December 14, 2015: The inventory of the sick

Journal entry by Felicia Friesema

 

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We made it home yesterday afternoon around 1:30pm.

Before I get into the weeds, I wanted to take a moment to worship the doctors and nurses of UCLA, especially those in the neurology unit.  I remember looking into the bloodshot eyes of Dr. Yevgeniy Freyvert, one of our neurosurgeons, on the morning after Steve’s ETV and realizing that he probably hadn’t slept a wink in over 24 hours.  He came to us that last day without his voice, but still reassuring and full of compassion, hoarsely whispering about how well the ETV went.  I told him that I hoped he’d get some rest soon and he smirked wryly.  “There is still more to do.”

Our attending doctor and Steve’s primary surgeon, Dr. Marvin Bergsneider, is equal parts comfort, skill, and compassionate dedication.  He came to us personally when he could and was a beacon of relief and reassurance in the face of our worst nightmares.  Seeing him brought a smile to my face and I’m sure he thought I was a little nutty for doing so.  He was our messenger, and people generally treat messengers like they are less than human.  We knew that for good or ill, he would understand our situation better than anyone.  And he held nothing back.

Our nurses, our care attendants, our food delivery and cleaning techs — everyone was to their bones a professional caregiver.  No task was too menial.  No question went unanswered.  No comfort was withheld.  I will forever be indebted to them for serving so selflessly and with the highest attention to science and skill.  And to everyone that funded the neurology unit, a million times thank you thank you thank you for your generous donations.  You had no idea who you would be helping when you made your gift.  I hope I’m not the only recipient of your generosity who has said with all her heart how much she appreciates you.

I also want want to thank my parents.  They had one of the most difficult tasks — attending to our home and pets all while trying to help their eldest daughter struggle through one of the most difficult trials of her life.  I came home to clean fluffy pillows for Steve and a goofy holiday sweater for me.  Both provided smiles and comfort.  Also, if you know my dad, you know he doesn’t cry.  Not easily.  Not lightly.  It’s not because he doesn’t feel sadness.  Stoics like him are deep wells of feeling and love, and that is my father to his core. This ordeal broke the dam in him and it pained me that he too was suffering right along with us.  For his and my mother’s courage and strength and vulnerability, I have no adequate words of appreciation.  They continue to shepherd me through life with grace and grit.

So.  We’re home.

The dogs were cautiously jubilant.  I think they pick up on so much more than most people realize.  They swarmed Steve as usual, but they demurred quickly when they realized all was not quite well.  They curled up in his lap quietly.  All except Glory.  Glory is especially attached to Steve (she is sleeping next to him right now) and is still young.  She didn’t understand why I was trying to hold her back from him and whined and struggled in my arms.  She hasn’t really calmed down until now, when I finally let her be near him while he slept.

UCLA provided us with a walker.  Today we finish installing handrails in the shower and getting the other bits of inventory we need for the coming days.  I need a complicated pillbox to dispense his myriad medications and I’ll be working on a chart to follow his pain management.  We have wound care supplies, so there’s that.  But we will probably need all the tools that go with performing basic hygiene in bed.  I meant to buy another set of bed sheets to help with easy change outs before we left for the hospital but time ran out.  An extra cane and a shower chair are being dropped by today and I’m getting help with a grocery list.

Then there is the people inventory, or human capital as my HR friends like to say.  PT and hospice will be the first calls.  Then I have to line up Steve’s various appointments for the week.  One of them will be follow up back at UCLA — he won’t like that much as the drive is really draining.  I’m making a formal list of people who are nearby and have offered various services.  The list of folks who Steve is comfortable with helping him handle personal matters is short so we may be relying on a daycare attendant for a while.  The service that handles disability at his work requires a mountain of paperwork to be delivered yesterday, so I’ll be diving into that today as well.  Along with a mountain of bills.

Here’s a funny thing.  We had three medical bills waiting for us when we got home.  They couldn’t get us our own room for the first 36 hours at the hospital but they had our invoices tidily handled and delivered before we even stepped through our front door.  I’m actually happy to pay them.  And I realize that the complications involved in hospital logistics and billing are vastly different.  But it did make me chuckle under my breath.

This is all the drudgery of being sick.  I’d love nothing more than to spend my every waking moment attending to Steve’s needs, stroking his hair, rubbing his back, and making him comfortable.  But in order to do all that, I need tools and professionals and appointments and money.  And they all need to be organized and efficient and ready at a moments notice.  I have resources.  After yesterday’s emotional purge, I was able to focus and get things moving.  Today will be hard.  A combination of diving into details and leaving an ear and eye free for Steve when he needs me.  When he is awake, he is my only concern.

Steve wanted to talk last night, but he was exhausted and had trouble connecting the dots.  He did manage to share a few feelings with me.

He is sad that he probably won’t make it to spring training next year or see another Dodger game.  He so wanted to hear Vin’s last year.  And he loved going to spring training with Larry every year.  It’s been a 20+ year tradition for them.

I asked him if he was scared of dying.  “No,” he said quietly.  “Relieved.”  Which tells me so much about how exhausted he is on every level.  He’s not in any pain.  But he is utterly depleted.  My sweet husband, would that I could take this burden from you.

He’s worried about me being able to stay in the house after he’s gone.  We could manage it with both our incomes before, but he was afraid I’d lose our recently christened Blue Gate Farm.  I told him not to worry.  Things would work out.  With careful management, I should be fine.  He visibly relaxed.

He makes a lot of references to time, even if they don’t fit the context of what he’s trying to say.  My cell phone became “hours” and the kitchen became “clock”.  He’s so keenly aware of the ticking of time and struggles to stay awake even when he is nodding off in his chair.  He’s fighting for moments.  With me.  With the dogs.  He’s trying so hard to be present.

Earlier this morning, I swept through my Facebook newsfeed and caught up on everyone’s pictures and posts, almost all of which are about the holidays, either the end of Chanukah or the start of all the Christmas parties at offices, restaurants, and the homes of friends and family.  And instead of wallowing in my own lack of festivity or feeling left out, I found myself talking to the screen and quietly cheering everyone on.  “Yes!  Live!  Live, damn it!  Live and celebrate and cherish and love and LIVE!”  One of the reasons Steve and I can go down this terrible road together full of love and devotion is that we LIVED.  We soaked up opportunities and cherished our fun and laughter and never shirked away from a chance to just be together, quietly or otherwise.  This will sound grim — Living now, fully and completely, is how you stock the bank account for when horror visits your door.  As my mother once quipped, “None of us are getting out of here alive.”

So yes, live live LIVE.  If you get nothing else from this entire tragedy, let the one thing be that you LIVE.

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