December 26, 2015: Post Christmas Recap

Post Christmas Recap

Journal entry by Felicia Friesema



Christmas loomed like this big gorilla.  Steve picked up on it, too.  So much emotion is invested in the dissemination of joy during this time of year that if you’re not on board, something must be wrong with you.  Granted, our community doesn’t quite roll that way, but the wider mainstream message isn’t very accommodating for those who are suffering, alone, sick, or depressed.  It puts some pressure on the unfestive to buck up, get over it, and play along.  We wondered if that pressure would hit us.  It did in some ways, but we came through the holiday largely unscathed.  And more often than not, we benefited greatly from the love and support of good friends who made sure we were fed, blanketed, and properly stocked with Christmas tamales.

Steve’s long term memories remain intact so I make a habit of bringing up a few things from the past for him to recall.  It makes him feel less frustrated knowing that there is a part of his brain that still works the way it should.  While his word use is generally solid (he can form some complete sentences), he still slips into something closer to his post-surgery state.  His word replacement connects to actual meaning less and less.  On Christmas day I couldn’t keep up and after a few minutes of back and forth he said, “fuck it,” closed his eyes, and sighed.

I asked him not to give up talking.  I know it’s frustrating, even angering, I said.  But never give up talking.  It takes me a while but I can usually help him figure it out.  It is taking longer each day.  Steve’s awareness of time is broken so I don’t know if he notices a shift or a decline in his abilities at all.  From moment to moment though, it doesn’t take much for him to know something is wrong.  During one particularly frustrating session of word finding, he stopped and said the following:

“Honey, honey, honey.  But I know it’s not about honey.”
“I know.  I think I’m honey.” He smiles and nods.
“Honey henge? Honey door? Ugh!”
“Are you comfortable?”
“Yes.  It’s like products of words fly away.”
“I know babe.  But I can help you.”
“It’s right there and then…It’s like the words are…”
“Right in front of you?”
“Yes! So close! And then they leave.  Moments slip.”
“So you called me in here.  Do you need anything?”
“Are you thirsty?”
“No, it’s not that.  Honey?”
“No I think it’s honey.”
“Or something that sounds like honey.  Money?”
“Maybe. Fuck it.”
This is fairly typical of our conversations the past few days.  He’ll also repeat things I’ve said in a different incorrect way looking to find a pathway to the right sentence.  He is trying so hard to find clarity and meaning.  There was some improvement after the ETV, but not enough that I would consider it a roaring success.  It probably saved his life.  So with that as the benchmark of success, we can call it a win.  But the promise of memory improvement is pretty much dashed.  From my vantage point in despair, the damage feels irreversible.

Steve is still aware of the world around him, of his cancer, and of the effect this is having on me and us.  I was walking toward him from the kitchen with a glass in hand and he asked me point blank, “are you ok?”  I wasn’t.  I’m not.  There are days when my ability to focus on him is nearly superhuman and I feel like the Platonic ideal of a caregiver.  But many days that dull drumbeat of sadness and loss becomes a thunderstorm and the pain leaks out.  He must have seen an expression on my face (I have NO poker face at all).  So I told him no, I’m not ok, and that I was sad a lot of the time because I love him and I’d love nothing more than to pack up the car and him and go to Los Olivos for the weekend.

“Or maybe Hawaii,” he added.

This time last year we were enjoying a lovely little cottage on Hawaii’s southern shore near a black sand beach.  It was tiny and inexpensive and it had a little kitchen.  I fed us island meals full of papaya, sweet potato, rice (always rice), taro, rambutan, and whatever else I had picked up from the Hilo Farmers Market on the way there.  There was no cell signal, no tv.  Just us, a little cinder smoke from a bubbling lava vent a couple miles away, millions of coqui frogs, giant coconut trees, and starlight so bright it cast faded shadows behind us.  We drove all over the island that trip, logging in over 1500 miles on the odometer.  We turned onto back roads, meandered through jungles and lava field deserts.  Mai tais and hot tubs are nice, but give us open road and unseen things and off we go, giggling like kids.  Hawaii was our honeymoon.  Our first Christmas just for us.  A great beginning.

“Hawaii would be nice,” I said.  “Perfect, even.”

He smiled and we spent some time remembering that trip.  We had little fantasies about buying some land in Waimea and raising some small livestock.  I said sheep or goats, he was more for chickens.  Sheep don’t lay eggs, he said.  True enough.  But I’m a big fan of sheep’s milk.  An argument for another time.

Our second Christmas as a married couple was not as humid or warm or full of new things to see, but it was saturated with love from so many different places.

“Do you want to tell folks anything for the holiday?”
“I’ll type it for you.”

He paused thoughtfully.

“Fuck it.”

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