My Ocrevus infusion was yesterday. As discussed in previous missives, these treatment cycles are definitely ways to mark time in layers of time, space, and progression. Bonnie, one of our favorite nurse administers of the $30K bag o’ poison, was delightful as always, and so was her trainee, Jackson. Thank all the gods available for good nurses. Amen.

For reasons I myself don’t understand, I felt compelled to write today, even though there’s little chance it’ll make a lot of sense or be cohesive. So please buckle up for a weird and bumpy ride into the very recently-infused ramblings of this MS-ridden lady.

First, here’s what I’m feeling right now: Encased in porous cement that chafes at the skin. My mind is mostly cloudy with a chance of sleet. My legs go from slow-and-steady to wobbly and weak. Each B cell in its death throes cries out, “What a wooorrrlllddddd…”

Next: I started watching On Golden Pond in the ramp up to my infusion. I was more nervous for this one than most, because I rescheduled it for two weeks later to do something fun on Mother’s Day weekend. By extending the crap gap between infusions and allowing more B cells to regenerate, I increase the yucky impactfulness of the infusion. So I was a lil’ scared. So far, it feels like normal yucky, but it shifts minute-by-minute. In any case, I saw the Fonda-laden movie’s thumbnail and had such a strong childhood-based pull to it, I had to turn it on. It’s no doubt a beautiful film, but for the life of me, I can’t quite understand why it resonated so much as a kid. Watching old movies with my sister familiarized me with Katherine Hepburn, and I loved 9 to 5 with Jane Fonda and Dabney Coleman, even though (in typical ‘80s fashion) that shit wasn’t meant for kids. But aging? Difficult adult child-parent relationships? I still haven’t sussed out why I loved it so much. And I couldn’t watch it through to the end, because I didn’t feel like crying. But hearing Katherine Hepburn imitate loons definitely helped.

And then: I watched Legend with a young, pre-Scientology Tom Cruise, Mia Sara (from Ferris Bueller), and Tim Curry as an evil demon. Why? On the way to the infusion, my spouse and I were talking about whether or not we’d had a unicorn and/or horse phase as kids. I had both. But the ‘80s unicorn representation was (SURPRISE) messed up. Between Legend and The Last Unicorn, it was intense. But what I remembered as a laughable movie with a glitter-encrusted Cruise was actually pretty solid. Tim Curry is amazing. In our dystopian AI acceleration, it’s already hard to imagine how they achieved the makeup and effects they did without CGI. Next time you have a yucky treatment, I recommend this escapist insanity.

Finally: My kid is prepping for final exams, and the end of the year projects and studying is INSANE. She’s stressed, and it’s hard to feel extra special subpar at times like this. I push through as much as possible, as parents in general often do, but it’s rough. For all of us. Cheers to all the parents with chronic illnesses out there, because this shit ain’t easy.

In conclusion: Once more notch on the ol’ IV pole. I’m grateful for access to my infusions. I hate my infusions. Perhaps you have treatment(s) that are terrible and helpful in allowing you to keep functioning in some way but make you feel like garbage. One more shot. One more pill. It ain’t perfect, but it’s what we’re working with. I encourage you to take refuge in inscrutable childhood resonance, glittered unicorns, and great performances. I encourage you, period. I hope some small comforts come your way today.

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