Hospital boudoir shoots, mermaid transformations, and made-up holidays

On the gifts of my chronic illness and making the unknown more magical

Two years and 12 days ago, I was in the hospital receiving a diagnosis of multiple sclerosis.

My initial reaction was the one you might expect — I cried.

But what came after a few minutes of tears was surprising. It was a wave of absolute love and admiration for my body. She was trying so hard! She was dealing with so much!

MS is an autoimmune disease that attacks the coverings of the nerves, so when your brain sends a message along that nerve it might leak out where the covering is missing, and the body part your brain was trying to talk to doesn’t get the message. This is what causes people with MS to lose sensation and ability — sometimes sight, sometimes sound, sometimes control of their limbs or even bowels.

So while I was overwhelmed at the idea of having an incurable illness, I was also overcome with gratitude for all the sensation and ability I still had. Suddenly I realized how precious and precarious this body was, and I was struck with the urge to celebrate her right there in my hospital room.

The obvious next move was to do a hospital room boudoir photo shoot.

Please tell me you get this reference, I was so proud of this joke.

That immense gratitude for my senses and abilities has been the hallmark of my experience of MS over these past two years, maybe because at the start of this journey I imagined a little magic.

June 7, 2022 was the day my symptoms suddenly appeared. I woke up that morning and my body was numb from the waist down. At first I thought maybe I slept in a weird position and my bottom half fell asleep, like your foot falls asleep after you sit on it a while.

Nope. No amount of tapping, slapping, or jumping jacks would get my bottom half to wake up.

I don’t know if you’ve ever attempted to get an appointment with a neurologist or just navigated the U.S. health care system generally, but trying to get an answer about my mysterious numbness became a part-time job.

For six weeks I made phone call after phone call to my insurance, various doctors, and MRI centers, all of which were thoroughly unsatisfying and often left me in tears. Meanwhile, my feet were almost completely numb, which meant I had to slow my trail runs to a walk because my feet could no longer sense the irregularities in the terrain and I worried about breaking an ankle or worse.

When you suddenly and mysteriously have been stricken numb in half your body, six weeks is a long time to not know WTF is happening. It was tempting to reach for worst case scenarios and wrap myself miserably in them like a blanket of doom.

Because I couldn’t resist a little light Googling, I discovered that the worst case scenario was multiple sclerosis. Since I couldn’t know for sure that’s what it was, I decided not to go down a dark rabbit hole on what potentially having MS could mean for me.

I realized, sitting there in the unknown, that all I had to hang onto was my imagination. Did I want to imagine something awful? Or did I want to imagine something more magical?

What was the most magical reason I could conjure for why I was suddenly numb from the waist down?

What creature had I seen that took an unexpected form below the waist?

What if… what if this sudden numbness from the belly button down was the first stage of my transformation into a mermaid?

This idea absolutely delighted me. So anytime I caught myself getting whipped into a whirl of worry, I took a deep breath, closed my eyes, and imagined myself perched on a rock in the ocean, my new, shimmery mermaid tail reflecting the sunlight. It made me smile every time.

Six weeks, two MRIs, and one emergency room trip later, I found myself wrapping my leg around an IV stand like it was a stripper pole and posing suggestively with a “soiled linens” bin in a hospital room.

Because I had spent my six weeks in the unknown seeking magic and lightness, when the diagnosis came down I think it felt far less heavy than it would have if I’d been sitting under a blanket of doom all that time.

Before my diagnosis, what I thought I understood about MS was that folks who had it were almost guaranteed to experience a dramatic loss of ability at some point in their life — unexpectedly, irreversibly. A couple years before my own diagnosis, when I learned a friend had gotten MS I remember very clearly thinking, “Well shit, she’s a goner.”

And for most of human history that might have been true.

But two summers ago in the hospital, my neurologist explained that the medication he was prescribing me — a twice-yearly infusion of a powerful immunosuppressant — was so effective there was almost no chance I would lose new sensations or abilities due to MS.

That medication only got approved in 2017.

What a time to be alive.

So now I celebrate every June 7 as my own personal holiday. I call it “Sense Day,” and I take the day off to intentionally celebrate each and every one of my senses. I ask myself — what is the most delightful thing I could taste? See? Touch? Smell? Hear? And then I go find and experience those things.

This year I posted a video of my Sense Day:

But because I know there are so many people throughout human history who lost abilities, sensations, and ultimately their lives to this disease that these new drugs protect me from, this is not a holiday that I keep only to myself.

As I luxuriate in all that my body is able to experience, I carry those who came before me in my heart.

After my waitress at lunch told me that her nana had been hit hard by MS, I promised to bring her nana with me as I went on to see colorful art and smell potent soaps at Lush and experience the satisfying squish of a jelly pedicure. I always bring everyone who’s ever had MS with me in my Sense Day celebrations.

What this experience has taught me is that in moments of uncertainty, there is no harm in imagining the most magical ending to the story.

We can be aware that the worst case scenario is out there, but while we wait to see if it comes to pass we can delight in what is good about the current moment. We can put our energy into imagining the magical, which actually ends up creating a little bit of magic.

Then if the worst case scenario lands on us, we are receiving it with an energy that is bright rather than an energy that is dark. This makes us more powerful to transform a heavy thing into something that is light enough for us to carry.

Where are you experiencing uncertainty that is making you feel anxious and gloomy?

What is the most magical ending to that story you can imagine?

What happens in your body when you envision that magical ending?

Can you come back to that feeling each time the worry creeps in?

---

With much gratitude to Andrea Gibson whose essay “In Praise of Not Knowing” and the overwhelming response from their lovely community to the comment I left there about my MS journey inspired this post.

And Happy Disability Pride month to all my fellow chronically ill and disabled siblings. <3