Lord Chiari
Lord Chiari
NO talking. NO laughing. NO coughing. Sit still, put your head down. Bow, or I will make you beg…
5/2/16
I keep searching for a different answer. I don’t want to accept asthma or allergies as the cause of my problems because with either I will be doomed to take regular medicine my entire life to keep it under control. I will never be rid of the cause, only treating the symptoms.
And I do not accept that.
So I keep searching for something different and have yet to find it. Everything keeps coming back to asthma and allergies. They are the only things that make sense with my symptoms…except that the medications I take to treat them don’t work. I still cough throughout the night, I still cough throughout the day. I still struggle to breathe.
And as long as I’m coughing, there will always be pain.
2019
The above journal entry from May 2, 2016 is special. A few hours after I wrote it, I stopped taking all my medication.
I recognize my call to quit as Divine Intervention. One of those rare nods when you feel something outside of yourself guiding your hand. Though I was still a few months from being diagnosed with a chiari malformation, back then—without realizing it—I served Lord Chiari with all my heart and soul.
He ruled with fear. Everything was scary, a threat. Anything could set off the pain, and once it started my whole being crumpled beneath it. The Chiari was power, the lord of my life, and it ruled with an iron fist and a sledgehammer. Its rules were many:
NO laughing, NO coughing (but I’ll force you to against your will), NO bending over, NO taking a peaceful, pain-free shit…the list goes on.
If I broke any of these—or a dozen other—of Lord Chiari’s rules, he would release the demon. The demon hid just out of sight—but never out of mind—until the lord called him forward. A flick of his pointed tail was like a thousand deaths in a single, radiating blow, during which I sat frozen, unable to move or breathe, never knowing if I would survive. Once it sufficiently satisfied its need for destruction, it would recede to its hiding place until the next time Lord Chiari called it to do his bidding.
And there was always a next time.
There were countless drives when I should’ve pulled over because I couldn’t move, let alone steer, but if I did I’d never make it home. The parties I avoided in fear of making a scene or because I couldn’t peel myself out of bed, or the ones I DID attend that found me dashing to the bathroom before I collapsed because someone made me laugh, breaking one of Lord Chiari’s most absolute rules. The days I should’ve called in sick but grit my teeth through the pain. And if I dared to enter a department store without a bottle of water in my purse to stave off the inevitable coughing fit (from bad, recycled air, I presume) so help me God.
Because Lord Chiari would summon the demon to punish me yet again.
On May 2, 2016, before he even had a name, I started the long, ongoing process of taking his power away. Today I’m no longer a slave to Lord Chiari. He’s been vanquished, overrun by a more determined heart than he would ever have. The demon is still here, still operating under old rules, but without his master he shows himself less and less. When he does I don’t bow or crumble. I wait patiently while he huffs and puffs and asserts himself, then I look at what his presence actually means. What do I need in my life that I’m ignoring that still gives this demon a reason to appear? Slowly but surely I’m taking his triggers away.
Today he’s a faithful reminder that I still have work to do.