Originally sent in my monthly newsletter. Subscribe to my Wandering Words here.
Every year I’m enchanted by the quiet death of summer and the cooling rise of autumn. This transition occurs around dusk when the winds pick up and goosebumps pop along my arms. I’ll stop and look at the sky; the clouds are always those heavy, rolling gray ones. Autumn arrives as a whisper, but I listen for it year-round.
I’ve been busy, but the bad kind of busy. The stressed kind of busy. The kind of busy where you overfill your plate and choke.
This September, I choked. I took on too much, and everything crashed when a predictable health emergency left me out of commission for almost a week.
Let me back up: I have porphyria. I’ve mentioned this before, but usually as a rushed footnote. I don’t like talking about my rare disease and the limitations it places on my life. I wrote an article about living with porphyria for the American Porphyria Foundation a few years ago, and I kinda hoped that would be the end of it…but a lot of the details in that article have changed, and not for the better. I’m sicker. The empathetic job I spoke about laid me off in 2019, and I’ve struggled to find compassionate, flexible, gainful employment in the almost two years since.
Also, my partner and I broke up, and my mental health took a nosedive.
I’ve been keeping all these ugly details hidden, hopeful I could stall their truths long enough to fix them. You know, fix porphyria, fix my relationship… fix me. Except porphyria isn’t fixable: it’s a chronic illness, and it might be the most constant thing in my life now.
That’s a hard pill to swallow, and probably why I choked. It’s frustrating saying no to projects and jobs I have a passion for and could succeed at if I wasn’t sick. It’s devastating to admit, “I can’t do this on my own.” It’s exhausting putting my health first because that means redesigning my future, my career, my relationships, and my passions. Knowing I might never be healthy enough to work a 9 to 5 has left me with the worst self-talk. I am cruel to the woman in the mirror. I look at her, at me, at my yellow skin, tired eyes, and aching body, and I draft terrible words. Words like: waste, loser, freak, invalid, lazy, and failure. They linger on my lips and slip out every time I send a resignation email, take pain medication, or walk away from an opportunity I so badly wanted to take. I wish I could have more compassion for myself, but I am not given compassion as a sick person. Our culture and our country do not value people for being; we only value a person for doing.
And sometimes, I just can’t do. I can only be.
Another reason I’ve shied away from speaking candidly about my rare disease is that I don’t want porphyria to define me. While many people find strength in talking about and sharing their chronic illness with the world, I never want to be known as “that porphyria girl.” My passion isn’t porphyria. I fucking hate this disease. My passion is storytelling: writing, singing, acting, directing, and creating. I want my stories to define my life, not a shitty genetic disease that killed my father and is slowly killing me.
But I can’t create without porphyria. Porphyria is (literally) in my DNA. It’s part of everything I do. Some days, I wake up and have energy, strength, and drive. Other days, I stumble out of bed and barely make it to the bathroom before waves of nausea and pain assault my body. Most days are somewhere in-between, but every terrible, painful, consuming detail of porphyria affects my ability, my creativity, my very words, and my art. I can’t ignore it anymore.
What does this mean? Well, it means I’m going to start talking about porphyria: how it affects me, my writing, and my life. I’m going to embrace having porphyria, having limits because of my porphyria, and having that unique, rare-disease-resilience because I live and dream and create despite my porphyria. I owe it to myself, my family and friends, and my readers to not only stop denying this part of myself but embrace it.
I am a writer. I have porphyria. And these are my stories.