start comfort care, withdrawing from all medical interventions. The passage towards death narrows.
It is as if the reality of the end is now so near that at last you allow your sister’s children to be notified of your imminent death. They call on the bedside phone. I answer and hand you the receiver to connect you to a life that only exists in stories you have told me. You listen a long time, respond with a few words in a language I don’t understand, and hand the phone back to me. They tell me you have agreed to live until they arrive. A whirlwind of action begins. Nurses and doctors are notified. IV pumps and medications are started to prolong your life. The assessments for assisted death are paused.
You are hanging by a thread, living on hope alone, the toxins poisoning your body, infiltrating your brain, and causing your one remaining functioning arm to lose capacity.
The waiting game begins, not knowing if the fight is being lost or won. You are aware of what is going on and tell me again to write your story. When I ask what to write, you tell me, “Write this, tell them I love them; I love them so much.”
The next day you announce, “Tomorrow, tomorrow they are coming.” Your eyes keep rolling back and closing, you talk haltingly and every sentence is interrupted with “I can’t think of the word . . .” Finally you sigh and say, “My brain is dying . . . I can’t walk, I can’t talk, I can’t eat, I have become a useless creature.”
I have to leave and, as usual, you say, “Thank you, thank you for all you do . . .” But this time you hold my eyes and pause. I somehow know there is more. I sense your hesitation. A deathbed confession follows. It is safe to admit in full abandon what you feel because there may only be this moment. You know I will not be back until Monday, and you don’t know if you will still be here.
“I love you; I love you.”
I search for words, analyze their appropriateness, question if a lie would desecrate this sacred moment and blurt out, “I love you too, I really do,” I touch your arm and run my hand over your forehead. You close your eyes. Deathbed empathy?
Or is there more to it?
Is it a true reflection of a relationship created, based on intentional short-term bonding, a deep need, loneliness, and desperation to hang on to something meaningful evoked by a humane—not just human—interaction, mutually engaged in over a period of time, providing reassurance of commitment and true compassion. A love that has no boundaries because of its restrictions—confined within the bondage of professionality, disability, lack of privacy. Feelings which can be expressed—when death is imminent and yet pending—moments before we part, maybe for the last time. Maybe it was only maybe for me, and you knew more.
Many times when I left, it would have felt so natural to kiss your forehead, like I kissed my children when I tucked them in, but of course I never did.
Was it that I touched your humanness? One human to another—companions, a love beyond infatuation or attraction.
I search my mind for the meaning of love and eventually resort to my computer to ease my confused mind.
Love:
Eros—passionate love. I remember we talked about how circumstances brought us together but if we would have met in any other capacity I would have never given you another chance.
Pragma—enduring love. We only knew each other for six months
Ludus—playful love. Did we flirt? We might have, in moments when we laughed together or looked deep into each other’s eyes when words meant nothing.
Agape—universal love. We unconditionally appreciated each other after a time.
Philia—deep friendship. We did not know enough about each other; from your stories I had the suspicion at one time you were a high roller, a player.
Philautia—self-love. Neither one of us was good at this.
Mania—obsessive love. There was not enough time to obsess about anything but death and survival, depending on the day.
Storge—familial love. Compassionate, protective, a deep love rooted in memory, reinforced by blood, early memories and familiarity. We weren’t family, and yet . . . because of their absence I was all you had for a time. You shared memories and became familiar.
If I would have dared ask, which love would you have chosen?
We never went there. I remember you tried once and I diverted the subject. I returned to it the next time I saw you and you were surprised. Again I changed the topic and we did not touch on it anymore, knowing some things were better left unspoken.
You left . . . and I did not have to weigh my actions and words any longer. But the lingering deliberations of our connection weigh on my mind; self-discovery . . . or was it self-disclosure?