Tuesday, August 9, 2016

You want vicissitudes?

I'll give you some vicissitudes.

(Alternative title: Another Really Horrible Thing That Happened to my Family)

Life is... terrible. Have you noticed?

It is also beautiful.

The last few months have been an incredible case in point of these two realities.

A horrible thing happened two weeks after my mom died. Like, totally and completely, utterly messed up. In the way only life can be.

So, in this post I'm going to talk about some of the bad, and also some of the good, and I'm going to share the really difficult thing that has happened, and you need to brace yourself for a swear word.

This post is longish and meandering and sad and a little angry and confused, but also really hopeful and kind of beautiful. It's where I'm at these days.

*   *   *

Wrote this snippet a couple weeks ago:

Oh, grief and its wild permutations. Tonight it was the tube of toothpaste that I used to brush my teeth. I was in the downstairs bathroom, having finished the dishes late and not wanting to disturb Lolly, and I was in the middle of brushing my teeth when I noticed that the toothpaste was nearly gone. It was a tube of toothpaste that had been left by Jenni, my sister, when she was here for Christmas.

She had been here for Christmas, and then I remembered that Mom had also been here for Christmas.

Somehow, since Christmas, a tube of toothpaste has lasted longer than my mom.

This is not okay.

*   *   *
A few reflections:

May was a busy month.

There were four Weed birthdays. Lexie J's was May 11, mine was May 12, Anna's was May 16th, and my youngest brother Chad's was May 22. I mention this because there were a couple of weird, tragic intersections.

First, though, was Mother's Day, when I saw the final picture of my mom. She looked like a ghost, sitting awkwardly, holding a plant my sister had sent her. It was jarring. I must have sensed what was coming. The whole thing shook me, but I couldn't register what my subconscious was picking up on.

Later that week, Lexie's birthday was joyous, and she ate cake. Here's a picture.

On my birthday the next day, I yearned to honor Mom somehow. It occurred to me, for the first time somehow, just how much the day of my birth was an important day for her. It was the day she became a mother. I went out to Mexican and ate a chicken chimichanga (her favorite) in her honor. My day was filled with reminders of her and distractions from her. Late that night, my brother Chris and I talked. "She is going to go," he said. "I felt prompted not to take classes this semester. I really think she's going to go soon." I could tell it was true. It still felt distant and vague.

Four days later, on Anna's birthday (16th), I got the text saying she had taken her last bites of food and had been put on Morphine. I couldn't concentrate at dinner. I decided to book a flight. It kept occurring to me over and over "I'm going book a flight to see my mom for the last time." It felt surreal. Anna was very sweet and understanding when, instead of doing cake, I had to go upstairs and crawl in my bed.

Flew out to Idaho. Was there five or so days. The last day was Chad's birthday (the 22nd). This was the day I said goodbye. We had all prayed mightily that she wouldn't be taken that day, to spare Chad the coinciding of these two events--having to share his birthday with such a sad thing would be particularly cruel. Saying goodbye to her was one of the hardest things I've ever done. I talk about that dreadful day here.

I flew home.

The next six days were a nightmare. I don't know if I've had worse days in my life. I was in bed, flat on my back, in emotional agony. Occasionally I would talk to Jenni who'd also had to go home to take care of her family. When we'd all been together, the pain was manageable. Now it felt unbearable. She and I would chat several times a day. We didn't really commiserate--there was no need to. There was just simultaneity--we were having identical experiences and we knew it. No need to comment on it. Just lengthy, empty, painful conversations about who-knows-what, peppered with things like "can you believe this is real?" and "when will she finally go?" to keep our minds off of what was happening.

I tried to go on runs. It was my big event of each day. I'd roll out of bed in the evening, run a few miles (and cry as I ran--I'm sure I looked like a spectacle) then take a shower and crawl back into bed. I tried to eat at least one meal. If food was placed in front of me I ate to bursting. If not, I ate nothing all day.

In my profession, I'd talked a lot about grief. I knew all the stages and symptoms. I knew it would be terrible. But this was the first time I'd come to know it on this visceral, personal level. Its ability to incapacitate. The way it deadens everything, and distracts a huge portion of your brain from everything else. Like brain damage.

For six more days she did not die. And each day was spent pleading for and dreading in equal measure the call I knew was coming.

It happened on the 28th.

That morning, I was up writing a poem (about her) early. I couldn't sleep. I listened to an interview of Ezra Koenig, pressing play, then play, then play on each segment until it was done. The sun was up. I went upstairs and lay down intending to go back to sleep. I started reading a story by Annie Proulx. It was several pages into this (or maybe I'd fallen asleep a wink?) that I heard Lolly's phone ringing and, in one of those flashes of intuition that are inexplicable, I knew what it was, even though it wasn't even my phone that was ringing.

I looked at the phone. It was Dad. I didn't pick up because, though irrational, my brain told me I needed to hear this on my phone. I searched for my phone. It was downstairs on the windowsill. I picked it up. Dad and my brother Chris had both called. Chris had left a message. "Hey, Josh, this is Chris," his voice was cracking, "just give me a call when you get a chance. Bye." I went into the closet in the master bedroom to be alone. I prefer solitude in moments like this.

I called Dad. He did not answer.

I called Chris. He picked up. "She's gone," he said simply. I started crying. I thanked him and told him I'd call Dad later and hung up. It had finally happened. She had finally gone. Shellie Weed had gone.

I cried for a long time.

* * *

I realized the other night--watching her sing "Borderline" on Jimmy Fallon--that my mom is (or was, rather) only three years older than Madonna.

* * *

The days leading to the funeral are a blur. Pain. Disbelief. Relief. I posted to Facebook which felt monumentally difficult but necessary. I helped some with arrangements. We drove to Utah.

The funeral was not in May. It was June 2nd.

I talk about that morning here. It was a brutal, cold, lonely morning. I had to go early to practice the piece I was playing. I got there. I practiced with John, my accompanist. Then I put my violin away and it was time for the viewing.

The viewing. The last time I'd ever see her.

The room was full of family--some close, some distant, all there to honor this great woman. Mom looked serene, yet totally unlike herself. Her make-up was done like an elderly person's, not like a woman just emerging from her fifties. I walked over to the coffin, looked at that caked-on layer of cosmetics, and wished for something, anything, that would remind me of her, not this weird vision of kind-of-her. And then I looked down. I saw her hands. Yes, those were her hands! They were the hands of a middle-aged lady. They were not old and decrepit. They were hers. Her exact hands, with her fingernails that jutted outward slightly as they always had--just like the fingernails of several of my daughters. I touched those hands for the last time--touched my mommy for the last time, and though cold and stiff, they felt like her.

I went and stood by my Dad as the rest of the extended family paid their respects. And then, as my sister, Jenni, placed the veil over her head for the last time (flash: going through the temple for the first time, standing next to her, feeling her hand in my hand there) I started crying openly. So many last times: this was the last time I'd ever see her face.

Then the service. My aunt gave a beautiful tribute. Then me. I played, and sobbed as I played. It felt as if the violin was crying with me. And then I went straight into speaking. (This was poor planning.) I couldn't keep myself together at all. I was crying so openly and so loudly I had to apologize several times and just blubber. I'm sure my Grandma Mousley--my mom's mother who was there watching, and whose basic philosophy has always been "composure in all things"--was horrified by this public display of emotion, but of course I cried for my mom at her funeral. Of course.

I said my words. My siblings spoke and said theirs. My dad spoke and opened with a joke. He riffed on the fact that the song I played is often accompanied by a famous ballet portrayal made famous by Anna Pavlova, saying something like "As Josh mentioned, there is a beautiful ballet that goes with the piece shared. I will be performing that dance for you now..." It was legitimately funny, and so perfect. He then spoke such beautiful words about his beloved. My heart was full, and my sorrow was also full.

The burial came next, of course. It was bright and sunny. I was tired. It had been a long day/week/month/year/decade.

With her burial came some level of closure. My mind was able to click into the fact that it was over. The horrible journey of Alzheimer's was, at last, over. I enjoyed the remaining days there with my family. We grieved together, and ate together, and laughed together. Best of times and worst of times and all that jazz.

And then I came home. I started back at work in earnest. Losing myself in other people's stories was good for me, although I had absolutely no bandwidth for much else--I avoided most social things and I couldn't tolerate hearing anybody's stories in social settings (which is normally something I actually enjoy). I had no room to hear other hard things--I'm still in that place to some extent. I was in survival mode. But I was doing it. I was surviving, and the very first tendrils of healing started to unearth themselves.

*    *    *

And this is where the story gets ugly and confusing and brutal.

One of the things I have most looked forward to as a result of Mom's death--something I've pined to see since she first started her decline, and my dad sacrificed everything to stay with her--was the emancipation her passing would bring him. He is relatively young. He wouldn't even be retired yet had this not happened. He has decades of life ahead, still. He has so much to do and accomplish. No, he will not be able to serve the missions that he and Mom had planned and saved for since I was a child. But now, untethered by the weighty responsibility of being a caretaker, he could start afresh.

I was looking forward to watching him regain his life--a new, different life, tinged with loss and sadness in some ways, but beautiful and productive all the same.

13 days after burying my mom, Dad had an MRI.

Two weeks to the day from placing his wife in the ground he got the call saying that he has Multiple Sclerosis.

Again, we all got a confusing, terrifying call saying that our parent had a chronic, non-curable, degenerative disease. Again we felt pangs of denial and confusion. Again there were talks of diagnosis and prognosis and life-expectancy and coping. Again there were prayers for the miracle that would probably never be realized--a cure. It was happening again. We had just buried my mom because this happened eight years ago, and now it was happening again.

I can't emphasize how traumatic this has been for us all--for me and my siblings. And I can't even begin to fathom how breathtakingly difficult this is for my dad.

And why now? Why two weeks later? Why could my dad not have had a moment's peace? Why could he not have some relief after all he did for her?

The irony. The bitter, soul-crushing, faith-challenging irony.

There is more irony and tragedy that I can't even mention, but believe me when I say: my family has been through hell these last three months.

At first, everyone I talked to tried to tell me how totally okay this was, how totally unlike Alzheimer's M.S. is. It's the teeniest, tiiiiniest, chronic degenerative neurological disease! Ever so minute! It's not a death sentence! they would say.

Except, yes it is. Not in the same way as Alzheimer's. But when M.S. reduces your life-expectancy by an average of about ten years and you get it when you're 61, how could it be viewed as anything but that?

Not to mention the fact that the disease can be so brutal, so unyielding and unforgiving. Dad could be a wheelchair in five years for all we know--or sooner. There are different paths the disease takes, certainly. Perhaps we will see miraculous things happen. Perhaps life will be merciful. Perhaps this diagnosis will somehow not be significant and tragic and life-altering and horrible. Perhaps.

But when you see your mother get a disease like Alzheimer's, and everyone around you sighs and tells you anecdotes about their grandparents saying funny things and forgetting to buy milk, and then you see the way a disease can demolish a life--swiftly, brutally, unyieldingly, with terrifying speed and total humiliation and devastation, until they are brain-dead wearing diapers in a bed on Morphine for 12 days before being lowered the ground in a wooden box--it's difficult to pin your hopes on the vague possibility that this new diagnosis of a horrible, degenerative disease will somehow be merciful.

Sure, it might be. But that's not the point. The point is this is happening. The point is it could be, and probably will be, absolute havoc. The point is my dad is already physically wiped out by the symptoms, and half his face is paralyzed, and he almost lost total vision in one eye. The point is that when something like this happens, a person needs you to sit with them in the horror of it and not point to some wispy, vague, unlikely possibility of healing or hope, but instead just hug you and say that fucking SUCKS

Because it does. And it just as likely might rip my dad away from us brutally and horrifically as not. No platitudes, please, then. Please no more of that. No more articles about miracle drugs and testimonies about essential oils and amazing life-saving berries and scientific breakthroughs. I've already had ten years of that, and we tried many of them, and not a single one of those things kept my mom from her speedy trajectory towards that box in the ground.

I'm good, thanks. My dad is a smart man. He, and his doctors, will figure this out.

Eventually, I realized this was people's way of dealing with their own horror of looking at me, two weeks after burying my mom, and seeing the trauma and pain in my eyes. And I don't begrudge them that. It really, really is horrible.

So, yes. Vicissitudes. Life has them.

I spoke in this post about sweetness and my family and my hopes for 2016, and my gratitude that my entire family was still here on Earth.

That has changed now. 2016 has been a year of profound suffering, of painful loss, of national tragedy, of obscene racial inequity, of disquieting bigotry, of political upheaval, of seeing pictures of children I actually know carrying their sweet gay friends--also children--in caskets to their graves because of a church policy and a beloved faith community that consistently, unrelentingly tells them they don't belong here and/or don't exist. It's been a year of confusion and crisis, of feeling rejection, of losing once-supportive friends, of horrific news, of loss, of tragedy in the absolute worst and most unimaginable shades scopes and depths. I haven't even mentioned all that's happening to me and those in my immediate family, but believe me, it would chill you to know of the depravity and horror and irony and brutal timing of it all. People I love are suffering in ways unfathomable. 

And yet--and this is the gift life gives us, I suppose; these are the vicissitudes that make this experience valuable and worthwhile--there is still hope.

Little things.

--I've been writing more, and my poetry has begun to reach a state of quality I have yearned for my entire life.

--My memoir has shifted and morphed and is becoming something more beautiful and heartfelt and meaningful than I ever imagined possible, and I can't wait to share this multi-year project and journey with you all.

--I felt my mom. I might write about it in more detail another time. I didn't feel her for a long time after she left, and I wondered if I ever would. Her death, as the cold reality of death is wont to do, made me reflect in new, literal ways about what happens next. Was all I've believed about life after death a fanciful fairy-tale? Was the atomic and chromosomal make-up of my mother's person all there was to her, and was that pile of matter sitting in that box in the ground, rotting, never to be sensed or heard from or felt again except in dreams and memories? Was that the logical, scientific end, really, and I'd been deluding myself about spirits and feelings and visions and visitations all along? Was all of that an anthropological defense mechanism against the unsettling impermanence of existence and our desire to remain connected to those we love, because we are animals who have cognition and fear death and crave continuity? These weren't mere musings--I really wondered these things as I watched my mom hanging in a casket above her hole in the Earth soon to be lowered, and for weeks afterward. I hoped for a visitation--some appearance that felt real and vibrant where I could sense her in ways science could never assess but that felt undeniable and real to me--but I wasn't counting on it. But then, in probably the most unexpected moment I could conceive of, it happened. It happened in a way I could never have anticipated, with enough random synchronicity and beauty and heartfelt tenderness (such that in the end, my entire tiny family was holding each other in a group hug in the living room crying together, feeling her presence) that I have something to hold onto, and when I choose to believe in what happened to me, and what my mother communicated to me (instead of viewing it with the pained eyes of the cynic, which do appear from time to time), it heals my soul and gives me understanding and perspective and hope. This experience was an undeniable gift.

--I have had other spiritual synchronicities as well. Things that have the signature of the Divine. Things that are beautiful and personal. Small, meaningful things that--when taken in totality--add up to power and meaning and a life-mission that has merit and importance even in the face of all this horror and loss. And that also add up to Heavenly parents who love and cherish me, my wife and my girls in ways I am only beginning to understand.

And on that note, I will share my most recent cherished vicissitude.

We drove down to Utah, and my entire family (minus my sister Maquel who had to remain in Nebraska, though she was deeply missed), and most of Lolly's family too, gathered for two important religious rites on Saturday: a baptism, and a baby blessing.

The day started with something even more unlikely and unexpected: a family reunion put together by my Dad's cousin Shanna Hardy, whom I'd only recently met. I had never been invited to a Weed family reunion in my life. My grandparents divorced in 1958, and my dad went with his mother, and he didn't see his father again until he was 17 years old. He was lost to the Weed side of the family. We all were. But in a strange sequence of connection on, of all things, Facebook, (thanks Chad Perkins!) I met my dad's cousin, and recently went to visit her when we were at Disneyland. And I met my dad's only living aunt. And I heard her tell jokes, and say things that sounded so familiar, and it was so uncanny--like I'd been hearing it all my life, only we'd just met. I sang songs with Shanna's daughters and we compared pictures and notes. And then, Shanna reserved a park in Utah and invited all my dad's estranged family, and we all got together and shared desserts and talked and met each other for the first time. It was so strangely wonderful and beautiful. We all looked somewhat alike, and we all felt the ropes of family connection somehow, and instead of playing the planned games and sports Shanna had brought, we all just talked. We hugged and laughed and connected. It was really, really lovely. And my Grandpa's older brother Gordon, who is 90+, gathered the family together--for the first time, really--and said a prayer as the patriarch of that family, and he blessed us all--as a unit, as a group, as a family.

 Bet you want some of these Weeds in *your* garden, dontcha?
Family... isn't it about time? (Yes. It's ABOUT FREAKING TIME WE WERE A FAMILY AGAIN.)
"What do you do with a park pavilion? You putchyer Weed in it!"

It was truly wonderful. It was connective in ways I needed, but simply didn't realize I needed. It reminds me that family is one of those phenomena that we simply don't understand fully, but whose importance cannot be underestimated (and whose influence cannot be escaped from!)
Then, later that day, my family and Lolly's family all got dressed and drove to a chapel in West Jordan, Utah. And my little Viva and I put on white jump-suit-thingies. And Lolly's brother conducted a sweet baptismal service (combined with Lolly's sister's baby blessing). 
Viva was nervous, so we practiced in hallway beforehand until she felt ready. Then we walked into the warm water of the font, and I raised my arm and said her full name--Olivia Michele Weed--and then I baptized her. I was not expecting to feel so moved, but I cried as I walked from the font to get dressed. The feeling was sweet, calming, peaceful--that oh-so-familiar feeling, which is indescribable, which we call the Holy Ghost. It is a feeling I don't feel as strongly in any other context. And it was strong and beautiful and very clear in that moment, and I felt so close to my daughter as I pulled her from the water and she looked up at me and laughed. And close to God.
Afterwards, my dad got up to share some words on the Holy Ghost. And he was crying. He had forgotten Viva's middle name. It had taken him by surprise to be reminded that she was named after my mommy. He said, "You'll have to forgive me. It's only been two months since she left us." And he paused and collected himself for a moment. Then he talked of missing her, and of the ways in which the Holy Ghost had fulfilled its role as a comforter since she had passed. 

And then Viva sat at the front of that room, and I placed my hands on her head, and was joined by the hands of all of the men in that room--a network of masculine support and family that loves and adores her--and I used the Priesthood to give her the Gift of the Holy Ghost. And I said a blessing that contained phrases that didn't come from just me, and that spoke of a wonderful, beautiful life, and of her connection to Deity.

There are still so many questions I have. Even about those ordinances. (Why only men? How does this work, really? What does it all mean here and in the hereafter?). But the actual events--the actual acts themselves--were crystal clear, and so obviously a gift from God to me and my little family, there in that tiny corner of the Universe. 

I don't know much. And a lot of the things this year has brought me have been horrific spirals of pain and complexity and confusion. But that day was simple and beautiful, and the feelings of joy and connection and peace--and of the Holy Ghost--were undeniable and unforgettable. 

The Lord giveth, and the Lord taketh away. 

 Blessed be the name of the Lord.