sundowning

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.

Funeral duties

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.

Tears to screens

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.

observations

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.

Castle

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 ride back

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.

Gratitude

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.

The last time I saw you

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.


practically always

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.

Nudged from a pier, you are now on your own

Today was A.’s final day of proton radiation. She will undergo an MRI in a couple of weeks to assess the tumor’s status and will likely begin another regimen of chemotherapy following that. Last week she completed the first cycle of chemo, which consisted of six weeks of vincristine. Her last dose of vincristine was canceled due to side effects, however. Her oncologist was pleased that she got five out of six doses, so that’s a win for her.

Today is bittersweet. A. can receive no further radiation, and her oncologist characterized that line of treatment as the best weapon against this aggressive tumor. She now has expended her last bullet and must now rely on chemotherapy, which can certainly slow the tumor’s growth, but that therapy is less focused and carries with it myriad side effects that can limit its use. How will the tumor behave now that the precision protons are gone? How many “good days” do we have left?

As I write this A. and I are joyriding a ferry to Bremerton. I’m typing and she’s knitting. Once we arrive, we’ll reboard the craft and head back to Seattle. I can remember our first ferry ride after we arrived here in 2014. It was a special trip for both of us; neither of us had ever been on a ferry, and riding one was one of our first Seattle experiences. We rode to Bainbridge Island. Shopped a little. Grabbed a bite to eat. It was a nice day. Today’s voyage is a celebration of sorts. A welcomed break from the norm now that her five-days-a-week treatment is finished.

I’ve spent the last ten years of my life with A. When you spend that amount of time with someone, they color nearly every facet of your life in ways you could never imagine. For the rest of my days ferries -- just the idea of a ferry -- will be colored by my days with A. I will remember this trip. I’ll remember our first ride. At some point, once I return back to work, a patient is sure to mention something about a ferry, and A. will then be there, inside my mind, a memory from a different life.