"if it weren't for my horse, I never would have spent that year in college..."

If you’re a Lewis Black fan, you know by the title  exactly where this post is heading.    If not, I can only explain it as a beautiful story/joke Lewis tells to explain that sometimes you hear or read something that is so insane that it will cause a terminal loop in your brain, and if you don’t have someone to help you work it out, you will shortly die of a brain aneurism. 

Enough with the introductions, let’s start the show….

I have spent several hours since yesterday working on the terminal loop the nurse injected in my brain when she responded to my pain of leaving Rich’s  bedside with…. “That’s okay.  Not everyone can handle this.”

I will spare you the details of my efforts (although I did attempt to make a song of it in hopes I could sing it to conclusion, but I couldn’t make a rhyme for “handle this”.)

Lewis is right.  You need another person to discuss it with in order to make it go away.

Today, I have to encounter that same nurse again, and she now scares the shit out of me.  In the hallway, before I get to his room, there she is and she wants to give me report.  Since 93% of communication is nonverbal, I assure you that without the words it was like I was picking my child up from day care and she was telling me all the amazing new things Susie did today.  

I sat with Rich a while.  And yes, he’s “doing” new things.  I stop on my way out to let her know I’m leaving and she smiles brightly and says, “So what do you think?”  I confirmed every “new” thing.  And then, coward that I am, I said, “well, I’ve got to be at calling hours for a friend at six.  In Canton.”   Luckily that’s okay and she’ll call me when it’s time.

Give a  big round of applause for our opening act, folks.  And now the headliner!

Last night, after I posted that last entry, I poured a glass of wine for me and my own best friend, and started flipping through the stack of mail that has been sitting since Monday.  Just in case there was something that needed immediate attention.

There was a card from the hospital.  I read the return address again, but it is a card.  I know this because it’s not an official No. 11 envelope.  It is the size, weight, and feel of a greeting card.  It’s addressed to Rich but I’m in the mood to break some federal laws so I open it.

Yep.  It’s a card.  

On the front of this sky blue card is the name of the hospital, the hospital’s logo, and the hospital’s “tag line”.  I love the tag line.  “the choice you can believe in”    I love this line because the use of the word CHOICE in any way related to medical care just makes all the Voices in the Van giggle.  

I’ve been three years down this road, and I work in a medical office.  If there’s one thing I know, its that the only, the ONLY one who has choice in medical care is the insurance companies.  I don’t know who the hospital’s ad agency is, but I hope they’re getting big bucks.  Because if you can sell that client on that line, then you’re selling something.

I open the card.  Printed on the inside, identically, is the hospital’s name, logo and tag line.  Just in case I missed it the first time.

There’s more.  Someone.  Assumably a primate with an opposable thumb and a basic grasp of the English language has written in cursive, in ink,  the following……

“Rest Well.  Feel  better soon!!”

Take a minute to let that sink in.

It was signed,  “the staff of 5400”.

I read the card again.  Again.  And one more time.  I closed the card.  Stared at it.  Opened it and read it again.  I looked at the envelope again.  It was postmarked Jun 1 2012.    I studied the card.  I read the card again.  Because I for damn-shit-sure do not need another terminal loop seeping into my brain.

I could understand a computer generated faux paus.  But a two-legged person had a hand in this.  immediately I start formulating a defense for this well-intentioned act.  Okay, they didn’t know he was going to hospice.  Still, it was generated by the oncology floor, so I knew they knew he was going to hospice if he didn’t die in ICU first.   I can make no sense of this.  I can feel the terminal loop carving a comfy spot in my grey matter.  Shit.

 I can rattle off six preferable warm, fuzzy sentiments far more appropriate for a patient leaving the oncology floor for any reason headed to god knows where.

“Thank you for allowing us to care for you.”    

“Our thoughts go with you.”

Blah, blah blah.

I pour another glass of wine.  Because there ARE the two of us here--me and my own best friend.  And while I’m thinking of it, the Voices now leave the van when we get home and wander about the house just to keep me company.  Hell.  We could kill the whole damn bottle.

I read the card again.  I examine it thoroughly just shy of dusting it for finger prints.  I am that intent on trying to make sense of this before the terminal loop starts playing like a song you can’t get out of your head.  I’m so desperate I start singing the entire theme song of the Brady Bunch.  I move straight to the opening song of the Big Bang Theory.  

By the time I finish  Barry Manilow’s classic tribute to the Big Mac I collapse on the couch in exhaustion.  I’m fucked.

Today I took the card to work.  Waiting for a lull in the insanity, I casually hand it to my boss with a big smile and say “I want you to see this card I got in the mail,”  Just like I’m telling her the amazing new way Rich is breathing and how his feet are now a more lovely shade of purple.

She opens it exactly as I did.  I watch her face and get to see exactly what I looked like when I opened it.   The stunned silence, the disbelief, the total examination of what cannot possibly be real.  The shock and awe.     YES!!!  Vindication is MINE!!

Then she went absolute ape shit.  

THAT’s what friends are for.  You have to have a friend  who can help you kill the insanity worm  in your brain before it eats more brain cells than you can afford to loose, then burrows  it’s engorged, satiated self in the exact spot that will result in an aneurism.   An aneurism would not be convenient right now.  I’ve still got shit to do.

Thank you, Ladies and Gentlemen!  Don’t forget to tip your waiters!

"you're such a coward I can't believe they let you wear the uniform"

Four or five times a day a I get a text message requesting an update on Rich.  I’m always warmed by how much he is loved.

I always text back “no change” and then try to shine it up with something reassuring.

It’s a lie that does not even resemble the truth.  It’s not even a sugar-coated truth.

He’s been completely unresponsive since Sunday night.  Since then there has been plenty of change.

As of forty minutes ago…

His eyes are two little pebbles sunk back in gouging sockets.  His right lid only closes halfway, allowing you to see that his once shining eyes are now milky and lifeless.  His hands are hot, his face and neck “normal”, and his feet are ice cold.    He’s getting tylenol suppositories because his body has now learned how to run a fever, and they have to bathe and change everything 2-3 times/day because periodically he oozes fluid through his skin.

His feet are beginning to turn purple.  His left hand and forearm are swelling.   His scrotum is less swollen--now only half the size of a soccer ball, but the excoriation has begun despite  the many measures taken. As I watch him breathe I see that only his left lung expands now.  With my ear against the right side of his chest I cannot feel movement with breath, nor hear any air flow.  The only sound he makes is guttural moans as we near his next dose of medications.  Maximum air flow is 8-10 breaths/minute, slowing to 4/min shortly after meds.

He does not respond to my voice or touch.  He does not squeeze my hand.    Not the slightest twitch.

I come straight from work and sit with him, holding his hand, stroking his brow, giving kisses and whatever words of love flow out of my mouth.  I do this as long as I can bear it--a range between 75 and 113 minutes.

I know it’s time to leave when I begin to feel the sight of him is burning a permanent shadow on my brain like the TV station sign off signals back in the sixties.  (Most of you are too young to remember that).  There’s a reason computers have screen savers.  

Staff is always aware of my presence and always magically appear about fifteen minutes after I settle beside him.  They assure all my questions, which is adequate since I know they don’t have answers.  This is how he is.  They even vocalize that no one understands how he’s still alive a week after he stopped receiving the 70% dextrose that barely prevented hypoglycemia; how he’s survived the absence of antibiotics that were barely daunting the lung infection; how his heart refuses to lapse into tachycardia,  A-fib, V-fib or any other Fib given that he no longer receives his very necessary cardiac meds, combined with the strain it’s under.  How is he continuing to produce lovely yellow, clear urine when he began refusing sips of water days ago (not even mouth swabs) no one knows.  His infected lung has been without vacuuming for a week, yet somehow it continues to barely drain.

When I can no longer bare this I know it’s time to go.  I’ve never enjoyed horror movies, and I flat refused to see “The Last Temptation of Christ” because I’m just not into watching someone I love suffer.  Even though they assure me and I believe in my soul he is not suffering.  It’’s time to go, and I suddenly long for vindication, at the very least permission, to leave.  The best I get is, “you have to do what’s right for you.  You don’t need to see this.”

I leave feeling drained and guilty.  Really guilty.  Not because I’ve left him.  He is SO not alone.  Between this saintly staff and the wonderful energy that flows around him,  I know he is not alone.  At times I feel like an intruding voyeur.  I feel guilty that I am not sharing his work, cannot bare to watch him at his work.  

I drove home to the much needed and welcome Voices in the Van.  

They’re permission and words of consolation get on my nerves in one 4/minute breath, and they quickly change tack.  I do not chauffeur stupid voices.

“Yo, bitch….just one week in pre-paradise and you forget the past three years?!  Give it up!  That’s what I’m talkin” about.”

“You only did ten years Catholic, so no matter how many times you slept on a straight backed chair with your bag as a pillow in ICU waiting rooms; on cranky recliners beside his bed;  on a slab of concrete masquerading as a bed; or didn’t sleep at all (too many times than WE care to count)….you ain’t getting your sorry-ass to sainthood.  So what’s your deal here?”

They went on and on, each in their way.  Replaying the last three years, highlighting the moments when Rich slept and I fought, cleaned, prayed, knitted, cooked,  served, and comforted.

Just sounded like massive rationalizations to me.  

“Even if it were possible for you to climb into that bed, which the swelling  precludes, with your crazy -mis-matched socks, he’s not going to feel a thing and you’re going to be pressed up against the side rail and we all know how many times THAT left a mark.”

“More than three times medical professionals have told you it was time to say good-bye, please sign these papers.  Three times you have found him in a hypoglycemic coma, and more than four times you have barely interceded before same.  No less than seven times you snatched him from harm by jumping ugly on doctors, residents, medications, lab results and even Rich himself.  You’re on a first-name basis with local EMS, WAY too many nurses and assistants, AND certain doctors ooze the correct level of respectful fear in your presence.”

“Seriously, Miss Crazy Person, hospice staff does not keep a score card on you for Rich to deliver at the pearly gates.”

“And  those who are watching and judging just need to get a hobby.”

It seemed a longer drive home than usual.     No more comforting than any previous commute.

I still felt guilty, but determined to work on it.  It’s just stupid to come through the last three years as I did and start feeling guilty now.  Rich wouldn’t want that.  I think that if he knew at any point in the past where he’d be now, he would not even want me to see him.  

“Cut yourself some slack, Baby Girl.”

Hey.  Just trying to keep it real.

"..breathing out, breathing in...."

Friday I talked to the Hospice Doctor.  It’s not at all like talking to doctors who are fighting to heal him and keep him alive.  It was a good talk.  No answers, and I didn’t expect any, but she did “suggest” that maybe it was time to give Rich some Quiet and Privacy.  What human being doesn’t need THAT from time to time.  So I went home.

Saturday he turned down the road she said was soon coming.   

Early afternoon a very nice VNS nurse came in and offered to give him a massage--just hands and feet.  How lovely.  I left the two of them alone with soft spa music playing and took a walk.  I returned in what I considered the adequate amount of time for the massage.  She was sitting in a chair at the foot of his bed.   We talked about how lovely the garden view was just outside his french doors.  She told me the strangest thing had happened  Through the entire massage, all she could think of was faeries.  It seemed important for her to explain that she’s “NOT a faerie person.”  Equally important for her to tell me how strong the thoughts and images of faeries were as she massaged his hands and feet.  She seemed almost unsettled by the experience.

I smiled.  And explained that our home, especially our bedroom and garden are full of faeries.  Everyone assumes that it is my collection, but the faeries are all Rich’s.  We both believe in them, Rich collects them.  She told me she had goosebumps.  I smiled.  Was the message for her or for me, or both?  He’s not done touching people.

As the afternoon wore on it was clear he had reached the point in this journey where he had always made me promise I would not allow anyone to see him.  For months he has been adamant that once he reached the point of no longer being able to communicate, no one but me, without exception was allowed to see him.  He made me swear.

Not pleasant or easy but I did it.  You owe me one, Richard.  I’ll find you to collect.

Sunday was possibly the worst day for me in the past three+ years.  The effort it took me to get to a point that I could get myself to his bedside was nearly more than I could bear.  There was a constant flow of tears all morning.  I tried to accomplish something, anything; succeeded at very little.  After the floors were mopped and and some clutter put away, I found I had lost hours wandering from room to room, always starting with a purpose that evaporated once I reached my destination.  Must have wandered miles through this empty house.  Absolutely could not bring myself to walk out into our garden.

Sometime in the afternoon I found myself at his bedside, not clear on how I had gotten there.  He had clearly progressed since the day before.  I held his hand, must have kissed it a hundred times, stopping only when the sobbing overwhelmed me.  There was nothing left to tell him.  We did not waste a single moment of the past three years.  I was just unconsolably, selfishly sad.

I came home and curled up with a book.  A delicious pleasure I have not enjoyed in nearly a year.  It was like he was just away on one of his golf trips--those times when he could be the people person he is and I could be the recluse I am.

Then I went to bed for the first time in two weeks (the couch needed a break).  I slept without listening for my phone.  

When I woke up this morning things seemed different.  I felt clear. I was ME again.  Brand new thoughts settled upon me like butterflies, and I was reminded of what I’ve always believed.  

I remembered why I’m not a “good Christian”.  “Devout Christians” just confuse me.  Everything I’ve witnessed from them on the subject of death and dying seems to run counter to everything they claim to believe in.    To think that when none of US are with him, that Richard is alone….well that just makes my head hurt.  To view this journey as a sadness, saddens me.  People get happier when someone boards a cruise ship than when they start down the path to Bliss.  I have never understood how one can claim Faith and view death as an end.  

I realized I have spent the past few weeks trying to perform the role that I feel constantly is expected of me.  I have focused on Richard, but in these past few weeks I have spent too much time and energy focusing on the grief of others and the comfort I should give them. 

So here it is.  I’m happy.  I’m happy that Richard has walked this path with such amazing grace, dignity and strength.  I’m happy he opened up and embraced this journey the way he did.  I’m happy for all the lives he touched and the joy he felt in that.  I’m happy he struggled through the darkest moments in the Pit of Despair, triumphed,  and not once complained, whined, or questioned.  I’m happy for every single moment I was allowed to share of it.  All of it.  I am happy that his suffering and struggling is over.  

Now he is moving down another  birth canal.   No one can say when or how long before a child leaves it’s mother’s body and takes it’s first breath.  It is a miracle that happens in it’s own time.  Richard is not dying.  He is giving birth to his soul.    

I sit at his bedside this afternoon.  So much of him is gone from me; so much of him never can be.  I feel peaceful.  His body now looks foreign to me.  Swollen in some places, sunken in others; his complexion still rosy.  I hold his lifeless hand.  I talk to him without sadness about our future--his and mine in different places.  His breaths are now four per minute.  

I will miss him.  I will go through the agonizing, joyous  pangs of postpartum.  I will grieve the absence of his touch, his smile, his tenderness, his crazy, funny ways, until the memory of those things weave their way back into my memory.

I don’t feel that he’s leaving me.  He’s just going somewhere else, where only my physical boundaries will keep us apart.   

When you love someone, “There’s No Such Place as Far Away.”