"Wilt u koffie of thee?" Coffee. Always coffee. Koffie is a ballast in Dutch life and it makes my day-to-day life notably more pleasant. It usually comes in somewhat small-but-not espresso-sized tiny cups with a head of foam on it from machines that are neither espresso machines nor plastic Nescafe pod machines either. They grind beans. They pour out foamy coffee. They're fairly ubiquitous, including in my kitchen.

Koffie is served in hard porcelain mugs or clear glasses; you'll only get a koffie in paper if you're carrying it out, and if you're carrying it out, the lid is paper, never plastic or plant-plastic. Coffee is served in cafes, of course, often with a tiny water and a tasty wee cookie, but it is also served the center of the library, in the waiting room of an office space, in the center of the Salvation Army thrift store at a long table with chairs. Often these offers of coffee are free. Sometimes coffee machines in shared spaces have little card readers on them so you can tap your pin before you pull down your €1.50 cup of warm energy. The library coffee starts at €2.

But never have I ever been offered a a cup of hot coffee in a porcelain cup while getting a drip infusion of the life-extending medicine that kills off my B-cells.

And I liked it.

I've been getting infusions—a drip of a cocktail of medications from a bag into my arm to help slow-walk the hyperactive immune response that chomps holes in the protective coating of my spinal cord and brain—every six months since 2019. When I had to make the decision to start the infusions, it, like my initial diagnosis with Multiple Sclerosis, felt devastating. The infusion reduces my immune response, making me more prone to infection. I didn't want any more vigilance or fear in my life at the time. I was the parent of a preschooler and a first grader: aka, the center of the germ-transmitting universe. But I did it anyway, and started rocking a mask at work and on transit before the pandemic even started. And for the last era, this has been my life of caution and regularly scheduled plunges into a pattern of hospitals, chemical-induced hazes, and regularly re-building every six months.

I've written about this experience over the years. I was in the hospital so much I started documenting hospital art.

In the beginning the dose of steroids was so heavy, I was awake for almost two whole days, and it kicked off my tradition of reading an entire novel in the first-infusion-night of insomnia. This time was better, one calm quiet night of light insomnia, just enough to start and finish one novel.

This year's book was Where the Girls Are by Kate Schatz; my night of steroidal attention traveled alongside a teenager sent to a hide-and-then-birth-and-then-give-your-baby-away-and-feel-ashamed-about-it maternity home in the era before abortion was legal in the US. With the moxie one would expect from any main character written by the feminist who writes the Rad Women history book series, this character is allowed to be brave and scared and ultimately make her own terms and small solidarity-laden rebellions from between the pressing layers of shitty options.

I came into my first Netherlands infusion experience slightly nervous but largely hopeful. As I've written about in the previous two posts before this, I've been pleasantly surprised by the healthcare I've received in the Netherlands. The Netherlands has a somewhat bad reputation of it being hard to get healthcare professionals to listen to you, take your pain seriously, and prescribe medication in a timely manner. I have tons of empathy for every single person who hasn't gotten what they need from the gatekeepers.

My experience, showing up with somewhat shocking diagnoses on my medical history chart, is that the huisarts (general practitioner/gatekeeper to the world of specialists that work out of the main hospital in my city) had one chat with me, understood the urgency of starting care with a Neurologist so I could get my next infusion, and released me to the main hospital's care.

Slow & Steady Gets the B-Cells

The chemical that shapes the cadence of my life, the Ocrevus drip infusion, is now the most prescribed treatment in the world used to slow the progression of relapsing-remitting and primary-progressive Multiple Sclerosis. Over the more than half a decade that I have been sitting for infusions, the time-in-chair reduced each time. My first infusion was an epic and exhausting 10-hour first visit, wherein four different nurses stuck me many, many times over the course of two hours just to set the line (goddex bless phlebotomists, who always hit the mark, and whom should train every hospital worker that sets IVs).

But over the last years, the literal speed the of the chemical's drip has accelerated and about a year and a half ago, my US- health insurance refused to pay for the infusion to be delivered at the hospital where my Neurologist practiced. They insisted I receive the infusion at a corporate "outpatient" center in a brown-bricked office suite on the edge of town, involving 0 doctors, nearby emergency care, nor colleagues with medical training for accountability — it was staffed by only one nurse practitioner and a receptionist. To say that I felt insecure about what could happen there is an understatement and speed wise, the experience was very wham-bam-thank-you-maam. I was in by noon and out by four, weary and drugged, sitting in my car until the liquid sleeping meds used to dull my allergic reaction to the meds wore off. The aggressive capitalism of US medicine ended with a quickie in the strip mall, and not one single US resident will be surprised by this. But the Dutch hospital staff recoiled when I described it.

"Oh yes…." muttered the Nurse Practitioner who came down to the infusion room to approve the start of my infusion. "You had it last time in… that…. winkel (store)."

So, my infusion this month was longer than my infusion over the last couple of years. It happened in a group infusion room wherein 1-2 other people came in and out of the other chairs for (presumably) other treatments, quietly waving or nodding at me as they settled in, then made their way out a couple hours later. As I wrote about last month, this infusion altered the every-six-month cycle because here in the Netherlands they used SCIENCE to determine timing, drawing my blood monthly to see if my B-cells were growing back. Then, only when evidence of cell-regrowth was present, did I get scheduled for the infusion. Three months. I got three extra months of my life moving about the world unbothered by the drain of cell die off and steroids and IVs.

The slower pace of the drip seems to have corresponded with little to no allergic reaction from the medication. Previously, I would get a dull tingle that grew to an agitated itch in the back of my tongue and throat, eventually making me panic that I was slowly less able to breathe. I mean, think about it—a chemical is entering the body to kill of cells that are critical to fighting for your life. I'm so glad they generally know to resist! It happened like clockwork about an hour into the drip. And at this point, in the beginning, they would re-dose me with a second plunge of steroids, jacking up my system for many days afterwards. But guess what: the slow-and-low approach of the Dutch infusion probably paired with my body now becoming familiar with its nemesis left me with no itchy throat.

I arrived at 8:15 in the morning— not according to what worked best for my schedule, but in a very orderly Netherlander way of: this is just when the infusion day begins, and this is the time you will arrive. I normally bike all over town, but they said I wasn't allowed to bike home. So, I happily walked thirty minutes through the cloudy cold morning, grateful I wasn't doing the 2.5 slog from Amherst to Boston or 1-hr drive from Amherst to Wooster that I used to take for my infusions in Massachusetts.

As they set me up, I chatted with the nurse about his travels in Yosemite and his curious skepticism that things in the US are truly THAT bad. "I think that some things about the United States are very good." Well, I agree, sir. Like the New York City Dyke March circa 2004 or walking by a bunch of people line dancing at a family reunion in a park or the pointy stubs of trees that beavers have chewed down and transformed into their domed home on a nearby pond.

After the line was set and the drip started, a hospital staff came in with the question: koffie or tea. She came back again an hour later to clear out the dishes and ask me if I would be staying for lunch. I said I would and, instead of a plastic plate with a plastic lid with a salad that's been slightly warmed (my clearest memory of US hospital food from the week and a half I spent at a hospital in 2015) a ceramic plate arrived with a beautifully simple Dutch lunch: brown bread that actually tastes good with a modest but effective smear of fig jam and three slices of brie cheese, cut diagonally. Sitting next to it was what I thought may be the famed buttermilk that I hear is a staple part of Nederlander breakfast, but was instead Optimel, the fruit-flavored kefir yogurt that my kids drink at school and is, as they say, lekker.

At 4:15pm / 16:15 in Netherlands time, my infusion was finished. I packed up my book and sweatshirt and the snacks I didn't need, and calmly walked through the bright and quiet hallways to meet my wife who was coming to walk with me home. My day was gentle, my day was fine. My infusion day was based on steady progress, not speed. It was calm and orderly and predictable; boundaried but kind. And for this, like so many other small-but-big differences between life in the Netheralds and the US, I am grateful.

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If you’re considering leaving the US my wife Nova and I wrote a book to help hold the big questions and research. It's rooted in the belief that there's not one right answer but instead drives the question: what's the next right step for the next season of our life based on what's actually true and the life you want to build.