by Sharon Tjaden-Glass
Friday, August 12th, 3:30 p.m.
“She’s out of isolation, so you don’t need to bother with a gown or gloves. Whatever it is, it’s not COVID,” the ICU nurse says. I glance at the whiteboard. Nurse: Megan.
Through the window, I see my mother reclined on the hospital bed, her eyes closed, her chest rapidly rising and falling. This labored breathing has been ongoing for days now, her heart rate increasing steadily over the days. 90. 100. 110. 125. 130.
It holds at 140 now.
140 is my heart rate when I’m jogging or doing kickboxing. And there, she lies, reclined on the hospital bed, her body racing as if accelerating toward some unknown destination in the distance. Does she know where she’s going? And when will she arrive?
What’s causing her high heart rate? I had asked the doctor.
It’s the body’s stress response.
We don’t know.
There would be nothing else to say until more tests were done. More and more tests.
I look at my mother through the door.
She is dying. Surely, they can see that.
I slide the door of the ICU room open and step inside and rest my eyes on my mother. And the reality of the situation washes over me again, a horrible reminder. Oh, right. It really is as bad as the last time that I was here, just hours ago.
But then, I realize. No.
It’s not as bad as last time.
It’s actually worse.
I want to tell every nurse and doctor and hospital worker, This isn’t what she looks like. She’s really not like this.
In a week, she has transformed from a robust 68-year-old woman into a woman who looks to be in her 80s. Frail.
I place my cup of coffee on the floor beside the chair next to her bed and sit beside her. The welts that have emerged on her face and arms are starting to crust over. The doctors guess that it’s a reaction to antibiotics to treat a UTI, but it’s just a guess.
I slide my hand under hers. It’s not as hot as yesterday, when her fever was 102, but it’s still so warm. Her fingers are swollen. From what? I don’t know. Why is she breathing like this? There are new masses in her lungs, ones that have grown rapidly at some time in the last month, but is that what’s causing her body to run like its out of control?
Her spinal tap is clear. There’s no infection. Her brain is fine. Her heart is fine. Carcinoid cancer is strange. We don’t know everything about it.
“Hi, Mom,” I said, trying to keep my voice steady. “It’s Sharon.”
I open a document on my phone. It’s a letter that I’ve written to her. I was going to read it at her funeral, but she deserves to hear it while she’s alive. My eyes skate over the first line that I’ve written to steel myself to read it, but I can’t see through the blurry curtain of my tears. They drop freely onto my dress.
That looks so nice on you! she had said, not two months ago. Stitch Fix? I’ve never heard of it!
I look around the room for a box of tissues and see nothing. There are never enough tissues in these rooms. I wipe my face with the back of my free hand as I hold my mother’s hand. Then, I pull a used paper towel from the dispenser in her last hospital room and dab at my face again.
I close the app with the letter to my mother and navigate to a song. Something that has comforted me in the past.
See me someday sleeping softly
Flowers draped across my knees
Hear the cries of friends and family
She’s not gone yet, but I miss her already.
I look down at my mother’s hand.
Just two weeks ago, she responded to my touch. One week ago, she could still acknowledge that I was in the room. Yesterday, with effort, she could say a few words–if they were important. I fed her a small piece of strawberry, and with great effort, she chewed it. Now, when she is aware, her communication has reduced to groans and a look from behind glassy eyes.
In this moment, her eyes are closed. I could almost convince myself that she was sleeping, if she weren’t breathing like she were running a race.
My head drops to her hand and I press it to my cheek, where my tears are now sliding over her knuckles and down her wrists. I turn my head and look up the side of her arm, upward at her as she is reclined in the bed and suddenly she seems as large as she was to me when I was a child. Authoritative. Grand. Only now, silent and suffering.
I want to wake her up, shake her out of this nightmare. I want to curl up in her arms. She was not a mother who would say something like, “Everything’s going to be okay, Sweetie.” Instead, she would say something simpler, like, “Hey, now. What’s wrong?”
Her hand is slick underneath my cheeks, my tears still spilling forth. There is Life there, inside of her, as strong as it has ever been. But not for long. Soon, her hand will turn cold and there will be no warming it up with peach tea or coffee with cream. I can still see the steam rising from her mug as she laughed about my ridiculous guesses for unscrambling words in a puzzle book.
The sadness settling over me is so heavy I cannot even hold myself up and soon, I’m collapsed over the rail of the hospital bed. I’m crawling up the side of the bed now, my face and neck pressed against her arm and hand, gazing up at her. I want her to snap out of this. For her breathing to slow. For her to look over at me and say, “I had the weirdest dream.”
But her face is so thin now. Her face has never been this pale, this thin, this drained of life.
I want to go back. To my beginning. When I was the Protected, and she, the Protector. When it was her tears of joy covering me at my birth, not my tears of sorrow covering her just before her death. How short the years were between those two turning points in our universe. I didn’t always take those years for granted. I cherished them more each time she told us the cancer was back. But how many years had the cancer slept–and I lost sight of my gratitude?
Moments with someone you love become so much more precious when you’re threatened with losing them forever. You find yourself making frequent trips to see them. Cherishing every word they say. Not throwing away their cards. Taking more pictures. More videos.
My mind drifts and I think of the woman who wept upon Jesus’s feet and then wiped away her tears with her hair, just before pouring expensive perfume over his feet.
Why was she crying? Jesus and his disciples believed that it was because she was “a sinful woman” and was plagued with regret.
But no one asked her. They just assumed that she was sad about her “sinful life.”
But now I wonder if she knew, in the way that I know now, that Death is at the doorstep. I wonder if she felt the same tight tug at her heart when she looked at Jesus, the tightness that I’m feeling now as I gaze at my mother in these final hours, as if she is being pulled into a thick fog while I am anchored here. Unable to follow, even at a distance.
Even though there was a time when we were so connected that the echoes of our heartbeats rippled throughout the same body. My hiccups were her hiccups, and hers were mine.
Wasn’t there a verse in Isaiah (Was it Isaiah?) that said, Death where is thy sting?
I know where it is. It’s here, in this room. I feel it needling me every time a monitor beeps, announcing some new threshold that my mother has fallen too far below or risen too far above.
The nurse, Megan, quietly enters the room and I don’t even try to hide my tears. What’s the point?
“Here,” she says softly, handing me a hospital washcloth. “This is better.”
I nod, unable to even thank her properly. I push the stiff, paper towels into my purse.
She doesn’t say anything.
There is nothing to say.
Life is filled with bitter music
Breeze that whistles like a song
Death gets swept down like an eagle
Snatch us with our shoes still on
Behind me, I can hear the soft conversations of nurses in the hallway. I can’t hear the content, but the tone tells me that whatever they’re talking about weighs infinitely less than what is happening in this room.
Do they know? Can they tell what’s happening? Is it obvious to them too?
When do we start using that word, dying? Is it too soon? It doesn’t seem too soon.
Instead, it seems too late for someone to be notifying me. Instead, it seems that I was meant to figure this out on my own. It seems that we are in the wrong place here. ICUs are meant for people to get better. Why is she here anyway? Shouldn’t we be in hospice? Why are we pumping high-flow oxygen into her nostrils and administering potassium?
Why did we do a biopsy? Will the results read as clearly as a pregnancy test? Dying or Not Dying? When are the results supposed to come back? After she’s dead? Why are we still testing?
The sobs overwhelm me and I find myself praying not only to God, but also my father. My grandmother. Any ancestors who will hear me.
Please. She needs someone to guide her. She needs help to find her way forward. I cannot stand to watch her suffer like this another day.
I love her too much to allow this to go on.
There is a doctor’s knock at the door. They all knock the same–an interrupting, quick signal that you are next in line. But I cannot even lift myself to acknowledge the sound. If this doctor’s time is money, they’ll need to pay the price for now. And I will come away from this moment knowing that I owe them nothing. I will not shield them from my pain or my grief. They should know the weight of what is happening here, how the gravity of this moment warps time, slows it down, so that every moment is lived painfully and with the greatest effort imaginable.
They should feel it, if even to a small degree, in the way that I’m feeling it now.
My mother is dying.
Whoever is about to sit with me and talk with me already knows that, too.
He’s very kind, this doctor in his late 30s. He uses phrases like, “How are you feeling about her condition?” And “Yes, I agree that it’s time to modify her goals.”
When I ask if we can help her pass without suffering, he says, “We absolutely can.”
Then, a new flood of tears arrives as phrases that should be uttered twenty years from now are spoken today.
We can move her to a private, quiet room. Make her comfortable. Give her morphine for pain. Give her anti-anxiety medication.
How long will it take, we ask as a family.
Could be 30 minutes. A few hours. Or days.
I’m hoping for a few hours. Time to say what we want to say to her. To pray. To read to her.
But the thought of wandering for days in this Space Between Worlds…
The thought is crushing.
But I know that I will bear it, no matter how long.
I will bear it for her.
The night nurse comes, Regina. I believe she is the Holy Spirit, the Great Comforter, incarnate. She can’t be older than 35, but she speaks as someone who has traveled this road of Death many times. She props her hands on her hips like she’s telling us the specials on tonight’s menu.
“I want to be clear about what we’re doing tonight. We’re going to do a terminal wean. We’ll do everything to make her comfortable and relieve her pain.”
It’s not insensitive the way that she says any of this. Instead, it instantly puts me at peace. What we are doing is not unusual or awful. We are only getting out of the way of Death. We are simply fulfilling my mother’s wishes, even though it means that she’s leaving us behind.
We read last minute messages from friends and family who want to say goodbye. We hold the phone up to her ear to allow family who can’t make it to talk to her. My mother says nothing. She cannot talk. All she can do now is groan, and only when absolutely necessary. She breathes heavily through her nose and mouth, which quickly dries out her lips. The tone in her jaw is gone. She cannot keep her mouth closed. Every time Warren carefully applies Chapstick to her lips, tears sting my eyes.
Can she still hear? I wonder. While half of me is glad that we are talking to my mother as if she can still hear us, the other half of me remains skeptical and wonders if this is all a show to make ourselves feel better.
Her brain is fine, the doctors had said.
As I sit on my mom’s left, my daughter, Felicity, walks in, tears slowly careening down her nine-year-old cheeks. She has been pinballing between entering the ICU room and remaining in the hallway.
Anything you want to do is fine, I assured her. Only do what you want to do.
She sits on my lap, facing away from me. She’s too tall for me to hold her like a baby anymore, so I do the next best thing and bear-hug her from behind.
Felicity gazes over at her grandmother and places her hand on top of hers.
My mother groans.
My chest tightens and I swallow.
“She can hear you, baby girl. She knows it’s you.”
Felicity leaves her hand there as her little body shakes in my lap. I know in this moment, my mother hates that she’s making Felicity sad. She hates that she can no longer mask the fact that she’s dying. She wouldn’t want to scare Felicity. She would despise the fact that the only sound she could make to comfort Felicity was a monotone groan. She would encourage Felicity to not let her condition make her sad. She might even tell Felicity what she had said so many times before, “I’m getting better and better every day, Felicity. Don’t worry about me.”
Without warning, Felicity jumps to her feet and moves to the other side of the bed.
“Can I hug her?” she asks.
“Yes. As tightly as you want.”
She leans across the bed and rests upon my mother and pushes out her shaky words.
“I love you, Grandma.”
Warren helps Regina remove my mother’s neck brace, which had been supporting her nearly healed neck after her most recent fall.
They remove the arm brace, which had been keeping her broken right arm in place.
Regina pulls away the tubing that forces high-flow oxygen from my mother’s nostrils.
A lump rises in my throat as a thought occurs to me.
We are removing all her armor now, letting it fall away, leaving her vulnerable. We all understand that she can’t be any more broken than she is now. Nor, are we are protecting her anymore. We’ve wandered off the road to recovery long ago. Now, we’re on a different path, each of us recognizing it at different times, as if we are each acquiring a new language at different speeds. I’ve been able to read the signposts for weeks, but I know that others have only been able to read them for days.
We are handing Mom over to a Thing that we have all feared, no matter what our faith teaches us. No matter how many cheery faces have told us confidently that there’s Heaven waiting for us on the other side, none of us have seen this destination, nor have we traveled there. Perhaps someday I will find comfort in the thought of Heaven. But not today. Because my mother’s path to get there is covered in thorns, ripping at her mercilessly even as she barrels blindly forward.
She will travel this last path alone, exhausting every weapon and tool that she used in this life. She will do this alone, just as she did when she gave birth four times. Just as she did when she fought through unbearable pain when she broke her back in 2007–and all the years of pain that followed. Just as she has fought this cancer for 24 years.
Like every other time before, she would do this last battle all by herself.
No man has ever come close to demonstrating the strength that my mother has.
Not even close.
She is the only person I’ve known who has chosen over and over again to walk into the shadows of Pain and Loss.
And still found the Light inside of it.
And then held that Light up for all to see.
Warrior isn’t the title that she has earned.
She is the Hero.
Maybe that’s why her body is still wielding its sword, slashing at shadows.
We can’t tell her to stop fighting.
But at least we can take away her pain while she fights.