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Monthly Archives: November 2013

During the time after Simone’s diagnosis, everything felt heightened – including my gratitude.

Simone was readmitted to the hospital on a Wednesday – the day when she thought her chemotherapy treatment would begin, but which turned out to be the day she learned she was beyond treatment.  I planned once again to spend the nights at the hospital with Lauren and Simone so Lauren could sleep.

For some reason, I thought I’d have trouble making my way up to the hospital alone that first night back.  OHSU is up on The Hill, as we say in Portland – and is a world unto itself.  It’s easy to get lost if you are not familiar with it.

Less than a week before, I’d come to the hospital three days in a row, but now I worried maybe I’d been too discombobulated.  And hadn’t my dad driven me that one time, so had I paid enough attention?  And it was dark this time – almost 11:00 pm – where every time before I’d come when it’d been light.  So I was anxious.

As it turned out, I made my way to the hospital and parking garage for Simone’s building easily.  I got in the elevator.  The doors closed, but then the elevator sat there, even after I pressed the button for the floor I wanted.  I pushed the button to open the doors; I pushed the button to close the doors.  I pressed the floor number again.  Again it sat there.  Again, I pushed the button to open the doors.  I got out, thinking it wasn’t working.  I let the doors close and pressed the Up button, but the doors to the elevator I’d just been in were the only ones that opened.  I got in, did my whole routine again – and finally saw the sign that indicated the elevator didn’t operate from the parking garage after 9:00 pm.  I was going to have to find another way into the hospital building.

I called Garth and asked him to keep me company while I walked around Kohler Pavilion (the tower building where Simone and Lauren were staying) and looked for another way in.  It started to rain.  After a few minutes, I rounded a corner and there was an obvious entrance: 3-stories-high glass windows and automatic glass doors that, combined, stretched for tens of yards providing a view into a foyer and, beyond it, a bank of elevators.  Except the automatic doors wouldn’t automatically open, and there was no one in sight in the foyer to whom I could even pantomime my frustration.  Lucky Garth got to hear about it all.  I kept walking.

Ahead, emerging as if from a secret compartment in the side of the outer wall, two white-haired people exited the building.

I ran to catch them, saying, Excuse me, excuse me.  They turned.  My niece is on Floor 14 and I need to get up there but I can’t get in.  The elevator for the parking garage doesn’t work.  

They said, Y, it’s after 9:00.  Floor 14?  I’m so sorry.

Then the woman – who was petite and 80 years old if she was a day – said, You didn’t see us.  I was confused and asked what she meant.  She repeated, You didn’t see us.  Then she and the man conferred, and I understood they intended to use their pass keys to help me get in.  It was so dark and wet, and the building had started to seem so impenetrable that this kindness struck me the way it would have if someone had offered to smuggle me out of Russia during the pogroms.

We found a loading dock further down the side of the building and the three of us strode up a long cement ramp.  The man took out his key and let me in.  Just head down this corridor, take a left and you’ll see an elevator.  

They said, Take care, and good luck.  The woman said, Dinner here is expensive.  Lunch here is expensive.  But if you’re like me, you don’t mind having breakfast for lunch and dinner.  And breakfast here is cheaper.

If I believed in angels, I would tell you here that I’d been sent a couple of them.  I don’t happen to believe in angels in the strictest sense.  But those people, heading home very late after what was likely a long day – well, they could have just pointed me in the right direction.  The Kohler Pavilion surely had another entrance somewhere that would have admitted me.  They could have said, Go that way, and left me to it.  But they didn’t.  They helped me – an act so simple it turned my anxiety and frustration into thankfulness – which in turn made it possible for me to find the resolve I needed to show up for the unfolding night.

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What is it about a crisis – especially a medical crisis – that makes not eating seem like a good idea?

There were some practical reasons why eating was more difficult when Simone was in the hospital. If I wanted more than the snacks I’d brought – bananas and Cliff bars grabbed on the way out of the house, stuffed into my bag with the knitting I thought I might pick up (never did) and the books I thought I might read (didn’t) – it meant a trip to the hospital cafeteria. This involved taking the elevator down to Floor 9, walking along several connected hallways, and then taking another elevator to Floor 3. It also meant being around people I didn’t know, lucky people, who looked as if they had showered recently and who weren’t watching the end of a dear life that had barely begun. It was hard to leave the hospital room and swim through all of that merely for food, which seemed such a trivial pursuit in the face of what Simone was struggling with.

But in addition to food acquisition being inconvenient, I also didn’t eat because – well, I’m not sure. 1) Maybe it was my version of bargaining: If I eat only enough to keep going, maybe Simone will come out of this all right. 2) Maybe survivor’s guilt: How can I eat and enjoy it when she cannot eat or enjoy it? (Joyce Carol Oates wrote about how vulgar it felt to her to take any sort of pleasure in life after her husband passed away suddenly.) 3) Maybe it was simply that the world was turned on its head and this was a ready manifestation of how much life had shifted. No longer was food a potential pleasure but only an easily-overlooked “fuel for the fire.” Whatever the reason, there seemed to be intention behind depriving myself of food.

Soto Zen Buddhists recite a mealtime verse that exhorts one to “eat lest we grow lean and die.” I felt a particular affinity with the position of food implied in this verse. Namely, that food was unimportant when held up next to this tragedy – just as petty grievances and misunderstandings became unimportant – and so eating became something I had to remind myself to do so I would continue to be useful, so I would not become one more thing to worry about.

Experiencing self-inflicted food restriction, I can’t help but think of anorexia nervosa. Those suffering from anorexia often seek to exert some control over their lives in the most basic of ways, by controlling what they eat and don’t eat. I’ve never been in danger of developing this particular disorder, but I now appreciate more deeply why someone might feel driven to act out their helplessness by finding something they can control – like what we choose to put in our bodies.

I feel cliched pointing it out, but when we experience the ultimate helplessness of death, how could we not search – at least for awhile – for something that would yield to our will and help us remember that we do have some power? Perhaps not eating is as simple and as complicated as this, an attempt to feel some small sense of agency; maybe this delusion of personal power is the very thing that helps us continue into the next moment.

I seem interested only in speaking with people I believe can talk about loss in a particular way.  Artist Holly Swan wrote: “When you experience a loss, time seems to stop.  You are left with a hole.  But what if that hole is a sacred space you hold in your heart?”  To me, there is no “what if?”  Of course that hole is a sacred space.

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I am interested in talking about that hole and how it is we carry it as we move through life.  One moment, we experience it as an ache; in another, it is an abyss; in another, a weight and a darkness.  Then there are moments when its presence is momentarily outside of our awareness.

Being with someone who is dying is a meditation.  Or maybe better put, it is an invitation to meditate (which Jon Kabat-Zinn defines as “attention in the moment without judgment”).  Simone was in the hospital at two separate times over the course of two-and-a-half weeks: once for six days when she was first diagnosed, and the next for three full days and nights when it was clear that chemo wouldn’t buy her any more time.  That first stint, I was in the hospital room with Simone and Lauren two nights and three days, and the second time I stayed three nights and three days.

I saw my main job as being another maternal presence for Simone’s nights while Lauren slept a couple feet away on the hospital cot.  My hope was that Lauren would be able to ease into sleep knowing someone equally watchful was awake, attending to her gravely ill child while she slept.  There were moments, awake at night, when my mind ran ahead.  Perhaps I’d think to the up-coming meeting with the oncologist, or perhaps I’d anticipate the next moment when Simone would awaken, and I’d worry that she would need something I couldn’t offer.  (After all, what could I offer?  I wasn’t her mom and I wasn’t a miracle-worker.)

Thinking ahead like this, I felt a rising panic every time.  In the future, another glass waited to shatter, to send its sharp, hard pieces through the air, to pierce us on the fragile platform we’d made after the last bit of shattering news. How could I prepare in any way for the next wound?  How could I hope to see which direction it was coming from to protect us from it?

Thinking like this for any length of time would clearly render me useless before long.  At some point, thankfully, I’d remember to tell myself, “Just get through this moment.  How is it right now?  You can’t know about the next one; stay in this one.”

Writing about being with someone who is dying – about being with her, her mother and her grandparents, with her boyfriend, uncles and her cousins – is somewhat fraught.  I need to reassure my reader (that is, I need to reassure you for myself, not necessarily for you) that I know the heroes of this story are Simone and her mom, Lauren.  I do not mean or intend to appropriate that.  I need to say explicitly that while I want to write about what I saw and thought and experienced, I in no way mean to suggest – ever – that the role I played was super-hard.  My job in this story was a cakewalk compared to my sister-in-law, Lauren’s.  All had to do was support the two of them as they made some very hard decisions.  I didn’t have to make any of those decisions myself, and so I was free of second-guessing them later.

That’s the “I” who is writing this.  She is the “I” who had the luxury of being one removed.