Star Day
At the start of 2024 I bought a Moleskine daily journal and decided to end each day recording the things I had done. It wasn’t meant to be a top secret diary of my thoughts and feelings, it was just a place to keep track of how I filled my days, where I went, who I met for coffee, what the weather was like, any big items in the news, and what country I was in that day.
In 2023, coming out of years of closed borders and disrupted plans due to the Covid pandemic, I had spent most of the year feeling lost in time and place. For 2024 I was grateful to have a device to end each day saying, for example, “Today is Friday March 8. I flew to Singapore to see Taylor Swift with Michael, Benjamin, Heidi, and Clay. I remembered our friend Gerb’s son Herbie by making friendship bracelets with his name on it. We ate at Nando’s.”
Of course not every day in 2024 involved traveling or family visiting from America, but quite a few of them did. It was helpful to have this small, grounding ritual to end each day. On really good days I’d put a star by the date as a way to give a little extra recognition of something I wanted to remember. Like say going to Singapore to see Taylor Swift with my family. Later when I’d want to write more about something I’d done, I could pull out the journal to confirm the date or the name of the place I’d been.
I enjoyed this low-tech way of recording my day so much that toward the end of 2024 I bought a new Moleskine journal to continue the habit into 2025. Of course, the last week of 2024 brought stunning change to our family when Michael was diagnosed with Mixed-Phenotype Acute Leukemia and we began this horrible journey. I remember sitting on my bed on New Year’s Eve, writing the final entry for 2024 while Michael was sitting in his hospital bed in the Hematology Ward at Princess Margaret Hospital. 2024 had been an incredible year up until that last week, and suddenly the thought of a daily journal filled with terrible medical updates seemed like the last thing I wanted to create. But the next evening, the first day of 2025, I cracked it open and began writing.
I quickly stopped writing “Hong Kong” as the location because even then I knew there was no way I’d be leaving the country this year. And unlike 2024 with two to three coffee dates a week, there have been only a handful for the entire year. There has been precious little time and far less energy to be social, not to mention the risk of picking up an innocuous (to me) little bug which might severely harm Michael in his immunocompromised state. Instead, my journal this year has generally been a long lament of sorrow, filled mostly with which hospital I visited and whether I remembered to eat breakfast or not.
Nothing about Michael has really changed since the last post. He remains intubated on a respirator, though the sedation is lower and we can interact (thank goodness we’ve been casually practicing our American Sign Language finger alphabet this year). We know a little more about what we are not dealing with (infection), but the scope of what we are dealing with (an immunological response to the bone marrow transplant, wreaking havoc in his pulmonary system, causing potentially irreparable damage) still needs time and treatment to see the extent of what is going on.
Each day that passes brings us closer to the end of 2025, and with it, closer to disaster. Hard won arrangements for Michael’s ability to work from home part-time are set to expire, and the carefully budgeted paid sick leave will end shortly as well. With that will go quite a few other things, including health insurance.
At the most recent meeting with Michael’s transplant team before his lungs stopped working, the doctor was feeling quite optimistic that by the time Chinese New Year rolled around, Michael might be able to begin a tentative trial of returning to the office as long as he continued best practices of avoiding public transit, wearing a mask, and steering clear of anyone who was sick. We tightly held hands at this news, astonished that it looked like we were going to miraculously make it through this, that the ruin we’ve been skirting for so long might finally give us a little breathing room.
Today, as I look at Michael today in the Intensive Care Unit, nowhere close to being able to breathe without a high flow of supplemental oxygen, let alone even sit up in his hospital bed, I feel the panic rise until I’m also short of breath. Is it actually possible that after so much hard work, so much sacrifice, so much careful following of every rule and guideline, we may end this year even worse off than we started?
Yesterday the fatigue of the last few weeks crossed the line into unbearable.
Each day I stand at Michael’s hospital bed twice a day, in the morning for one hour and the evening for up to three. I lean forward just slightly, so Michael can see my face while lying flat on his back. After twenty days of this, my feet, along with my ankles, achilles tendon, calves, knees, and even hips are just angry, screaming in rebellion and begging for help. I promise you I have the most comfortable shoes ever, but standing in one spot, leaning over to see my sweetie for hours is some seriously heavy lifting for any footwear to carry. Also? It’s the very last thing I would ever complain to Michael about, considering the significant discomfort going on in his body.
Yesterday morning from the moment my feet hit the ground I knew it was going to be rough and that I was going to need to just suck it up. And I did, all through the morning visit, which Benjamin joined me for. But coming back in the evening felt like misery. I pulled out my phone to softly play gentle instrumental Christmas music, placing it on Michael’s pillow. I grabbed a book on Advent I’ve been trying to keep up with each day, and prepared to read the December 2nd entry to Michael. I knew in just the first two paragraphs I would never make it through the three hour visit no matter how desperately my sweetheart needed me to be there. I tried not to wince, to not let on how much pain I was feeling because my number one priority right now, especially while he’s intubated, is reducing all of Michael’s worry, fear, and anxiety.
A nurse came in to check a machine and I paused my reading to point out Michael’s swollen hands, which hadn’t looked so puffy that morning. It’s the lack of movement, he said. He is just lying in bed with poor circulation.
“Oh I see,” I replied. And then turning to Michael I said, “Have you been forgetting to go for your morning run each day you are here? The Doctor was pretty clear on that.”
Michael shrugged and the nurse gasped, eyes wide open. “Oh no, he cannot run… not while he’s…” and then gestured at all the machines and wires and tubes. I just laughed and Michael’s shoulders rose up and down as if he was laughing, a smirk forming around the breathing tube. I told the nurse I was just kidding, and reached down to rub the sides of my sore knees. And then: magic. “Can I bring you a chair?” asked the nurse.
When Michael was in the Hematology Ward with three beds to a room, I’d just climb onto his bed to sit with him. In the Transplant Isolation Ward, there was a large chair where I could sit. But in the ICU, there is so much life saving equipment already in the room, and due to Michael’s critical state, they want an open path, the ability to clear the visitors out quickly with no obstacles. They didn’t want chairs in the room. I know because I’d asked. What this nurse was offering me was a huge gift. He even lowered the side gate of Michael’s bed, so I could just lay my arm on the bed itself, lacing my fingers into Michael’s swollen hand. It was amazing.
My whole body rejoiced at this tiny mercy, and my mind followed into a far more relaxed state. I began to read aloud again from the Advent book, but Michael had slipped into a calm and peaceful slumber, so I just closed my own eyes and dozed a bit myself with the gentle Christmas music softly playing. Michael would often startle awake, and each time I’d tell him I was right there, right beside him. He’d squeeze my hand and then off he’d go into sleep once again.
Ultimately I stayed the entire three hour visiting period, just sitting there resting with Michael until they quietly came to tell me the time was up. I made my way home with a smile on my face, which lasted all the way through my nightly ritual of writing in my journal, in bed wearing my Christmas PJ’s. After I wrote all the details from the day, I couldn’t help myself, I added a star up at the top.
Our toes remain pressed right against the edge of catastrophe and ruin. Yet in the midst of the most difficult week of 2025 so far, I had three hours of total peace in my beloved’s presence. That is certainly worth remembering.
More soon.
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