A year ago I lost five days of my life. It’s not the first time I’ve lost several days in a row, and I can’t know if it will be the last. I didn’t lose them because I went on a drinking binge or some other drug-induced haze. I lost them because my body, for reasons unknown, decided to stop working. It decided that food and water does not belong in my stomach and even bile should be evacuated as soon as possible. I lost them because an outside force came and took ownership of my body, while I watched, detached and unable to stop it.
This portrait, created by my good friend from high school, Jessica Caldas, is my attempt through my description and her artistic skill, to capture what that experience, what that lost time is like for me.
I have Cyclic Vomiting Syndrome. It’s characterized by repeated vomiting episodes with similar patterns and triggers and experiences. It’s a diagnosis many in the medical field don’t even know about, and those that do rarely understand it.
This portrait is my attempt to welcome you into that experience. I don’t want to talk about the scientific understanding of this disease and it’s treatment (though I could). Instead I want to talk about what it feels like to be victim to this confusing and debilitating disorder.
As I was talking with Jessica about what I wanted this portrait to capture, I kept coming back to two points: 1) the heaviness of the Nausea and 2) the outside force of the Nausea and the out of body experience it creates as it takes over my body.
The Nausea I experience during an episode has never felt like a symptom, but an entity. There is a dread and a fear and a powerlessness I feel when I suddenly realize “It’s Here.” It descends upon me and it becomes my only reality. My own type of Camazotz, the Nausea my IT, every breath, every heartbeat now controlled by IT’s pulsing dominance, but there is no hope of being like Meg and overpowering IT. There is nothing but the Nausea, and my only hope is that someone will tesser me to the hospital where an Aunt Beast might help me find the sweet relief that can only come from knocking me out.
The Nausea is like suddenly finding myself in the Upside Down, it’s vines twisting tightly around me and down my throat, suffocating and absolute. It sits on my chest and weighs on my stomach and squeezes my throat, and twists with every breath.
The Nausea is like being taken over by a Yeerk. My body is no longer my own, my brain isn’t either. I watch as things happen, and I hope that someone will see my distress, see that I’m a hostage, and rescue me from it’s clutches.
The Nausea is like labor pains, that build and build and build and they crest, culminating in frothy bile that burns on its way up, only to build again, and again, and again. But there’s no delivery, there’s no end, there’s just more Nausea, and more after that.
I can’t think straight. My words come out short and to the point. Almost always repeated in threes. Almost always words of despair like “I’m trying, I’m trying, I’m trying” or “I can’t, I can’t, I can’t.”
It’s hell to watch me go through it, and the few friends that have seen it up close and personal can’t forget it. My mother just needs to see my face, or hear me say one word to know if she’s talking to me, or if the Nausea has taken me hostage again. I depend on my friends and family to remind me what I need to do next because I can no longer think clearly. “Do you want to go to the hospital?” “I don’t know, I don’t know, I don’t know,” I cry.
At the hospital, once I mercifully receive an IV (a harder and harder feat after years of scarred veins from repeated episodes, and the severe dehydration that comes with each episode) I can look forward to the relief that only IV medication that disrupts the short-circuiting stress pathways can bring. As the drugs take effect, as I drift off to sleep, I may be able to feel the Nausea disentangle itself from my body. Untwist its vines, slither out of my ear, and let me breath deeply again. When I wake, I hope that Nausea is still gone. I take a deep breath, and breathe a sigh of relief once I realize it’s only me in my body again, and I’m back in control. With luck, maybe this time it will hold. Or, if I’m less lucky, as the drugs wear off, the Nausea returns. And the cycle continues.
Eventually, I’ll come out on the other side and discover days have passed. I’ve taken and posted selfies I can barely remember, I’ve had entire text conversations that make no sense and I have no recollection of. I’m brought some chicken broth, and nothing has ever tasted as good as the warm, salty liquid does as it slides down my throat and sits in a stomach that welcomes its entrance. That remembers it has a job to do, a job that keeps me alive and functional.
I slowly piece together the lost days, and reenter my life. I count the lessons I’ve learned and note reminders for next time. Don’t let them discharge you until you’ve not thrown up for at least 12 hours. Don’t eat anything heavier than clear liquids for at least 24, no matter how ravenous you feel once your stomach starts churning again. I restlessly sleep off the drug-hangover, and try to be glad for the gaps in time it gave me, because I may have gaps in my memory, but at least I’m back in control again. At least I’m me again.
I try not to think about how easy it is to lose myself. How quickly my body and mind can be taken over. I try not to wonder when it might return again, and whether I’ll be able to stop it next time. I try not to think about the people who aren’t able to find relief as easily, and wonder what makes me different from them, and whether next time, it won’t be as easy.
I reenter my life and I remember that I have work to do. Beautiful, life-changing work, that allows me to enter into others’ suffering, and provide them relief and understanding. “I’m so nauseous. I’m so uncomfortable. I’m not sure I can do this, I can’t handle this.” “I know. I’m coming. Let’s see if this helps.” I push drugs and read research articles and I advocate for my patients’ pain and distress. And I think about how fortunate I am to get to do this work.
I pray that I continue to have mostly well days so I can continue doing this work. I’m thankful my suffering is not the end of my story.