On cursebreaking

and being broken by my curses

Trigger warning: medical trauma

Dear Wanderer,

It’s been several turnings of the Moon since I’ve last written you. I’m thinking of deleting the paid tier of this platform because, as I am trying to make clear to my state disability services, I cannot reliably produce anything on a timeline. Chronic illness can go from a hum to a roar to an explosion without warning and when it does, everything stops. But I will keep writing to you, Wanderer. A true exercise of the will, I’ve realized, is to continue to choose even when it feels like you have no choice. Even when there is no escape, there is choice.

Maybe if you are an elder to me you can tell me if the things we try to escape always become the centers of our lives, the drivers of our stories, as we get older. It seems to be that way to me.

There are some stories we move through and leave behind us like shed skin. I am old enough to have had some of these. But there are some stories we can’t ever leave behind and have to reckon with over and over. These are the stories we live out. We don’t get to see outside of them because we are inside them. That’s where our work is.

As much as I’ve wanted my work to be in creation—making art—I’ll admit that most of my work in this life has been in the breaking of curses: ending cycles of abuse, neglect and abandonment, making hidden things visible and regrowing connections to life and community. But the work of cursebreaking is the work of a lifetime, of many lifetimes, many generations. There are curses I have passed on, and curses that still, on occasion, have me at their mercy.

And I never see it coming. Even after all these years of living in my own body, I am taken unawares by all the strange things that can go wrong with it. This spring, after months of constant illnesses brought home from school by my children, a random, common virus shocked my bone marrow, already stressed from being bad at its job of making red blood cells, into stopping red cell production altogether.

At first I was just sick. I slipped in and out of fevered sleep for days, over the course of which we moved house and found that our old, tiny apartment has been harboring mold behind the furniture—certainly a contributing factor in our catching everything this winter and spring.

We are lucky. Our new new home is larger, lighter and blessedly mold-free. Our first day there I was awake long enough to realize I could hardly stand without passing out, I was white as a sheet, my heart was racing and the tips of my fingers were going numb. For me these are signs that I am dangerously anemic and need immediate medical attention.

After convincing myself to go (which was not easy) I was admitted to the hospital through the ER, but there was no available bed for me so I spent 36 hours on a gurney in basically a hallway with eight other beds and no privacy, a place the nurses lovingly referred to as “the Dungeon.” I have lots of medical trauma and a special hatred for needles. It took them three tries before a vein was found that would give blood and permit an IV.

I had a blood transfusion and round after round of antibiotics until I was coherent enough to receive the full sensory force of pure human suffering around me. I listened to doctors pop by to say things like “enlarged spleen” and “bone marrow biopsy” to me that trigger panic and shut-down.

Because I know what these words mean. I have heard them all before. They were all precursors to my mother’s death. When these things happen and I feel myself following in her footsteps my life contracts into a small, dark tunnel of hospitalization, invasive procedures and eventual death. This is my greatest fear: living the rest of my short life declining in a hospital where I am hurt over and over, like my mother was, and then dying and abandoning my children, who are currently the exact ages my sister and I were when our mother died. I can’t stop hearing my parents talking in my memory about how much pain my mother was in, her fear and her dread. The urge to rip the IV out of my arm and run, if I could, is overwhelming.

36 hours in I kind of lost it. I don’t think I could have survived without my sister, who sat with me and talked to me and coached me on my rights as a patient. The emotional and sensory overload was just too much, especially as a neorodiverse person. My brain stopped accepting input after doctors started suggesting doing an incredibly invasive procedure on me, right there in the hallway, while people screamed in pain and interpreters talked loudly and multiple conversations happened over at least three kinds of beeping.

“I’d like to go home,” I finally said to a startled nurse, and then a doctor or two, “and come in for labs tomorrow. I’d like to continue as an outpatient.” They were not receptive. I ended giving basically a speech at full volume (to be heard over all the other noise) about why what was happening was not okay for me and why I needed to leave—that I had watched my mother die of this same condition as a child and I needed to rest and process and a little privacy before I could handle someone drilling five inches into my hip bone.

I was at the very edge of my ability to function but it must have worked because soon a doctor came and proposed enrolling me in a program called Hospital at Home, where you are technically still admitted to the hospital, but you’re at home and they bring over all this gear and send a medic a few times a day to take labs and do vitals.

I think everyone in the ward must have heard me because, as I was leaving a few hours later, a guy I’d never seen before (a nurse? maybe?) came up to me and wished me well and said he was sorry for everything I’d been through. I mumbled something and then stumbled like a zombie to the medical transport that took me home where I could panic and cry in releative peace.

The thing about the hospital is that it is almost bearable if you have room with a window out of which you can see a tree. Without that, it is not bearable. I think the medical industry should know this and design accordingly. The hospitals in my city are grievously overcrowded and understaffed, which is why there are places like the Dungeon. It harms both patients and staff. I don’t know what the solution is. My mother’s whole family has immigrated to the United States from the Philippines to work as nurses. There aren’t enough of us.

I spent three days in Hospital at Home being monitored (and having one really fun drug reation requiring intravenous Benadryl). It was overall a positive experience to receive the necessary care and support in an environment over which I had some control. I wish my mom had had that option. I wish everyone did.

My blood count stabilized and, after testing me for every known virus in the universe, doctors felt confident they knew what had happened and why, so I was “discharged.” They also canceled all scary procedures for the time being and are monitoring me with outpatient blood work, which is triggering and an ordeal every time. But a smaller one.

I left the hospital to find that my life had completely changed. Not only did I live in a new house, but my mind became a minefield of dangerous thoughts and feelings. I felt exhausted and scared all the time, running recent events over and over in my head and being constantly terrified about the future. I became depressed and anxious and unable to stay in the present moment. I still haven’t set up my altar in my new home or attended a full moon ritual or done any of the the witchy things one does upon moving to a new place. I didn’t work on school or contact my advisor for several weeks. It took time, a good flower essence and some very intense therapy sessions to realize that the fundamental truth behind my difficulties was that my trust in life, the sense of safety I have worked so hard to build in recent years, has been broken.

There was nothing that could have protected me from what happened, and there may be nothing that can protect me from whatever might happen to my body and my family in the future. This is true for all of us, but with my illness so deep in my body and past, the call is really coming from inside the house, you know? I am still subject to my curse, and every once in awhile it reminds me of that fact in terrifying, painful ways. It’s hard to live with, Wanderer. It made me wonder if any of the work I had done was even real.

In order to begin to heal, I needed to see this about myself. The part of me that feels scared and distrustful and betrayed by life needed to be seen and witnessed and cared for. Even though I can’t change the past or any eventuality, locating the wound and comprehending its exact nature has allowed me to start the process of moving forward. It’s like this, I think. I think being broken by our curses is part of the process of breaking them. They break us and we heal. They break break us again and we heal again. Maybe not completely, maybe not ever to the way we were before, but we find some way to keep growing and living. Life insists its way forward in spite of everything, as it does. And life ends, but it doesn’t. Not before we’ve had a chance to pass forward what we’ve learned. That’s the hope anyway.

I can’t really say that the real crisis is a crisis of faith, because the real crisis was a crisis of mental terror and physical pain. The ill are not weak. They are the ones who learn what strength and endurance and survival really mean. But the loss of faith that comes with enduring these realities is the wound that is the doorway to our strength. I’m not religious so I can’t say faith in what, though I am aware of the life force that flows through everything and sometimes communicates in different voices, wearing different faces. It was not the Goddess or the Earth or the Moon or the River I involed in the ER to stay sane, but chronically ill/disabled writers Johanna Hedva and Sophie Strand on either side of me, holding me hands and screaming like actual banshees, loud enough to drown everything out. I guess the faith I mean is just the faith that there won’t always be suffering—even if there sometimes is. That the ground beneath my feet will continue to be there. That there are people and things I can trust, including myself. That I don’t have to be scared every moment.

After all, when it did go to shit I was scooped up and supported. My friends picked my kids up from school and fed them dinner. My partner took paid leave and did EVERYTHING. My sister, my sanity, left their own family and drove for hours to come stay with me in the hospital and didn’t leave until I was home. And I was cared for my caring people. Good nurses are literal angels. I have a special kind of gratitude for these strangers who treat me with kindness and sensitivity when I am at my most vulnerable. Even my experience with Hospital at Home helped heal, in some way, my relationship with the medical system I am forced to depend on.

And my body, my wonderful body, is getting better. It responded to anitbiotics and started producing red blood cells again. Erythropoiesis is what it’s called. And I am still here, picking my way through all the possibilities, good and bad, toward the next day and the next, despite the power of my curses. I think they call that “keeping the wolf from the door.”

Sometimes the only way to break a curse is to live with it, in spite of it, and even, maybe sometimes, kind of because of it. After weeks of doing nothing I was overcome with the urge to plan camping trips and get a tent and paddleboard—because I want to live. Because I have to live while I’m still here, however long that is. I want to give my children experiences and memories, and I want to have experiences too. I’ve also been knitting like crazy, and spinning and weaving, because I think it’s magic to be able to create an actual thing with your hands and your heart and your intelligence. I can imbue a part of myself into these things, for whatever that’s worth to me and others who might want them. These activities connect me to humanity, to women, and to the ideas of fate and mending and binding.

I have had to let go of so many worldly agendas over the years and I feel like I’ve let go of even more. I might continue to post regulary but I might miss some too. You can do what you want with that. My focus is on the moments and what to fill them with.

Just living anyway.

Alive,

Sasha