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.
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.
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.
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.
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.
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.
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.
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.
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.
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
I cried for a long time.
* * *
realized the other night–watching her sing “Borderline” on Jimmy Fallon–that my
mom is (or was, rather) only three years older than Madonna.
* * *
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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!”
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