I can’t help but wonder how the need for all these chemicals would evaporate if you’d just come back
And reach out
And touch me
Listen to me and all my foibles and failures
Hug me with your body so warm
The tenderness of everything scurried away the day you disappeared
In a final attempt to avoid a suicidal fate, I started escitalopram (Lexapro) at the start of the new year. I’d made a deal with myself: if you’re really going to pursue the final act (I had begun writing letters to people; I had a plan; I made a list of things one does to “get his affairs in order”), you’ve got to exhaust every line of therapy. The only thing I hadn’t tried was medication. Within about 10 days, everything turned around. I felt great. The greatest I’d felt in— forever? But recently things have turned against me. I’ve developed tinnitus. My insomnia has gotten exponentially worse. (Both of those issues, although rare, are possible side effects of taking an SSRI.) The tinnitus I can probably tolerate. But the insomnia, which was bad before I started the medication, is unbearable. I struggle to fall asleep. When I do sleep, I’m waking up every 90-120 minutes. And sometimes when I awake, I see flashbacks (a common symptom of PTSD) of Allison when she was sick. When these flashbacks strike, it’s like taking a shot of espresso: suddenly I’m wired and sleep isn’t happening.
So, with the OK by my doctor, I halved the escitalopram dose to 5mg. I was hopeful I’d still see some benefits. But today, five days after cutting the dose, all the bad feelings are returning. I’m thinking about suicide again. The irritability is climbing. The rumination is ramping up. And the insomnia hasn’t improved. And I’m so fucking discouraged. I caught a glimpse of feeling “normal” and “optimistic,” only to have it ripped away from me.
Ideally, I’d love to find a qualified professional to medicate me. But psychiatrists are of short supply, and I’ve all but given up trying to find one. I messaged my doctor about the aforementioned issues and hope to hear from her soon. Because once again, I’m struggling.
It’s called sundowning, and if you’re a registered nurse working on the inpatient side, you know the term well. Sundowning is a phenomenon in which elderly patients with a cognitive impairment begin acting out, usually during the evening hours. They become more confused. Agitated. Impulsive. As our day draws to an end, biochemical changes occur. Melatonin production ramps up, and dopamine levels decrease.
Lately, I’ve been experiencing my own sundowning. The past few days have been, dare I say, pleasant. A. routinely passes through my thoughts, but the thoughts rarely become disruptive— until the evening hours. As sunlight fades, the shadows grow long, enveloping my thoughts. And I can’t shake the fear that I’ll never recover from losing her. And I feel delusional for experiencing the relative optimism just hours earlier.
My therapist sends me a message, reminding me we haven’t talked in a while and expressing hope that I’m reaching out to others. She also reminds me of the dangers of being an introvert and self-isolation, especially as an introvert who is grieving.
I have been isolating myself. I chatted and exchanged messages with so many leading up to A.’s service, and then, literally overnight, they’ve all gone away, moving on with their lives while I’m still standing here, looking for direction.
Or maybe just looking for someone.
But who, exactly? How many within my small circle can even pretend to appreciate my loss?
Some people live through an experience (or series of experiences), and it breaks them. Sixty-two days later, I remain broken, unsure if whatever time I have left is worth the investment.
Maybe it’s just the sundowning talking.
Several weeks before you died, I admitted to myself the grave nature of your condition and asked you for your Passcode. And since you’ve been gone, I’ve visited that digital tomb numerous times. Today, on this gray Sunday, I’m scrolling through all the photos you’ve taken over the last decade. Selifes in San Diego with your sister. Selfies with me when we drove the Pacific Highway to Cow Hollow. Panoramas of unknown landscapes and screenshots of memes.
And on this gray Sunday, it’s as if I’m traveling back in time. We looked so young and happy, totally unaware of the forthcoming fracture that would break everything. My tears force me to pause (images are indecipherable when one is crying), so I stand, pace around this apartment, and try to become unrestrained. Open yourself to the pain. Ease the pressure from the shadows. But lately, the loss feels like forever, and I sometimes feel it so strongly in my chest I feel I may collapse and never collect my bones to stand again.
I’m lost, and for the first time since you died, I cried out to a god I’ve dismissed and asked it to take me. And before I can complete the command, I’m reminded of my mother, who cried the same words in the days after her second husband died (she would pass just 30 days after his death). I eventually compose myself, enter the Passcode and continue scrolling, knowing I must compose a slideshow of you for your funeral, just five days away. And as much as I desire to put you to rest, I’m terrified, fearful I will no longer have these funeral duties of which to cling. My source of devotion shall be no more. And what will then become of me? This apartment feels like a mausoleum washed in colors only the living can appreciate. And so, I drag my bare feet and feed the cat. And I can’t shake the feeling we’re both just waiting to die.
We’re talking to screens and recollecting lives lost and the subsequent damage. I tell my story, and as I begin to speak, I think it’s peculiar the emotions remain manageable. But then, I tell these strangers who you were and what you represented to me, and it all falls apart. And everyone is quiet, and I’m losing the story (a collection of events and emotions I’ve relayed so many times), and then I say something about spinning my wheels, upset — and slightly terrified — that the days aren’t getting easier and how hope isn’t a word that makes sense to me anymore.
After 90 minutes, we disconnect from our screens, and I’m proud of myself. And if you still existed in a form that could express emotions, you would be proud of me too. But soon, the sense of accomplishment fades, and I think about the strangers I met tonight and the stories they told. She was years away from her loss, but her face remained etched forlorn and frowning. “Things don’t necessarily get better. They get different.” And I tell myself, No, that won’t be you. You will wear this loss, but things will get better. I say this to myself again, but this time, the optimism isn’t there, and here come the tears.
How does one again find purpose when his life is awash in grief? I am lost at sea, and on the horizon, I can see my trajectory, and the longer this lostness churns, the more concerned I become about my mental wellbeing. Most of my life has been lived alongside some sort of mental malaise, and buried deep in the back of my mind is an idea, a notion that maybe, just maybe, this will be the thing that brings me down. So I must find purpose. For the previous six months, A. was my sole purpose. I dedicated nearly every waking moment to her. I was as devout as a human being can be. And now, not only have I lost that purpose, but I lost the woman with whom I spent the previous decade. I’ve lost nearly everything. And what I haven’t lost remains tattered and frayed, and the stitches are struggling to hold. Purpose, please. don’t elude me.
Broke down in the shower today, but the tears wouldn’t come.
I recognize she is gone forever, but still, I am occasionally swept away by disbelief. There is something beyond emptiness. There is something beyond sadness. And there is something beyond grief. I do not know its name, but when it strikes it is all-consuming. My chest hurts. Clenched in agony, my face aches. And while I’m in this cavern of pain, the edges cannot be seen. All the oceans on the earth cannot contain this sense of loss.
I’ve returned to work. Being back with my colleagues feels good, and I view many of them as extended family. The breaks are difficult, however. During those times, I would routinely message A. And at the end of my shift, coming home is different. No A. here to greet me. No dinner waiting. Things will never be as they were.
The shadow of grief has shifted. The permanence of A.’s absence can no longer be ignored or deferred. Her absence is everywhere. She was my everything. My life partner. My confidante. My love. My support system. My best friend. And now I look below from this strange vantage point. People are milling about, and many appear happy, laughing. Elsewhere, children jump with excitement; they seem to be playing a game. Life continues, and from up here, they are silent. My distance doesn’t allow me to eavesdrop, but their body language is evident: they are happy. And I cannot participate, even if I had the desire. I’d been building a castle of loneliness for decades, but A. prevented me from placing the final stone. She is now gone, and the stone set itself. This castle is complete.
And so, I have lost practically everything. My life ended the night she died. And at some point, I was reborn. I don’t look the same. My eating habits have changed. Even my flesh feels different. The life I now call my own is becoming less foreign, but I’m far from feeling comfortable here. I’m far from everything. I know where the sex workers walk, and I’ve thought about — these thoughts are far from fantasy — engaging, copulating, and thrusting myself out of this endless loop of pain and loneliness. I need something to break through this hell, even if it’s for a brief evening. But those are temporary measures, and refusing to engage grief will only prolong the suffering, so I stay here, in this new home, and all the screens are on, and they’re all flashing and sounds like sirens are ringing because the silence is now terrifying.
My therapist encourages me to confront these feelings through writing. Through music. And I haven’t missed a day of Peloton since the bike arrived. “See, mom, I’m trying,” I would tell her over the phone if she were still alive. She’d be drunk, tripping over her platitudes, but it’d be better than nothing. Her voice would feel familiar. Predictable. A connection, fraying, but symbiosis nonetheless. But it’s a fantasy. No one is here, and in the shadow of grief, I’m inconsolable.
The death and the grieving
Death is the tsunami you see from your perch on the coast
You take stock and try to prepare
Because you know escaping it is not possible
And the grieving is the aftermath
Everything awash in an unfathomable vastness
And the sadness
The sadness
The sadness
Preparation is something you do
A task to occupy a mind fraying on the edges
But it is foolish in its futility
Because nothing can prepare you for the aftermath
A change that wipes clean the pleasures of a previous existence
Now so foreign
And this,
So strange
I forgot to clip the Foley bag. I’ve been a registered nurse for ten years, and I forgot to clip the Foley bag. You were tossing and turning, and I was afraid, in your confused state, you would leave the bed and crash to the floor into a heap I could never recover. And so, I checked the Foley bag, afraid, again, that you could have removed it from your body. Since your family left, you’ve changed. Forgetful. Confused. Even giddy, at times. And so, I wanted to check your Foley. And that’s when I saw it. The urine, stinking and saturating the carpet (THIS FUCKING CARPET! WE WERE SUPPOSED TO REDO THE FLOORS THIS SPRING!). A slow dawn was creeping through the windows, and in the fading darkness, on my hands and knees, I dropped my head as if to, again, admit defeat and surrender to the cosmos. And so I gathered the vinegar, the cold water, towels and more towels. On my hands and knees, I’m cleaning, and you awaken. You stare at me. You see me, on my hands and knees, and stare, saying nothing and asking nothing. And you would die two nights later.
And so, I’m leaving this place today. I’m leaving so much behind, but I’m going. I have to. And while I could never stay in this place after what the disease did to you, there’s a little twinge. A sadness that breathes because I’m leaving behind tiny pieces of you. Genetic material. DNA. In the bathroom sink. The kitchen floor. The piss in the carpet. You’re everywhere in there, but you’re nowhere. But I have to leave. I must. And I still can’t believe I forgot to clip the Foley bag.
When A. died last week, it marked precisely 6 months since we learned something was wrong. And about two weeks later, the pathology returned, and our lives were completely upended. That day, in that hospital room, will forever live inside my mind. Psychologists call them flashbulb memories, and if I choose to perseverate on that day, it feels like yesterday. In the days, weeks, and months following, my life would frequently feel as if it were in suspended animation. A macabre existence. A slow nightmare. The feeling of being slowly buried by boulders. My therapist told me I began grieving that day. And while I’m still grieving, it isn’t a persistent fog like it used to be. There are plenty of moments when the clouds break, and I can breathe, easier. Bursts of happiness sometime come through. And other times, and without warning, the totality of the last six months crushes me like an anvil. And sometimes, I’ll freeze in pain as the naked realization of never seeing her face again descends over everything. And when this happens, I try to be mindful of the experience. The grief, the loss, the pain, the sadness— these are all valid emotions, and there’s no need to fear them. All our emotions exist on a spectrum, a plane where they all have equal footing. Some years ago, a meditation instructor told me that happiness is not life. Happiness is an emotion that ebbs and flows with our life experiences. And living in the West, we view the other side of happiness as something negative. Something that should be treated as an infection. And while I 100% support the use of medications in treating mental illness, I believe they are overused and seen by some as a magic pill. As if to say, I take this, and pharmacology does the rest. Unfortunately, that isn’t the case. So I embrace the sadness. I welcome the tears. And I try to experience that emotion fully and unrestrained.
So what does the road back look like? It’s impossible to say, but what I can do is be proactive in self-care to promote mental wellness and resiliency. During the last six months, all my self-care activities were significantly reduced or rubbed away entirely by the stress of it all. Hiking. Yoga. Meditation. Walking. Kettlebells. Intermittent fasting. All of it in total disarray. But that changed yesterday. I invested in a Peloton bike and intend to use it as my primary focus of personal fitness and self-care. I rode for 50 minutes and felt rejuvenated afterward, as if I threw off some of those boulders and reclaimed a piece — but just a fraction — of my life. Day by day, I hope to recover a little more of myself.
Six days after A. died, I moved out. She died there. It was supposed to be “our home.” Leaving the oppressive nature of that home was paramount. I’m so grateful for my uncle and his wife, who flew here to help me with packing. I’m thankful for having the financial resources to move so quickly. Despite the pain of losing A., I’ve found so much for which to be grateful. And while the new normal feels awkward and sometimes sad, I’m focused on the ride back. Piece by piece. Moment by moment.
Since A. died (she passed away just shy of midnight, May 25), I’ve found immense reward in expressing gratitude. When possible, I’ve tried to physically thank the many people who helped A. and me over these last months (six, to be exact). On Thursday, I visited the proton radiation center to thank the reception staff, who always greeted us so warmly during A.’s weekly radiation treatments. I also visited my workplace, where I’ve been absent since December, to thank my colleagues for their incredible support.
As a healthcare worker, I understand how important it is to receive gratitude from others. It rejuvenates you. It heals you. It makes it a little easier to go to work the following day. And it’s also what A. would want. She was the recipient of gratitude. And also gave it out freely. And, for me, moving forward from this tragedy is about bringing her with me. Keeping her legacy alive.
And so, we need more gratitude.
We live in a time in which murdered school children (the Uvalde tragedy also occurred on May 25) are seen as a necessary price to be paid for “freedom.”
We live in a time when women are on the verge of losing bodily autonomy.
The fascists are winning, but those of us who side with love must persevere. And for me, in this moment of my life, expressing gratitude is my best weapon. It’s my only weapon, actually. I’m too exhausted to fight with anything else. Because I’m heartbroken. I’m tired.
And I miss A.
It’s 2 in the morning when the gurney arrives. The transporter solemnly bows her head. “Condolences,” she says. Her partner wheels the death metal into the room where you lay.
“This is the last time I will ever see you.”
I watch the two women work, unzipping a bag and unfurling another, and they carefully slide the woman I met ten years ago into the white plastic bag. I’m torn. I can’t believe what I am seeing, but I’m comprehending everything, and yes, this is actually happening. The two women will take you away to a cold, sterile room with fluorescent bulbs so bright everything is white. And there, tools will be used to excise your brain. Ph. Ds will then study and examine tissue separated from tissue, and a thesis will be made. They’re going to write a thesis about your brain. And yes, this is actually happening. The bag is zipped—
“Goodbye, my love”—
and straps are snapped to secure you to the gurney. I scribble my signature on a release form and watch as you pass through the door of our home one final time.
And outside, an early morning spring rain begins to tumble from the sky. Sounds like soft static surround me. And the white van drives away.
I aged ten years today.
A.’s family left yesterday. Said their final goodbyes and left. And now, tonight, everything has changed. She’s hallucinating. Confused. Delirious. Forgetful. Even her voice has changed. In the span of 24 hours, she’s become unrecognizable. I saw the changes this morning as she ate her breakfast. And eventually, it all snowballed into this.
I’m terrified. And alone. Her father and sister are apparently returning. They want to be here for “the end.” And while I’ve always struggled in their company, I welcome their return. In the meantime, I’ve arranged for a home health aide for four hours tomorrow. I might even sign a lease for a new apartment. Once A. is gone, I will spend less than a week in this condo. My real estate agent will handle everything, and I’ll never step foot in this cursed building again.
And so, I kissed her goodnight tonight. And kissed her as if it may be her last goodnight. And I now long for the end. A ceasing of the suffering. A release. Goodbye.
Fentanyl patches for pain. Haloperidol for nausea. And an oxygen generator for comfort.
You’ve been dying since the diagnosis five months ago. But now, everything is accelerating, and you are becoming overcome. The life that remains offers you fleeting glimpses of lucidity. But the tide always retreats.
The tide always retreats.
And I’m left standing here, my flesh a ghostly blue, cast by a full moon overhead.
I wonder what will become of all the things you’ve left behind. Perhaps I will pack your belongings inside a shipping container and lead a line straight to the sea. I will deposit the vessel into the corner of the ocean, and I will follow,
diving after and sinking so far below, the machines of time are rendered obsolete.
Fentanyl patches for the pain and haloperidol for nausea. The oxygen generator hums, and I land a kiss soft as sand onto your cheek.
Goodnight, my Love.
Your journey is nearly over.
Your death bed was delivered today.
The delivery driver was wearing gauges,
and through his black mask he offered apologies after learning of your condition.
“She’s starting hospice today. Brain tumor.”
The delivery driver—
I never got his name—
moved quickly, assembling the bed with ease.
He handed me the remote control.
“This one brings up the head of the bed. This one…”
His words faded from my ears,
fading and away,
under the rising hum of the realization that others before you have passed away on this mattress,
an impermeable surface where no history is conveyed.
I thanked the delivery driver
(I never got his name),
And tipped him a hundred dollars and thanked him again.
Your death bed was delivered today,
and I’m standing before this loud machine,
staring blankly ahead into a white wall,
waiting for the linens to dry,
and the bed looks so small and lonely,
and the closer I get to losing you,
the more I feel so small and lonely.
We are still alive, but since the diagnosis, we now use the past tense to refer to the lives we now occupy. Every morning the sky is gray, and I hear her hacking cough crashing into walls. It reverberates everywhere. I remove the mask from my eyes, sit up, slouch forward, and the screen drip begins. Reddit. YouTube. Twitch. Twitter. Gmail. Yahoo Sports. Then rinse and repeat. Refresh. Rehash the same empty data that seems to serve no other purpose than feeding data and moving colors to a crippled brain. It's all just different colored distractions. It's something to push out the anxiety and grief and general unwellness. And since the diagnosis, I haven't worked. That's over four months. Since the diagnosis, I've been with her. Practically always. And slowly, day by day, I'm forgetting how to live. The routines are like slow nightmares. The anxiety has me twisting and turning, wishing to contort myself out of this scenario and into something whole and beautiful. Like it used to be. But there's no going back. It's a statistical anomaly, and there's no carcinogen to blame. No purposeful ingestion of something toxic. Just bad luck. Terrible luck. And so now she's planning her funeral and making arrangements. And I'm fearful of what it will look like on the other side of this. I'm wondering how I will shake the terror of living in a place void of you. A vacuum of time and space. Like a ghost sucking up all the air, it will hit me square in my chest. I'll barely stand steady, staggered, and gasping, and I...
But now-- right here-- we are still alive, but since the diagnosis, we occupy lives we never could have imagined.
Gray clouds like plumes of smoke tower overhead, nearly blotting the sun from the sky. And here we are in June, 17 days before the start of summer, and a hard snow begins to fall. In neighborhoods everywhere, people can be seen running. They’re all rushing to get home, eager to reunite with friends and family. Because everyone knows the end of the end is getting closer.
Everyone used to think the end would come as a fire from the sky, be it from nuclear weaponry or a meteor from space. The type of mass extinction event you see in the movies.
But that isn’t how it happens.
Day by day, the sun is slowly fading. Its death is occurring at a glacial pace,
so
slow
it
isn’t
discernible to the naked eye.
Remember when you thought you had time? Time to visit those distant islands? Time to visit Joshua Tree?
You and me.
Just me and you.
We’ll finally visit Paris. We’ve been putting it off for years.
We will climb the Eiffel Tower.
And there,
I will drop to a knee
and ask you to marry me
again.
And it will be the most beautiful thing we will ever see. So beautiful that decades later, we’ll find ourselves sharing tears of fondness. We’ll look at the photographs I took of the panorama of you and me.
And I’ll look at you,
and you will look at me
and smile.
We were so happy.
We were so young.
Remember when you thought you had the time to do all those things?
You don’t.
You never actually had the time.
Time is the reflection you see in the mirror,
gazing back at you,
but just for this moment.
A small moment of impermanence.
And in neighborhoods everywhere, a June snow falls, and people are rushing home to be with the ones they love.
Because the end of the end is coming. And it will be here sooner than you think.
A body weakened by disease, she struggles to carry her bones up stairs that now appear steep and daunting. She grips the railing for support, and with every step she takes, a vacuum pulls the air out of the room until it is then released, and then, another step. How long can she go on like this, you ask yourself. How long until she becomes a phantom of this place? You will carry her memory with you; you will wear it like an invisible mask of impossible grief. But until then, you will be a watchman of time and decay. The mirror reveals to you a face that is aging beyond the scope of time; it is slowly contorting into an incomplete portrait of loss and pain, and a brow that appears heavy and swollen, as if it is there where all your troubles have taken residency. They’ve been with you for nearly a decade and have thereby become enmeshed within you; they’ve entangled themselves like a malignancy, embedded far too deep to ever be excised. You turn out the lights, pull down the sheets, and crawl inside. Your weary head lay softly on down and cotton. You close your eyes and think, What if all of this is just a bad dream...
Pulmonary nodules. The chest x-ray revealed findings consistent with pulmonary nodules. The growths are small and scattered, and they weren’t present four months ago. The nodules are “concerning for metastatic disease.” She gets off the phone with her oncologist and asks you questions. Your eyes have never strayed from her inevitable destination from the day of her diagnosis. But she held hope, believing in the miracle of remission. But now-- now everything has shifted. The frontier has changed, and borders no longer mean anything. Everything is now vulnerable to attack, and she’s asking you questions you’re too afraid to answer. You don’t know what to say. And you, in your calmer moments, still find it baffling that this is her life, your life, two lives together, bonded by love and now, united by tragedy.
It’s been days since the phone call, and now she sleeps all the time. You’ve pondered why. Is it the depression, spreading like the malignancy? Or is it the progression of the disease? Perhaps it’s both, and all of this is just the nature of things, a slow progression towards the eventual and inescapable outcome. So you sit here, staring through a window and into a thicket of trees and shrubbery. Various shades of green sway in no discernible direction. The trees and the blossoms and the flowers and us-- it’s all just fodder for the cosmos.