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Thursday, 8 February 2024

Live(r) Your Life

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Site logo image Deb Zuroski posted: " I've spent so much time in hospitals that I have that instant clarity of meeting an old acquaintance and falling into conversation as though you've never been apart. No matter which hospital you are in, the smell, the sounds, the directions (follow the a" The New Normal Read on blog or Reader

Live(r) Your Life

Deb Zuroski

February 8

I've spent so much time in hospitals that I have that instant clarity of meeting an old acquaintance and falling into conversation as though you've never been apart. No matter which hospital you are in, the smell, the sounds, the directions (follow the arrows for elevator E, bring your ticket for validation, show your ID to enter the building) are basically universal. 

And yet, despite that deep familiarity, there are things I always forget – the way patients wait for hours, the texture of the food, the unique kindnesses of the support staff, the emotions that fill the air, leaking from various open patient doorways – grief, panic, fear, acceptance, relief. 

Roomie 1, the OG, had already been in the hospital for a week when I arrived. She was angry, her mood emanating from her like a toxic gas. I celebrated her return home for her benefit and mine. #2 roomie was very elderly, stuffed into my room for the night for observation. She'd fallen out of a car and was pretty banged up. Roomie 2 was beloved by her family. She had so many phone calls and visitors that I wanted to remind them that she was supposed to be resting – and so was I. But she wasn't even there 24 hours so I left my bitchy comments on my side of the floor.

My third roommate, let's call her Marietta because that couldn't be farther from her real name, arrived from another high monitor unit in the hospital. She was very sick. The hour was late. Her care team was with her into the early hours of the next morning. There's no privacy in hospitals so, since I couldn't sleep, I listened to the conversations. The staff talked to her, asked her questions. She frequently didn't know what was going on, wasn't aware of some of the care decisions that had been made. 

At some point, I was able to put together enough pieces to realize that she'd been unconscious, unable to consent to some of the care she received. We were in a high-monitor surgical oncology unit so it's not that surprising. Things come up during surgery. My care team and I went through the major decision forks that could appear so that they would know what I wanted before the anesthesia was administered but that isn't always an option. 

Eventually, her care team left for a few hours but the doctors round early. They arrived to talk with her before the sun was above the horizon. The discussion was one I've experienced. Hospital familiarity can be reassuring – sounds and codes don't make me anxious but there's a certain food served in the cafeteria that I can't smell without feeling a cold sweat on my forehead. 

Anyway, she asked when she'd be shut of all the bags she was wearing. If you don't know anything about these, just google 'ostomy bag' and you'll have a general picture. Since Ken had colon cancer, I know quite a bit about ostomy bags because he was supposed to get at least one. While I sat in my curtained-off alcove, the doctors explained that she was entering palliative care. 

Have you any idea what it feels like to be sitting on your uncomfortable hospital bed, no headphones, unable to easily move around because you have four brand new and very sore holes in your abdomen, and nowhere else to go anyway, listening to a young doctor tell the unseen woman beside you that she is dying and there is nothing they can do to stop it? He kept saying "let's focus on making the time you have left as pleasant as possible." I know he meant well. I do. I had forgotten, perhaps on purpose, that this is another part of being in hospitals. 

Ken's care team would use phrasing like "keep him comfortable" and "most potential for extending his awareness." I wanted to go through the curtain and ask her if she understood what they were saying, though I could hear her tears. I also wanted with an all-consuming passion to be ANYWHERE ELSE. There are no exits from a locked unit but if I'd been allowed to walk unaided, I might have become a human ISS, traveling the unit hallways for the foreseeable future. 

We weren't friendly, exactly. It's hard to become even acquainted with one person (me) constantly resisting the connections that the other (her) continues to offer. We talked a little bit, occasionally. Each time I struggled with a task, she'd make strange offers of assistance – and what exactly are you going to do to help me, occupant 2 of Room 899B? Your care team won't allow you out of bed so quit asking me if I need help. 

Because I can't help you. I can't.

I took many walks with a walker or when I could manage it, just holding my IV octopus – I had five active lines. Basically I was constantly tangled in or tangling things, some of which hurt when you tug on them. There was a young man, later 20s probably, taking the same walks I did, though he had a single room and wasn't guilt-walking the corridor to hide from his terminal roommate. Like I said, it's a surgical oncology unit so unlikely he was there to get a bunion removed. His gait was better than mine. He'd been walking longer. We'd pass each other on the route. There was little maneuvering room so occasional clipped wheels were common but we never spoke. 

Eventually, I'd have to return to my room. There's no place else to go – bed, sitting upright, or chair, also sitting very upright. Marietta would launch a possible conversation grenade at me and I'd answer briefly before muttering about a nap or a sponge bath. In the early morning hours of my last day, we were both propped up in our spaces as the hospital began to come awake. "Can I say something?" she asked through the thin barriers of our privacy curtains. 

"Sure," I said, sure that she was going to comment on her life or my evasiveness.

"Your daughter …." She paused a moment. "Well, she's beautiful but that's not even what I want to say." I heard her fidgeting. "You're lucky. She's wonderful. And I can tell that she loves you very much." 

God help me. I wanted to cry, was determined not to cry, didn't cry. I am so very lucky. She's right and I know it. My children are amazing. Mostly, I asked them to stay away from the unit. We spent so many months, painful, traumatic months in hospital rooms. They did not need to see me beside a woman who is the living embodiment of their dad's illness and future death. 

I thanked her and was quiet again. There aren't good words to tell a dying woman that my blessing isn't her curse. There are almost no good words to say to someone who is dying. When I left later that day, I walked around the curtain to meet her. She's older than I thought, looks vaguely like a well-known comedian. Her hair, short like mine, is a vibrant color, startlingly against the hospital bed. 

When I spoke, she said, "Oh, you're the woman behind the curtain." 

I nodded and held up two unopened water bottles I had left. "You want my extra water?" I asked her. 

She smiled at me, her eyes tearing up again. "Yes, thank you," she said. "Go. Live a joyful life." Marietta waved her arm above her head like she was cracking a stage coach whip before a team of horses. "Go now. Live."

Much love. 

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