Until the Moon is Back in the Sky

move over Aurora, there's a new princess in town

Well, this won’t last. 

The last few weeks have been wildly productive for me personally. I launched a new Substack. I wrote over 10,000 words. I took on a new project for the brand I have a contract with. I’ve been able to do all of it while running a home, being a partner and a mom to my kids. And right in the thick of all that mental clarity and capacity, I had a snarky little thought weasel into the back of my brain: “This won’t last.”

I live with a chronic illness known as PMDD. Part of me wants to detail what the experience is like for those who aren’t familiar with the diagnosis. The other half of me is too mentally exhausted to lay out every facet of what PMDD brings into my life. 

Every month I experience an onset of debilitating symptoms: severe mental fog, fatigue, confusion, sensory overload, joint pain, diarrhea, headaches, insomnia, anxiety attacks, and clinical depression.

I tell people it’s PMS but, like, cranked up 50 notches. It’s a fun time. 

Thankfully, I’ve been able to get the symptoms to a manageable place. Before my diagnosis, I was barely keeping my head above water. Every month slammed me in bed for days at a time. I was blindsided by the depression and mental fog and berated myself for not being able to “get it together.” This only exacerbated the symptoms. 

Now I know I just need a couple days to fall apart and plan accordingly. 

It was a fairy tale—told in a surprising way from an unexpected source—that recently helped me make peace with my chronic illness. You’ve heard the fairy tale before, but not like this.

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In George MacDonald’s book, “At the Back of the North Wind”, he includes a retelling of the classic fairy tale, Sleeping Beauty. In this version (Little Daylight) is cursed by a wicked fairy but in a much different way than the story we probably know by heart. The curse is that she will always fall asleep during the day. Once she’s cursed, a good fairy steps forward and adds a gift to the curse: she will then be blessed to be awake all night. 

The entire palace has to adjust to the curse the tiny princess lives under. A new normal is established. And because she’s only awake at night, the princess’ health becomes intertwined with the cycles of the moon. When it’s full, she is bursting with life. When it wanes, she withers into a shadow of herself. 

“As she grew older she had grown more and more beautiful, with the sunniest hair and the loveliest eyes of heavenly blue, brilliant and profound as the sky of a June day. But so much more painful and sad was the change as her bad time came on. The more beautiful she was in the full moon, the more withered and worn she become as the moon waned. At the time at which my story has now arrived, she looked, when the moon was small or gone, like an old woman exhausted with suffering. This was the more painful that her appearance was unnatural; for her hair and eyes did not change. Her wan face was both drawn and wrinkled, and had an eager hungry look. Her skinny hands moved as if wishing, but unable, to lay hold of some-thing. Her shoulders were bent forward, her chest went in, and she stooped as if she were eighty years old. At last she had to be put to bed, and there await the flow of the tide of life.” - At the Back of the North Wind, Chapter: Little Daylight, George MacDonald 

I’ll not spoil the entire story here, you need to read yourself. Namely because this retelling beautifully fixes the myriad of issues present in the Disney version we all grew up on. And if you’re a Tolkien fan like me, you might notice a few subtle influences as MacDonald was a favorite author of Tolkien’s, but I digress. 

I shared this portion of the book here because I see myself in this little story. Every month the princess finds herself, willing or not, at the mercy of a significant health issue. Every month she experiences what it’s like to feel “normal” but as the moon fades from the sky, she loses vitality and strength. No one in her life can take it away; all they can do is help her adjust her world (and theirs) to accommodate for the situation as she suffers through it. 

This is life with a chronic illness.

One of the best skills I learned to help cope with PMDD is to objectify it. In other words, the way my chronic illness makes me feel isn’t a result of my personal failing, it’s simply an event happening within my body.  

My therapist has worked with me to frame a PMDD flare up the same way I would coming down with a migraine or stomach bug. Sure, experiencing it sucks, but getting sick wouldn’t be due to me morally falling short in some way. It’s just something that happens in my body. I now see PMDD the same way. Whatever accommodations I need to make to navigate it don’t need to send me on guilt trips or self-loathing retreats. I don’t have to over explain or defend the changes me (and my family) have to make to get through it to people who don’t care to understand.  

Again, in the George MacDonald’s version of Sleeping Beauty, he sums it up rather succinctly:

“I will not describe what they had to go through for some time. But at last the household settled into a regular system—a very irregular one in some respects…Her father and mother had by that time got so used to the odd state of things that they had ceased to wonder at them. All their arrangements had reference to the state of the Princess Daylight, and it is amazing how things can contrive to accommodate themselves.” - George MacDonald, At the Back of the North Wind

This week, I’m having to objectify my chronic illness and settle into what is a “regular” system for our family. Someone observing from the outside might see the laundry piled on the bed, the take out food containers on the counter, the TV on for hours at a time and think I’m failing at my roles. 

I know it’s just me waiting until the moon is back in the sky. 

I get weary of the chronic illness roller coaster. The highs are really high: wildly productive, full mental capacity, forward thinking, bushels of creativity. And the lows are really low: executive dysfunction, brain fog, physical fatigue, hopelessness.  

Right now, I’m in a low. It may be easier than it used to be, but it’s never easy. I can have all the therapy tools and faith that Jesus is present with me through this and still wish it would all go away. 

This week, I’ll be forced to rest my body and my brain. I’ll need to unapologetically  communicate what I need and step back even if no one understands. The things I was able to do the past four weeks without missing a beat will have to be momentarily shelved. I’ll have to be wise with what I use my hobbled capacity for and let the rest go. I won’t need to waste time beating myself up for living in this temporary reality. 

My chronic illness forces me to stare my humanity in the eye, to hold it with gentleness and grace; to see the story it offers if I’m willing to sit with it long enough. This part of the story is hard and ugly. This part of the story is me quietly suffering. This part of the story is dark.

Thank God, this won’t last.

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ps. here’s a poem a wrote years ago that continues to be a comfort to me. I hope you find some in it as well.