muddy feet memoirs

The Chronicle of My Comeback

Category: Death and Dying

6 months

No Visitors Sign

Six months ago today was Jay’s last day alive.  It was a beautiful day – prefect Northern California sunshine with a breeze from the Bay that ran right through the house because the front and back doors were propped open.  Until then, for his final month, we relied on a home-made sign hung beside the front door to keep people away – largely because Jay had lost interest in hosting the onslaught of death-pilgrims and he (we) needed quiet time together.  But that day was different.  Food Rescue harvested in the morning, collected from the Farmers’ Market in the afternoon, and filled the house with a happy buzz of people for most of the day.  Dear friends were on hand to take their turns with Jay (who was no longer responsive but whose spirit was still present).  I even spent a luxurious uninterrupted hour downstairs chatting with wonderful people about things completely unrelated to what was transpiring upstairs!  One of Jay’s most beloved friends, Teresa, whispered in Jay’s ear as she heard me laugh downstairs “You hear that, Jay?  That’s Adrienne laughing.  She’ll be OK.  You can go.”

There wasn’t anything particular about Jay’s condition that day than hadn’t been true for many days before, but for some reason (probably because it was a Saturday, or maybe because he called them) we had a lot of visitors – the door was open and the sign was down, and they came with ease and joy in their hearts.  The last visitor was another dear friend of Jay’s – Mara.  She arrived long after the afternoon visitors had come and gone, leaving at midnight.

I had enjoyed a lovely day-off in many ways.  Most of our last month together I spent staring sleeplessly at him from the foot of our (now my) bed, not wanting to miss a single moment with him, but that day I was allowed a break.  When Mara left I stayed downstairs for another hour, enjoying my solitude and  the comfort I had been afforded by so many loving people.  And then at 1am I found myself walking upstairs without having made the conscious decision to do it.

Jay’s breathing was shallow and fast.  I gave him his scheduled doses of methadone, phenobarbital, liquid ativan and morphine, and though his breathing calmed down I knew it was time.  I went downstairs, got my bottle of wine, came upstairs and settled in next to him.  His spirit was already gone, but tethered to his body like a weather balloon high in the stratosphere.  I stared at the tumors protruding from his chest and rib cage, his breathing still strong despite a year’s worth of lung surgeries, and I hated his body for the first and only time.  It no longer housed my partner, it was just an elaborate petri dish for cancer.  I can’t remember what words I spoke to Jay that last hour of his life, but I was ready and so was he.  Jay died at 1:58am Sunday March 23, but really – for me – it was at the end of a long Saturday filled with love and a breeze from the Bay.

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Dear Jay #3: It’s Over Between Us

Relationships are dynamic – when they stop being collaborative they die on the vine.

I’ve tried to think of us as the ultimate long distance relationship, but the thing is this:  I keep growing, and I’m growing past you.  You’re static, exactly where we left off, but I’m light years past that now.  Your death, and ALL the bullshit that came along afterwards, has propelled me into a completely different world.  I try to imagine you in bed next to me giving me one of your pep talks, but it’s just a memory.  I’m alone with this – all of it.  Erin’s heartlessness, the pointless fight over your Life Insurance money, losing the kids, the ruinous debacle at the school, my decision to not run for office, the blooming 8ft weeds in the backyard, the broken cars, my empty bank account, my debilitating depression…  fuck.

I’m glad to hear that you’re visiting friends in their dreams – it sounds like you, the stories they report, and so I believe that you are with us.  I’d love it if you came to me in a dream again, but that’s all I have to hope for with you – a cryptic vision from my subconscious, a Jungian interpretation.  What I don’t have is your support.  I don’t have you to forge ahead with.

I took my wedding ring off.  I know you’re not coming back.  It’s over.

 

PTSD & My Fucked Up Heart

In the five + months since Jay died I have known 3 people diagnosed with cancer and three people die of cancer – the majority of them young.  This does not include the folks in my cancer support group and their escalating maladies – the majority of them are young as well.  I have a lot to offer these patients and family members – insights from four years in the trenches – but the onslaught has me hiding under my covers.  Trench warfare can leave you with emotional trauma.  Do I have PTSD?

I find myself reflecting on the people who disappeared when Jay was in treatment with renewed compassion.  Some people were uncharacteristically mean, some shockingly glib, some total chicken-shit – folks I would have never expected to behave the way they did…  but seen through the lens of trauma I think I understand.  I do understand.  I have found myself glib lately too, uncharacteristically so.  I look into myself for reserves to share with people who have given me so much and instead I find anxiety and exhaustion.  That PTSD question was rhetorical.  I know the answer.

I am not sure how well I can support my friends-in-need while hiding under my covers – I’m open to suggestions.  But I do know that forgiveness is healing, and whatever grudges I’ve held towards anyone who failed us I can feel melt away with my new understanding of Post Traumatic Stress Disorder & my own fucked up heart.

No hard feelings.

 

 

Dear Jay #2: I’ve been talking at your picture lately

jay and his bike

Hey baby,

I changed my screensaver to one of my favorite pictures of you – when you posed with your new bicycle right in front of the roses, the bike the kids and I bought for you.  There are a lot of pictures of you from that time – it was one of those birthdays we thought would be your last (but you made it practically another 2 years!).  I remember the importance of buying you something that had value and shelf-life…  it was symbolic on a host of levels.  Years before you sold your original bicycle just after your divorce.  It was like cutting off a limb, but it fed your kids…  Having something to ride again was profound, especially since that heavy cloud hung above us suggesting “why buy something for the guy who will be dead before he can enjoy it?”.  The look on your face in this photo is the unspoken retort.  You are my most beautiful Jay in this picture.  You even have on the clothes I imagine you have on right now:  those Old Navy cargo shorts, the long-sleeved brown Henley you loved, and your well-worn Oregon hat you wore daily – backwards.  And that handsome grin, with those sideburns and that beard you worked so hard to have.  My perfect Jay.  When I boot up my computer I take a minute with you every time.  I love you, baby.

I’ve been talking at your picture lately.

I took the last few days off to go to the beach with Nina and Stella.  I’ve had a lot on my mind, and though I kept talking to your picture I wasn’t getting a lot of feedback, so I went to listen to the beach instead.  We stayed at Doran Beach – you remember that time we took Stella for the day and it was so rainy and windy no one dared the water?  And Stella begged to take her clothes off, so when I said ‘no’ she ran into the water fully clothed?!  We were there, but this time Stella wore swim clothes…  she was still the only person in the water, but at least she had something to change into afterwards.

Anyways, I’ve really missed you lately.  Missed you as a partner, as a parent.  As a sounding board.  I’ve had so much on my mind.

The night before we left, Stella and I watched part of a PBS series on Ghandi – I asked her to please watch it with me.  I was then inspired to pluck a collection of his works from the bookshelf to bring to the beach.  If your gorgeous picture wasn’t going to talk back to me I might as well try another, less attractive saint.  I think it might have worked.  It’s a good thing saints talk through the ages, because Ghandi’s writings were largely from the 1920’s.

I read about service without attachment to the fruits of work, about truth-force, community, refusing to be an agent of deceit, sacrifice, remembering everything is a gift from God in service to our realization of him…  I got sunburned at the beach (praise him!).

We all returned home with a fatigue that only days at the beach can produce.  Stella and I showered & lounged in our towels, too lethargic to say or do much of anything, until Stella piped up saying “I’m sad”, looking at the bookshelf displaying Quinn’s most precious belongings.  “Me too,” I said back.

I look at the kids’ things and remember how fractured we are.  I look at your picture and remember how whole we became.  I miss you, baby.  I wish you could talk back.  My insights from hanging with Ghandi on the beach will come soon.  Until then, please know that I love you and I will likely never stop talking at your picture.  If you have time, please visit me in my dreams.

Yours,

A

Baby Jay

baby jay

Jay has died.  He died early on March 23, 2014.  I have so much to write about that I have been unable to write…  It will come.  Today I have a very short story for you.

This morning Ira, my sweet little man who lost his father to cancer a year and a half ago, accompanied Stella and me to school in the truck.  As we bumped along he asked us “Has Jay been to visit you yet?”  I told him honestly No, as did Stella.  Ira said, “Well, I just saw him in a dream.  He was drinking beer with my dad.”  To which Stella asked “Was it Fat Tire?  Fat Tire was Jay’s favorite.”  Ira said “Yeah, it was Fat Tire.  My dad was drinking Dos Exes.  They were smoking cigarettes – Jay had his little tobacco with him.”  I told him that was excellent.

I dropped them at school and came home to work in the garden.

In all honesty, I have not slept for months. The memorial service on Saturday seemed to last – on some level – through Monday.  I have barely gotten out of bed till today.  I chose today to tend to the garden.  Spring is more than warm in Vallejo right now, but I have tomatoes and green beans to plant, and a wild garden to consider.  Once I was out there I couldn’t stop futzing.

I have a pregnant rabbit, due any day now.  I planted a 4×12 bed of tomatoes.  I let a rooster out to graze despite the code violation.  The artichokes are coming in hard and fast.

In my compulsion to be outside I made yet another pass, maybe 10 minutes after my last pass, and I saw Cow sniffing at a little grey fluff on the ground just under the oak tree, just beside the rabbit hutches.

A baby Scrub Jay lay on the ground.  She clearly had just hopped out of her nest.  I scooped her up and she nestled into my hand – just a few feathers had replaced her down.  She could not fly.  I carried her to a garden bed and dug with my free hand for worms – she seemed disinterested.  I brought her upstairs, placed her into a cloth napkin and put her in a casserole dish near the sink.  I covered her with a lid – off kilter for air – and Googled how to care for baby Jays.  Seems it’s not legal to care for wild birds…  I then went to our local feed store – Powell’s – and they sold me a small cage and baby bird formula.  So arrest me.

Poetically there remained one last syringe from Jay’s last days – one through which  I fed him Phenobarbital, Methadone,  liquid Ativan and/or Morphine…   one that somehow missed the purge of all things medical after Jay died.  Today I found that last syringe and it fed our baby Jay the contraband formula hustled from the streets of Vallejo.

When I picked Ira and Stella up from school I told them about the new baby Jay, how it seemed like a sign.  Ira said “I hope Jay visits me again.”

I can’t help thinking it really was a visit.  Another Jay for me to love, care for, and let go.  Brings me joy.  Makes me wonder.

Live Like Jay

Live like jay

Jay is dead.  He died early morning on Sunday March 23rd, 2014.  I have many, many blog posts in my mind – things I’ve reflected on during this past month – but today I have something more immediate to say.

Jay was the kind of person who made friends easily and kept them forever.  People were drawn to his warmth, his quick humor, his earnest interest in others.  Jay was a writer and moved people with his honesty and optimism.  People started looking up to Jay.  He had followers.  He influenced people and inspired them to live fully.  Our friend Mara found a picture online – graffiti on the side of a wall somewhere – that said “Live Like Jay.”  It became a Facebook phenomena in our little world.  People started using that phrase.  They took it to heart.

Living Like Jay means being a good person.  Choosing right actions.  Prioritizing family.  Being brave.  Being in love.  Finding the good in whatever we’re faced with.  Together we were each other’s anchor, each other’s reality check, and now I have to learn to Live Like Jay.  Or rather I no longer have him to talk to after the kids go down.  I can’t ask him to talk me out of a tree.  I am unable to lean on him as my moral compass…  I just have to reflect on those times and learn to do it by myself.

As I watched him die slowly – weeks went by – I bore witness to his process.  His life reflections, or his astral travel, or hallucinations – whatever you want to think.  I laid on our bed with my head at the foot, watching him from below as he pantomimed this process (his hospital bed next to me).  He enjoyed people’s company, broke bread and relished long meals, chose books to read, taught his children to cook, made grocery lists and menus…  his last weeks were filled with dreams of things that made up his life.  He was sweet and content.  It gave me some relief from the great sadness of watching him go.

It struck me, as I took notes at the deathbed of my true love, that this life may only have one single purpose – to choose love as deeply and as frequently as possible.  That our time here (oh yes, my thoughts on the afterlife developed during this time too) can be boiled down to how well we chose love over lesser things – money, prestige, power.  Kindness is a hard practice sometimes.  Honesty, integrity, compassion are easy for us to postpone for more immediate goals.  Being a good person is extremely under-rated.  Yet I wonder about the life reflections of people less content than Jay…  how their shame and hollow choices may influence their last days’ dreams.  We make our own hell, and I think that may be it.

I was immediately tested after Jay passed and I have struggled this whole past week, grappling with how to respond to an ugly power play by his ex, Erin.  She intends to take the Life Insurance in whole.  I was made beneficiary because she is manic with money.  Jay wants to see the majority of it saved for his kids for when they are entering adulthood – something he cannot help them do.  She will no doubt burn through it in a year.  She kicked him out 5 years ago but allowed him continued access to her health care – about 2 million dollars worth of it in the end.  Imagine how stunned I was to hear that she had called the mortuary the morning after he died to make claim to him as her “legal domestic partner.”  She wasted no time.  It’s disgusting.

And so there I was on Monday afternoon, March 24:  Jay has been dead for maybe 38 hours, I’m still surrounded by Jay’s dirty sheets, the catheter and wet diapers and empty pill bottles left behind after his body was taken from me in a big white bag…  and I’m faced with this selfish, mean, underhanded situation.

If I am to Live Like Jay, how?

I think of our kids.  Jay and I worked the entire 4 years of his cancer treatment to ensure a sense of stability for the kids.  They know that things are not as they were promised.  They know that being kept from me is not what Jay wanted.  I must model the behavior they need to see.  Animosity supports their life in no way.  I will be kind when I want to lash out.

I think of Jay’s optimism.  He wanted to see that money last for his kids because he couldn’t, but if it goes then it goes.  If Erin lights it on fire then the kids will know that.  Jay and I showed the kids how to live simply with joy and a love of good things.  They will always have that.  That is really his inheritance to them.

And I think of the love we had (and I still have).  I have lost Jay.  Nothing else can be taken from me – not of substance.  If the small amount Jay intended for me is available I will use it to support the kids.  If not I will still support the kids.

It is an easy vortex to get sucked into, when a person is trying to pull a fast one and treats you like garbage, but I choose to resist.  Every night this week I have laid on our bed alone, trying to pull my thoughts out of the smog of Erin’s tricks.  And then I remembered to Live Like Jay, and the smog lifted.

From Partner to Caregiver: Breaking Up is Hard to Do

dancing with death

For those of you who might think we’re the perfect couple, saints embraced, waltzing our way to the after life, allow me to burst your bubble.  I spent the day PISSED OFF at Jay – like “Go Fuck Yourself” pissed off.  All because of something he said last night – something he has no recollection of today.

His mind is starting to waver.

(Insert your favorite expletive here – and if you really want to feel it with me, scream it at the light posts from your front porch).

No need to go into details about last night because they no longer matter.  One of the great heartbreaks of ushering your partner into death is that you are helping them leave you.  Your love for each other (hopefully) gets stronger but your partnership weakens, like the body.  Early death is a mandated breakup, one that is best done with pure love and devotion.  It’s a paradox.  What’s worse is that it is not shared equally, as everything else should be in marriage.  The quality of the breakup is on the shoulders of the one being left.  It’s fucked up.

Please feel free to scream at light posts anytime.

Jay and I both think he’s got about 1-2 weeks.  His symptoms are spot-on. His memory loss has been creeping up on him, but tonight’s revelation – saying something uncharacteristically mean to me and having no memory of doing it – that’s new.  My hope is that it’s because we were already having a heated conversation about his ex’s determination to take the kids from me.  I guess that business is just between me and Erin now.  And the courts, but that’s another story.

Suffice it to say, it’s my job to keep him at ease no matter what’s going on in my life.  I’m moving from partner to caregiver.  I can sense the breakup on the horizon.

Ce la vie.   Ce la mort.

Jay’s New Digs in the Land of Nod

Sleep

This picture hangs in our bedroom, an artifact passed down from  Jay’s grandmother – or great-grandmother?  It is a sweet Victorian print that – as artwork – makes little sense amongst our collection of ethnic textiles and modern paintings.  A child safely sleeping in the woods, protected by the vigilant devotion of the family dog…  we keep it on the wall above Jay’s dresser.

Jay has moved into the phase of death in which he sleeps most of the time.  Seventeen hours of sleep doesn’t leave a lot of time for things in this world, but it’s my impression that plenty is getting done in the Land of Nod.

Unlike the dreams I’ve seen Jay have in the years we’ve shared a bed, his hours asleep seem filled with pleasant conversations.  He pantomimes eating (something he’s given up in this world) – even brushes off his beard!  His hands are folded in prayer, pointing and beckoning to folks he’s glad to see, writing with a stylus, typing something on his chest…  he woke up for a split-second this morning with a smile on his face, said “Hey baby,” then went right back to where he had been, the place that smile originated.

About twenty years ago when my grandmother was dying she told my father (her oldest) that is was as if she was going to the Land of Nod.  Raised in Ireland I assumed it was a remnant of her childhood.  Now I think differently.

Jay has been extricating himself from this world for some time.  He has been letting go of the things he can’t take with him, helping us adapt to life without him incrementally.  Supposedly you can’t take anything with you when you go but I’m starting to question the certainty of that…  maybe upon your last breath you leave with just your soul, but I get the feeling that Jay’s been packing and moving pretty actively these days.  We know his heart is big enough to be in two places…   I’m charmed to think his appetite is still with him somewhere he can enjoy it!

In this world he’s giving away his photographs and clothes, and in that world he is settling in – sharing embraces and breaking bread with his new neighbors.  The Land of Nod.  Is it heaven?  Or, as Mormon missionaries would recognize, a kind of Missionary Training Center – a place between places?  Jay has no memory of these seventeen hour dreams when he wakes up, but I can tell he is happy to be there.  Which brings me comfort as I watch his body slip away.

Jay Feb 25 2014