This past Monday night, I made myself a cup of herbal tea as I always do, adding a scoop of collagen powder for good measure (this will likely make perfect sense to a few people and strike others as bizarre, but I won’t get into it now). It’s a nightly routine, and I mostly do it automatically. But last Monday night it was simply heavenly and I felt so deeply grateful for this daily treat.
By way of background information, I ought to mention that my mom was diagnosed with ALS (also known as MND and Lou Gherig’s Disease) in August of 2016. Her initial symptoms were a very slight slurring of speech that only a few of us could hear but quickly progressed into difficulty swallowing. It took almost a year to get to the bottom of what was causing her troubles, and I then spent the hottest weeks of the summer grappling with her diagnosis in Antalya while she mulled it all over in NYC.
My mother, for those of you who do not know her, is a feisty lady, and she has dealt with all of the challenges thrown at her with great aplomb. When swallowing became a tiring and scary prospect, she consented to have a feeding tube put in and has adapted marvellously to her new way of eating. She still cooks, of course. Although she now eats pretty much nothing at all by mouth, she spotted three overripe avocados on my counter this evening and whipped up a quick guacamole so they would not go to waste.
So when she got into a real flap on Friday morning because she couldn’t breathe properly, I was alarmed. And when it happened again in the afternoon, I declared that it was time to go to the hospital. Ali and I spoke on the phone briefly and decided that I’d better take her to the Akdeniz University Hospital because we had heard that there were doctors there dealing with ALS, and the university hospital had a reputation for being a sensible place where the doctors are not in the least profit driven, which cannot be said for some of the private hospitals.
We went in to the emergency room. “Can’t breathe easily” is a vague complaint, but they were quick to bring my mother in and set her up with a nebuliser, and before long she was breathing easily and seemed more relaxed. They took some blood and did a chest X-ray. And we sat around a lot – I’ve been to the ER with my a few times now, and there is invariably plenty of waiting. It’s like being on a plane – you just have to let go of the time and let it pass unobserved or you get edgy and despair tugs at you.
A neurologist came to see my mom and encouraged us to visit the neurology clinic the following week, because a professor there was doing work with ALS patients. “They’ll admit her tonight because they found pneumonia,” he said, conversationally, “so she may still be here on Monday.”
“They found pneumonia??” I echoed, aghast. Pneumonia is no walk in the park for anyone, particularly once you get past a certain age, but it’s especially bad news for people like my mom who can’t cough without assistance from a machine, or spit stuff out. It can be a serious danger, so I found myself suddenly grateful to be in the hospital.
My mom was admitted that night and moved into a room with a diabetic woman who was apparently completely chock full of cortisol and no one could figure out why. I went home to get some things for us both and tell Ali and the boys the latest.
When I got back, my mom was writhing in pain. “The IV needle hurts,” she wrote on her board. I went to find the nurse and told her what my mother had said and she tutted sympathetically. “It’s the medicine – it burns the veins.”
“Wow,” I thought, “that really sucks,” and went to break the news to my mom.
So for the next few days we found ourselves caught up in the routines of the hospital ward. Lights on at 6, blood pressure, temperature, antibiotics. Breakfast cart at 8:30, but no food for my mom. When they heard she had a feeding tube they were happy to leave her feeeding to me. I got food though, from the Companions food cart.
More antibiotics at 12 – the burning one. Lunch at 1:30. And a blood thinner at 2 and more antibiotics at 6 and more fire water at midnight, with the dinner cart in between. Sometimes there were other, weird things like the time that they got my mom out of bed at 4:30 a.m. to weigh her. And the days passed surprisingly quickly with all of these regular occurrences to mark the time.
Her room was almost at the end of the hall, across from a bright lounge area. People drifted in to the lounge to compare notes, commiserate, or sometimes to just nap. I discovered that my mother’s roommate had been there for three weeks, while the young man from down the hall had been looking after his diabetic mother there for two weeks; her foot was infected. The day we left, he told me strickenly in the elevator that they were going to amputate it in a week’s time.
On Monday morning, a head nurse marched in folllowed by an orderly pushing a cart piled high with sheets. “Let’s clear that window sill,” she said briskly, pointing at the thermoses and feeding paraphenelia I had lined up there, “and put your bag in the cupboard.We’ll change the sheets. Can you untie that plastic bag from the bed? That’s not allowed. Doctor visits today – the room should look it’s best.” So I hid everything away, and they changed the sheet while my mom was in the bathroom. When she got out she raised her eyebrows at the lack of plastic bag for her tissues – “it’s forbidden,” I explained. She shrugged. Later that day she spat into a tissue and held it aloft for a moment before defiantly throwing it on the floor. We laughed behind the curtain dividing the room, feeling complicit. Then I told my mom that in Hong Kong when you blow your nose in a tissue it’s called “making won ton” and we laughed over that. “Give your won ton to me,” I said.
The nurses had alluded to the fact that my mom would be discharged on Monday if she improved when they changed shifts, and a doctor breezed in and asked for a blood test and phlegm sample. Once these were tested, my mom had a green light to leave.
Of course, leaving a hospital is never especially straightforward, so it took us all afternoon to manage it and we didn’t get back home until 7, after a stop at the pharmacy to buy her antibiotics. I made a quick dinner for us all and my mom went to bed and the kids got ready to go to sleep and I put the kettle on to make my customary cup of tea.
What a joy to be standing in front of my own stove, waiting for the water to boil, and to pour the water over the tea and smell the scent of it. What a pleasure to walk down the hall to my room and settle into bed – my own bed, not a fold out chair, in pajamas not my days-old clothes. Oh and what a relaxing and lovely feeling to take a sip of tea and reach for my book!
(My mom is on the mend, though the antibiotics don’t agree with her and she’s still kind of congested. It is pneumonia, after all…)