Of Clouds and Silver Linings

The skies in my world have been pretty overcast as of late. Now I know this is often used as a metaphor for sadness. Granted, there’s been plenty of that to go around. But for me, sadness comes and goes like a storm. Much more pervasive and persistent are the clouds of loneliness and yearning.

Loneliness. I’ve plumbed the depths of this emotion more than I would have ever cared to. I’d consider myself an extrovert. I grew up a twin, never more than a few feet from my freckle-faced “brubber”. Then it was off to college, where I always had a roommate. Lots of friends and lots of good times. Seemed like there was no end to the opportunities for an extrovert like me. I suppose I did a stint on my own after college, before I figured out that I didn’t want the moments that Alicia and I were spending together to stop. Then we were newlyweds trying to figure out what marriage was, and what it certainly wasn’t. Lots of bending and stretching, tearing and mending until you finally fit each other like a pair of those fancy shmancy Isotoner gloves. And while I had time to get broken in to this process of becoming a husband and companion to someone full-time, the same was not true of my exit from the blessed institution of marriage. Bam! You’re single now bro, get the hell used to it. The only way I can describe it is to picture yourself getting slammed into a concrete box for solitary confinement when you’ve walked freely in the sunshine for the last 16 years. That incredible human being, the one reliable safe place in whose presence you could be anything, is now gone. And yet the desire for that connection remains. So I write her, a lot. Only I get no responses. You start to suspect that the warden on this unit is stashing her replies in his top drawer, that mean bastard.

And now for the yearning. My God, the yearning. What do I even say? When you’ve put in the hard work and are tight with your partner, you get the keys to a cabinet full of perks. I’m talking the kisses goodbye and the kisses hello, the check-ins throughout the day, the pet names, the ribbing, the debates and the challenges, the lovemaking, the blissed out spooning after lovemaking, the just simply sitting around and doing nothing but you’re cool with it because you’re with your best friend. And again, you’re not given time to adapt to this new reality when she’s gone. No slow weaning from the intimacy you’ve shared on a daily basis. That cabinet was slammed shut on your fingers. All you’re left with is the marrow-deep throbbing and, of course, the yearning that keeps fucking with your mind. On my worst days, I just want to take to the streets like a beggar, wandering and pleading for alms of affection, for anything. It sure as hell feels vulnerable and pathetic, but it is what it is. About the only thing that dulls the ache is to strap on my Pearl Izumis and head out the door. Not to beg, but to run my ass off until I’m too spent to dwell on anything else but the taking of that next step and the in-out-in-out of my breath.

And now for those bittersweet silver linings – memories. In my case, these initial encounters were difficult to handle. The pain was so fresh that any recollection plunged me into despair. But slowly, quietly, the sweetness of them all started to bubble up from somewhere deep below. I suspect they were always there, they just never had need to arise. And it’s not just cognitive memories I’m referring to. No, these are memories of touch, of scent, of hearing, of her very presence. I knew Alicia was wired into my senses early on in our relationship. From the very beginning, she always loved it when I “played with her hair”, as she called it. Shortly before I moved abroad, I was sharing a bed with that very same freckle-faced twin only to wake to myself, yes, playing with his hair. (So sorry brubber Jeffy!) Fast forward a couple of months, and my flatmate in Spain is having a sit down with me, asking me if I’m gay. What? Turns out I’m playing with Gerardo’s hair too, and giving him tender little kisses on the head to boot. (Lo siento muchísimo Gerardo!) But back to my point. I really don’t know where these sensory experiences come from, and I really don’t care. Though they will never be a substitute for the real thing, they are still so precious and healing.

I know I’ve referenced the movie Castaway in a previous blog, and I’ve got to do it again. Hmm, there must be something I really like about that flick. All too often I don’t have the answer when I’m despairing from loneliness, from yearning, from sadness, from anger, or from whatever else that comes with this process. But I find wisdom in these words:

“And now I know what I have to do, gotta keep breathing. Because tomorrow the sun will rise. Who knows what the tide could bring?” (emphasis added)

Here’s to breathing and keeping a weather eye on the tide.

 

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When Reality Pries Your Fingers

We’ve all heard the saying “You have to let them go” in relation to losing a loved one, right? Funny thing is, I never had to think about it much until tragedy touched our lives. When I do pause to think about it, I struggle to wrap my head around what it is, how to do it, or even whether it’s a good idea in the first place. Nevertheless, I know that my “letting go” started well before the mournful day of March 14, 2016.

Letting Go – Take One: Late November. We’re sitting across from her surgeon and getting the results of her most recent biopsy. He’s telling us how sorry he is, how we threw every single thing in the toolkit at the cancer, how the cancer just took it in stride. Not even removing her entire tongue and half of her jaw would save her, probably only make what time she has left all the worse. As we drive home, she asks to go to the movies, so we do, hands held tightly. Finally, later that night, she corners me in the bathroom and asks, “Am I going to die?” We collapse into each other’s arms and weep uncontrollably, the unspoken truth strangling any answer I can muster.

Take Two: Middle of December. Now we’re driving all day and into the night to get to the Mayo Clinic in Arizona. She’s delirious in the back seat from the pain and fatigue. At the appointment, they tell us nothing we don’t already know – no clinical trials, only a push for the very surgery she’s already courageously once denied. We run out of pain meds with one day left before our return to Idaho. It’s decided, she’s flying back with her aunt accompanying her. I’m going to drive like mad to Idaho, pick up the meds at the hospital, and meet her at the airport. As I leave her in the care of her Aunt Donna the next morning, she embraces me long and sweetly, whispering the most profound “thank you” into my ear. I can’t leave her, oh God I can’t leave her, I just can’t let go.

Take Three: Late December. We’re two weeks into a second-line chemo now, mainly just to control the symptoms. Just a week earlier, she was in such a deep sleep that it took me five minutes to wake her. I rush her to the hospital – she’s okay, just really low oxygen. She tells me later, “Josh, it’s okay, I haven’t rested in so long. It was kind of nice, sleeping with no pain for once. Please just let me sleep next time, try not to worry.” So I do, only one week later on January 2nd. She’s sleeping all day. I do her tube feeding, she doesn’t wake. I administer her meds, she doesn’t wake. It isn’t until eight o’clock when I try to wake her that I realize this is different. She’s limp, her breathing is so shallow, her eyes are open but not seeing, limbs are cold. She’s dying Josh. I call the paramedics. At the ER, the gentle young doctor pulls me to the side, light reflecting in his blonde stubble. Out of earshot of the boys, he asks me what I want to do. Stick a rigid tube down her trachea, go aggressive? No, she’s endured unimaginable pain in that very spot, I’ll not subject her to one more minute of unnecessary agony. Comfort measures only please. He advises me in so many words of how bleak the situation is – best to prepare myself and my boys. So we do. We do our letting go right there amid the din of monitors and the nurses’ bustle, my boys bravely and haltingly trying to choke something out to their vulnerable mom that they’ve never imagined having to say.

Final Take: She survives, she rallies, damn she’s strong. We commence hospice. I know it’s not a question of if, but when. So much letting go I can’t see straight. Nine weeks she fights for life, never really letting go herself. No moments of “I’m ready to go now.” She becomes delirious again. I’m draped over her and weeping a few days before she passes. She wakes, and with clarity pushes me up so she can look me in the eye and asks childlike, “Why are you crying?” Me: “I just love you so much honey.” Inside, I know it’s because her time is near. I’m having to square yet again with the “noble” art of letting go. But I can’t tell her that now, it would be too cruel in her state of mind. She replies, but the clarity of her speech has slipped again, I can’t make it out. I can tell from the cadence, the intonation, that it’s lovely and encouraging. She ends it by saying, “It’s true.” I nod my head in agreement. I don’t need to know the details to feel the veracity of her final words to me.

Alicia slipped into unconsciousness shortly thereafter. She never fully woke again. Yes, I did have to let go when she passed, when I helped the kind man that came to take her body away, when my boys and I made the trek to safely carry her ashes home, and every day since. Really, I think “letting go” is a misnomer. I think so much of it is just grieving, feeling the oppressive weight of reality sprawl over you and squeeze the air out of your lungs till you’re gasping and crying, “Uncle! Fucking uncle already you bitch!”

Letting go of dreams we dreamt together, yes, that I can vouch for. I’ve been forced to let go of the notion of a life spent together with her. No seeing our boys grow up, fall in love, and marveling together at the men they’ve become. No grandchildren army crawling up to her and biting on her toes the way she used to let Ben do. All of that, sadly – yes. As for the rest of it, I’m not letting go of anything. Not my memories, nor her strength, nor her legacy to me and our boys, nor her treasures, not even her locket of hair, nothing. That tub-o-lard I call reality can go fuck himself. I’m letting go of letting go.

Relativity

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“I have lived thirty years in these thirty days. I am thirty years sadder. I feel like I am thirty years wiser.” –Sheryl Sandberg, COO of Facebook, posting one month after her husband’s death

I wrestled in my younger days. And while I thought wrestling three, one-minute periods was tough in middle school, I had no idea what was waiting for me once I got to high school. I was a wiry, tenacious, hard-nosed 112 pound kid. You take one of me, and put me up against another kid just as dogged, and let us grapple each other for three, two-minute periods, and what have you got? Two purple-faced kids trying not to lose their cookies in front of the wrestlerettes. Never before had I known that six minutes of one’s life could be so agonizing, so prolonged. The harder the encounter, the more the hourglass defied gravity. And so it has been in the weeks since Alicia died. That’s why Sheryl Sandberg has got some serious street cred in my book, she knows what’s what.

This time distortion is only made all the more jacked up because my internal clock seems to have been reset to the time of her passing. Everything since gets measured against that painful point of reference. Every passing day, each week, my mind constricts around the notion that I’m somehow further from her. She’s the Wilson to my castaway Tom Hanks. Oh how I desperately want to jump off this raft and claw my way back to that day, to the hour of our forced separation. Only it doesn’t work that way, and I find myself being pulled slowly, agonizingly, further away with each passing moment. All that’s left is to collapse on this piece of shit, rudderless raft and wail, knowing I’m powerless to do a goddamn thing about the fact that I’ve lost her. In my weeping I’ve mumbled these thoughts to myself countless times, but I now have need of screaming them out to her as time carries me away,

“I’M SORRY ALICIA, I’M SORRY YOU GOT CANCER…I’M SORRY YOU SUFFERED THROUGH SO MUCH…I’M SORRY YOU COULDN’T EAT ANY LONGER AND YET YOUR HUSBAND IS AN SLP AND EVEN HE COULDN’T HELP YOU SWALLOW ANYMORE…I’M SORRY IT HURT YOUR TONGUE TO TALK AND YOUR WORDS WERE HARD TO UNDERSTAND…I’M SO SORRY I WASN’T THE ONE STRAPPED INTO THE MASK EVERY DAY AS THEY BURNED MY TONGUE AND MY FACE AND MY NECK WITH RADIATION…I’M SORRY YOU STOPPED FEELING LIKE A MOM TO OUR BOYS…I’M SORRY I GOT FRUSTRATED WHEN I WAS DOING EVERYTHING AND YOU WERE COMING HOME EVERY NIGHT AFTER WORK AND COLLAPSING ON THE COUCH AND WE DIDN’T KNOW YOU HAD CANCER YET AND I SAID I FELT LIKE A SINGLE PARENT, BECAUSE I’M A SINGLE PARENT NOW AND I GET IT, IT’S SO MUCH HARDER. I’M SO, SO SORRY ALICIA, SORRY FOR EVERYTHING, PLEASE CAN YOU STILL HEAR ME I’M SORRY…

 

Grief is…

You’re walking barefoot along the beach, enjoying a nice stroll just at the waterline, lulled into a mild trance by the ebbing and flowing of the waves. Every now and then, you get hit with one of those waves that creeps further up the beach than you expected, foaming water rushing past your bare ankles. All of a sudden, you get knocked on your ass by an unusually strong one. Forget getting up, there’s no gaining a foothold. You try to fight it, but you start to sputter and drown each time you go against it. You get exhausted. There’s no getting back to the beach on your own, and though you look, you don’t see David Hasselhoff jumping head first off a moving speedboat (in slow motion) to pull you out. So what do you do? You eventually just give in, let this ride take you wherever it feels like. You’re at the mercy of the undertow.

Back in the real world, this looks like a whole lot of emotion. Your strolls along the beach are merely everyday activities you used to do without batting an eye. Time to go to an award ceremony for Caleb, sweet. You arrive, take your seat, and realize you were in this spot last year, sitting next to her, discussing where you’re taking the boys for dinner to celebrate. Cancer? What cancer? One ticket for the undertow. You’re sitting in a work meeting, one at which she was a regular participant when you worked together. Four families are on the team’s agenda for whom she was the social worker. Are you kidding me? Oh look, you’re getting pulled out. Hey, you have a great idea. Even though she’s not here for your 16th anniversary, you want to take time to select the perfect card for her, to still honor the date. Deep down you hope her light is piercing the darkness somewhere in the cosmos, that your gesture will reach her. You take a field trip to the Hallmark store. Seriously, how did you not see that one coming? Quickly now, pay and get back to the car before this undertow experience starts freaking out the nice Hallmark ladies. Where in the hell is Hasselhoff, that worthless meathead?

So you do this over and over. You eventually figure out that the undertow is nice enough to deposit you back on the beach each time. And, you learn to get up each time, wipe some of the sand off, and keep making your way down the beach. Real world translation: you wipe the snot out of your mustache and dry your eyes. Maybe one of your boys comes up to you, “You okay, dad?” “Yeah, I just really miss mom right now.” “Yeah, me too.” Time to take a stroll.

Coming Clean

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As many already know, my boys and I (and many others) have experienced a tragic loss this year with the death of Alicia. As I’ve tried to stumble my way through the grieving process, I have been stunned at how my mental faculties have been affected. Normally a voracious reader, I can’t seem to even get through the headlines on a newspaper. On the other hand, I have been writing more than at any other time in my life, strangely. It seems to be the most direct route to connecting with my grief. My hope is to find healing through writing, and to offer an honest reflection of my own response to the reality I’ve been faced with.

Now to the “Coming Clean” title. I’m an atheist. There, I’ve said it. I know this is a curve ball if you are one of my beloved Christian family members or friends. Knowing full well the negative connotations this term carries in religious circles, let me explain. The simplest definition is one who lacks a belief in a god, which pretty well sums me up. I’d love to choose “agnostic”, as it implies I’m seeking or just in a state of uncertainty, but that’s a bit disingenuous, more to soften the disappointment than an honest account. Now, to dispel any assumptions that may have been made:

“You’ve faced a terrible trial, and have turned your back on God.” No, I did not stop believing in god as a result of Alicia’s death from cancer. My deconversion (yes, it’s a legit term) occurred many months before cancer ever darkened our doorstep. True to our marriage commitment of keeping no secrets, she was the first to know.

“Why wait until now to say something?” My decision at first was a very private matter, and I only told a few others besides Alicia. My intention was to broaden that circle in time. Then, cancer hit. My utmost priority once we started that journey was to love and support Alicia no matter the cost. Airing that decision would have been selfish and awkward at a time when we could ill afford it. But know this, I agonized over my change in heart daily, knowing what it was like for Alicia to be “unequally yoked”. I would have gladly put Humpty together again if it was such a simple matter.

“But, you thanked us for our prayers, you were even there and said nothing!?” What else was I supposed to do? My wife and best friend was dying, and many of her dear family members and friends were coming forth in support of her. Should I have raised my hand and said, “Uh, sorry folks, I don’t buy this anymore, please excuse me.” I did my best under the circumstances. And, to be honest, I was and am thankful for the prayers. Although I don’t believe in a god anymore, those prayers, for me, were a representation of the many hopes that so many held, and of their sincere love for her and for my family. So yes, I swallowed my objections, kept my mouth shut, and remained by her side, exactly where I belonged. What’s more, when she was afraid or would lose hope, she would often ask me to pray for her (even knowing where I stood). I would pour out my heart, giving voice to my own hopes and desires for her. She was worth far more than my own personal hangups.

“You’ve removed God from the throne of your heart, and want to be your own god, doing as you wish.” While no one has said this to me, I’ve heard it said of others who have gone before me. Sorry to disappoint, but my deconversion was pretty uneventful. No descent into drunken debauchery, no hedonism, no pornography addictions, no gambling, etc. I’m still Josh. My values really didn’t change, only my beliefs. I was the same husband to Alicia after my decision, as I was before. My actions toward her were motivated by a deeply felt love and devotion. They were never motivated by the prospect that a god would punish me if I somehow didn’t live up to my wedding vows.

“What does this have to do with your grieving process?” Quite a lot. I’m  grieving  differently in some ways as an atheist, than I would as a Christian. Which is why I chose to open this blog in this way. Some may pity me, thinking I have no hope for the future, of ever seeing Alicia again in the afterlife. I don’t know what to say to that, other than you’re right. I know the logical end to my line of thinking. While the idea of heaven is a comfort to many, it has become a false comfort to me. Rather, I’ve found comfort in knowing that I did my utmost as Alicia’s husband and caregiver, both to ease her suffering throughout that wretched cancer, and to give her every chance at survival. I take comfort knowing she was never alone. I’ve taken so much comfort in the love and support of friends and family. I also have no regrets that I did everything I could to support her spiritually, knowing how important it was to her. And, having a change in perspective meant I endeavored to cherish every moment we shared, every touch, every word, every act of kindness shown us by others. Just simply lying next to her in bed as she fitfully rested took on a whole new meaning for me. After she had passed in our home, I remained next to her for over an hour, smelling and caressing her hair, kissing her lovely face, holding her delicate hands, knowing it was likely the last time I would be able to do so.

This has taken considerable courage to pen. I have been, and likely will always be a people pleaser to some degree. Know that it is not my intention to cause disappointment or distress, but I realize that I’m being unrealistic in that regard. I would only ask that if you are a believer, that you treat me with charity upon reading these words. Alicia was the real deal. Although it was hard for her, she only continued to show me love and acceptance. I feel regretful for not being at liberty to share this earlier with so many loved ones, and you have my apologies if you feel I deceived you in any way. I only wish to live, and to grieve, in the most authentic way possible, and this is my sincere effort to begin doing just that.