apathy, avolition, blogging, Bloodstone, book series, brain chemistry, Calcitriol, calcium, Char, depression, diagnosis, disorder, endocrinology, Fae of Fire and Stone, fairy tales, fantasy, guilt, health, hope, hormones, hypocalcemia, hypoparathyroidism, inspiration, life saving, medical, medical study, mental-health, Natpara, not giving up, OPAL, parathyroid, parathyroid hormone replacement therapy, psychiatric disorders, severe depression, sneak peek, tetany, vitamin D, World Weaver Press, writer's life, Writing
I cannot remember when last I Tweeted or blogged about my writing, or worse, how many months (years?) I have gone past the projected timeline I had for finishing my latest novel. Depression has me by the throat, and writing is too like speaking, too like living, for the big D to allow it. It is a strange thing, to stand outside of yourself and wonder if it’s worth it to wake up one more day, let alone crack open a 125,000 word document another, long-forgotten you once fed with every scrap of her soul.
Last week I was informed by my endocrinologist that a single, tiny orange pill I take once a day is quite literally keeping me alive. It is a long and complex medical story I will spare you, except to say that I no longer have any parathyroid hormone production, which is something you can’t live without (unless, of course, you have that tiny orange pill). The tiny orange pill is activated vitamin D (vitamin D is activated in the human body by the parathyroid hormone which I lack). Without that pill, I cannot absorb calcium, my blood calcium levels rapidly fall, and if gone on long enough, it will lead to tetany, seizures, heart failure and death. But don’t worry, I take that orange pill religiously–I’m a mother, after all.
What has been most interesting to me is what I’ve come across in reading about the psychiatric manifestations of hypoparathyroidism (the long, intimidating name that simply means not having enough PTH hormone). Namely, severe depression. Here is a case study of a woman with the same condition (but less well managed, and likely from a different cause) whose calcium levels were too low for too long, though not quite low enough to end her life. The list of psychiatric “a-words” she suffered from (“a” or “an” being a prefix that basically means “absence of”) is a bit staggering: “asociality, anhedonia, avolition, apathy,” among other serious issues, like suicidal thoughts. Anhedonia means inability to feel pleasure, and avolition is an absence of motivation– in other words, a wondering what in the hell you’re waking up for each day.
Once I received my diagnosis and did a bit of reading, I was able to connect the psychiatric manifestations of hypoparathyroidism with my own list of “a-words” (aka-inabilities to will myself to participate in life). And I realized something spectacular: this wasn’t my fault! I hadn’t just turned into some ugly, unfeeling, uncaring, lazy anti-human of my own volition (nor does anyone with depression, but it can feel that way). No, my brain was lacking a necessary and life-sustaining hormone. And the tiny orange pill, while keeping me alive, is not able to replace what I’ve lost.* Suddenly the huge, hairy behemoth that goes by the name of Guilt got up off of my chest and for the first time in a long time, I could breathe a bit more easily.
Not only could I breathe, but I told myself I could write as well. I didn’t quite believe it– all those “a-words” are still stabbing at my brain with their cruel spears, after all (does A-fraid count?) But I was determined to force myself to make another go at it regardless of how I felt, both physically and mentally. And there, in the very beginning of my long abandoned story, I read the almost divine encouragement spoken by a hunted queen, a character who is aware that her hold on life is very tenuous, yet who kindly delivers hope to a lonely little girl. Here are those words, taken directly from my draft:
The queen tore her gaze from the little creature and found Alyss staring up at her. “Alyss. There is so much I want to say to you… Don’t despair if ever the candle won’t light or the book won’t share its secrets. There are days like that, when the world seems to conspire against your every effort. Sometimes those days go on for years… Yet you must never give up altogether,” the queen said, her voice so distant Alyss almost failed to hear her. “If there is anything to be learned from the Untold Story, it is that life shall prevail.”
And so, apparently, shall the story. Maybe even the writer. Yes, I shall prevail, for as long as there is a spark of life in me, whether my brain cares to register it or not, whether my soul acknowledges its worth or not– I shall force myself to write. I will write even when life looks the other way. If I cannot find a way to live more fully, I can at least tell myself tales about what it must be like. And maybe, if I ever finish, someone else will get caught up in the tale, and will wake up wanting to read the next chapter.
*For those who are interested, the orange pill I am taking is the prescription Calcitriol, which bypasses the non-functional parathyroid glands and gives the body the activated vitamin D it is unable to make on its own, even from natural sources of vitamin D like sunlight. Calcitriol is not a hormone, and does not replace parathyroid hormone, however there is a new drug called Natpara which is a replacement of the parathyroid hormone patients with hypoparathyroidism lack. Natpara is still quite new and while it has been made commercially available, studies are still being done and it isn’t always easy for patients to get approved for insurance coverage for such a new drug. I am currently seeking approval, and if approval cannot be had, I may be joining a clinical trial in the hopes that I will be one of the randomly chosen patients to receive the drug rather than a placebo. If you’d like to find out more about Natpara, please visit their website.