AS Ruined My Birthday
It was a celebration I'd been looking forward to for months — heading down to New Orleans, Lousiana for my birthday, which also happens to fall on Halloween weekend. I wanted to celebrate the magic and the mayhem of spooky season (and my 36th!) in a city that always felt like home to me.
With its inclination toward all things magical and folkloric, and it's being steeped in history and culture, the city itself feels like a city of survival and transformation. In New Orleans, death is at your feet — and so is life, a juxtaposition that means I always leave with a lesson and a realization.
Welcoming our new lives with chronic illness
Living with a chronic illness, we watch our old lives die, and we welcome — with some resistance, of course — our new lives. We watch old versions of ourselves fall away, change, retire, and we find new ways to tune in, to have fun, to communicate, to self-care. I suppose New Orleans is a place that holds a mirror up to the darkness, and to the light.
It comes as no surprise that my birthday/Halloween trip was one I won't forget, although in some ways I'd like to. Before heading to Louisiana from NYC, I was already feeling the pangs of a distant, looming flare-up. It's like a car crash in slow motion; you can feel it and see it happening, up close.
Upon arrival, my pain was already at an eight
But I was so excited, so grateful that my partner and friends had come to celebrate with me, and so overjoyed to be in my favorite city. As time went on, my body took its toll. The pain was overwhelming, but the fatigue had not set in yet. And so, in a way, I had all this energy to do everything, while my body fought me step by step.
My sacrum — on fire. My ribs — tight. My hips — locked. My pelvis — shattered. Every moment was pain. Every moment was planning for more pain, or how many steps I'd have to walk, or how much medicine I could take.
Finding places to sit, skipping cocktails
On a vampire tour through the dark streets, my partner Ben found me chairs to sit in every once in a way. While my friends were buying cocktails, I was worried that the alcohol would make me feel worse.
What I resent the most is having to let go of the idea of myself, and let go of my favorite activities, because my body is approximately 30 years older than my mind is. Can't a girl enjoy a glass of wine while dancing in the gas-lamp-lit streets? Can't a girl just wear her favorite outfit without worrying about if I'll be limping home or not?
Not so fast.
I fell asleep crying
On Halloween night, while my friends continued to dance on balconies and in the music-filled streets, Ben brought me back to our Airbnb, which was this little (perhaps haunted?) loft apartment, tucked away on a quiet street. It felt like a respite to be there. I got into the bathtub, ran the water, and wept. I called my mom around 1 am and told her my body had sabotaged me. And then I crept into bed in my towel and fell asleep while crying.
By morning, I felt I'd faced the darkness — in me, in the city. I faced my ghouls. And so I opened the door and let the light in and tried to count what I was grateful for. It was an exercise in grace when I very much wanted to feel rage.
I've learned that AS is often unpredictable, and it can and will destroy things. I have learned that no matter what, you can't always control it.
But I refuse to give up on life or not make plans for fear that it will rear its head. I refuse to not celebrate. I refuse to not try and find the good. For now.
How much about your AS do you share with others?