June Heart Log

An honest expression of the grief and fear I'm facing, amid all the wonder and joy

sometimes I am startled by all the magic.

I’ve been wanting to write letters to people in my life to say what has been on my heart for many many moons, or to write more poetry, or to simply share the blessings that have found their way into my world lately, which I am unspeakably grateful for. Alas, I can never force the process, and many urgent distractions seem to take precedence, so I sit down to write when I can no longer ignore the absolute necessity to do so.

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Today I am writing this because I was overcome with the need to grieve and be afraid. There are dozens of parts of me, little me who learned to survive in the most imaginative ways, who are ineffably and often inconsolably terrified.

Fear #1: More Pain

A very young and neglected part of me is deeply scared of worsening physical pain. This is a highly notable trend in my body as of late; there is plenty of evidence to suggest that it will continue to worsen, just as it has, steadily, for the last seven years. Call it fibromyalgia, call it complex regional pain syndrome, call it complex post traumatic stress disorder, call it whatever you want. Fire in my spine, in my neck and shoulders. Pins and needles and small daggers in my ankles. Screaming aches in my hips and legs that lead to collapse. Ever-present, morphing and looming pain. Sleep-interrupting pain. Thought-killing pain. I-am-your-shadow-and-your-demons type pain. Stop-ignoring-me pain.

Fear #2: What More Pain Will Bring

Another part of me is very afraid of what will happen as a result of the aforementioned increase in disability and suffering. The risks of social isolation, medical neglect or abuse, unemployment, and abandonment are very real; I have experienced these injustices already, albeit to a far lesser degree than more vulnerable disabled folks, with whom I am finally starting to build solidarity after plenty of self-pity and despair.

Fear #3: Feeling Like I’m a Horrible Burden

Meanwhile, there is also the fear of being burdensome and overwhelming to those who are tasked with providing the care I need, which another young and traumatized part of me is deeply fixated on. She had to learn how to downplay her needs on a daily basis so as not to be completely rejected or punished by her so-called caregivers, who were entirely incapable of caring for themselves, much less for her or her siblings. How could she now start to accept the fact that she often can’t cook for herself, or make it to her medical appointments on her own, or provide financial contributions to the family unit?

It’s absolutely shrouded in the shame messaging I heard from my parents repeatedly, the shame messaging of capitalist white supremacy and puritanical religiosity (both of which are cults). Those who cannot earn through labor are wholly unworthy, degenerate even. My mom still espouses this ideology to this day, although gratefully not to my face, for I have not allowed her to contact me in almost six years. My father died in a crumbling Medicare facility believing that he had failed us because he did not earn enough money, and my mom tried to reify this by telling me it was his fault that he found himself fading with dementia in such a dilapidated environment, one that was in complete lockdown because of COVID. These beliefs and words continue to haunt me, despite all I’ve done in therapy to let them go.

Fear #4: Myself and My Conditioning

There is, of course, the fear of my own behavior, my own manifestation of these toxic narratives. I’m petrified by how hard I STILL push myself to do “normal” things, to find ways to earn just enough money to get by (approx. $1800 a month, my average for the past 7 years), and to go on masking the pain and grief and anger that’s always right at the surface. I push myself to work on creative projects I care about, to tend to my household, to stay in touch with people in my community, to move my body outside for fresh air and connection to the land, to focus on others and their care needs first and foremost.

I’m afraid of myself because I push my body until I collapse in a systemic spasm that forces me to crawl into bed like a wounded animal. (To be clear, mostly I do this to myself because all I want in this life is to tend to a garden!!!! A little ecosystem that supports plant and pollinator and microbial-fungal life and creature life and human life. And yet it often seems that only rich people and the able-bodied get to have thriving gardens. Fuckin’ hell.)

I don’t want to be this way. I don’t want to martyr myself and then cry about it. I’ve seen this kind of fake-humble self-sacrifice destroy relationships and entire community spaces, including the farm I used to love and want to be part of. It’s an unwillingness to accept limitations, to be comfortable with discomfort, to relinquish control, to take accountability for our actions and ask for help in meeting our needs. It’s an aversion to actually acknowledging our inherent, vulnerable entanglements, our inevitable decay. It’s a primary outcome of ableist white supremacy, which I will continue to dissect in a moment.

Fear #5: Medications, Their Presence or Absence

Alas, I haven’t felt like myself ever since I started taking pharmaceutical medications to cope with (and ultimately ignore) my symptoms. A frazzled mediator part of me says it’s perfectly okay to seek relief, while an exile feels constant shame for needing drugs, and an inner critic who sounds just like my mother is incessantly judging how much I’m taking or what type. (Oh, the stigma.) Another protective part is frozen and petrified by the fact that I am building a tolerance to the meds, and the pain is getting louder, which means that I either need stronger meds or I have to figure out how to survive without them.

If I take stronger meds, I will inevitably become dependent on opioids because they make the pain louder and then you are trapped in the cyclone. I am all too aware of what that looks like and I can certainly try to imagine what it would feel like. And this is perhaps my worst nightmare. Despite my best efforts, it seems the medical team I’ve assembled is only partially capable of helping me to address this fear while also offering viable treatment alternatives that are actually effective. But of course, “Western medicine” is corrupt and unwilling to meaningfully engage with the epidemic of chronic pain. Meanwhile, the trauma-informed treatment I need is completely outside of my budget. Apparently poor people don’t deserving ongoing care that is patient-led and actually healing.

Then, there is such fear of what would happen if I stopped trying to medicate the pain away. I would have to go back to feeling it all, and somehow there’s much more than there used to be. Or I’d go completely insane trying to distance myself from it in other ways. I don’t want to feel trapped in my body and yet I don’t know to live in it with kindness. The only motivation I have for being okay is so that I can show love and care to others. If I didn’t have such an intense drive to be present for my loved ones and the earth itself, I would cease to exist.

me & my perfect angel, Enoki.

Fear #6: Disability During Doomsday hahahah

I am so. fucking. scared of being bedbound and disabled during climate collapse. I picture myself being completely immobilized while forest fires rage around me, or while folks are sprayed with tear gas for trying to access food or water, or while vulnerable people especially people of color and queer folks and other disabled folks are locked up and killed and discarded by the State because they are deemed undeserving of life by the very same supremacist violence that is intent on extracting every last molecule of the gifts we’ve been given on this planet, even if it means we all perish. What if I am powerless to fight back? Too debilitated to put my body on the line to protect my loved ones? Too immobilized to contribute to food security, or disaster recovery, or community defense?

It’s not so much a matter of whether my needs will be met; I’m used to having my needs only partially met or sporadically met or just unmet in general. I could go hungry for a day and a half and it wouldn’t feel too unfamiliar to me; I’ve been subsisting on an average of 700 calories a day for almost two years now. The cost of groceries has revived my childhood compulsion to skip meals so that there’s more to go around before it runs out. And, anyway, ever since I developed IBS, the kinds of food I can afford are typically the ones that made me sick in the first place, because again, poor and sick and disabled people don’t deserve food that wasn’t sprayed with toxins; we don’t deserve to be well. According to the dominant culture, we made ourselves this way; we are individually responsible for our illnesses. It’s certainly not the responsibility of the fascist capitalist death machine that wants to use cyanide bombs populations of wild animals, or is destroying entire waterways with petroleum byproducts and microplastics, or enslaving migrants who have been stripped of their human rights, or, instead of funding universal healthcare with our plentiful tax dollars, choosing to bankroll illegal armed settlements in the West Bank where vigilantes can club a Palestinian elder over the head and destroy ancestral olive groves. Nahhhh this isn’t making people sick at all.

It’s not simply the decreasing possibility of survivability that scares me. It’s about whether I could tolerate being so needy in a time of collective crisis. And this is where I feel disgusted with myself—weak, selfish, pitiful. Would I question another disabled person’s right to adequate care? Never. But it’s me were talking about, and I still have fucked-up trauma brain, so I don’t deserve to need so much help. I have to fight tooth and nail if I want to keep living while everything around us is dying. Even if it means my body disintegrates. Sounds familiar, doesn’t it?

I have to name these fears in order to face them. I hear myself while reading this over, and a part of me feels absolutely ridiculous for subscribing to the very same fears that I so palpably reject when I see them fueling chaos “elsewhere.” And yet! I would be lying through my teeth if I denied the presence of these emotions, and that would get me nowhere at all.

Becoming a Traitor to all This Nonsensical Violence

I feel so much anger about white supremacy, how it’s ravaging the planet and making life untenable for the global majority, the ways it completely fucked up my entire family and stripped emotional accountability and tolerance of discomfort from practically every white family anywhere. I see it being used to justify genocide after genocide, and even when Palestinian genocide is live-streamed it becomes more and more normalized because whiteness feeds on fear and denial. I hate how it has destroyed many of my friendships, not to mention the ways it continues to poison my heart and mind, and the ways I’ve let it. It’s fueling climate collapse, folks in the Global South already know how present the consequences are, and we get to continue on having access to shelter and food and energy and shit we definitely don’t need while non-white folks are put to death by the machine. Combined with end-stage capitalism it’s the most insidious force on the planet and I keep urging myself and my loved ones to imagine a world without it, even if it’s a world in another galaxy we could strive to emulate, Star-Trek style; a world where supremacy of any kind has never been considered, not even for a moment, or where it was considered and rejected because of shared communal values which allow all species to thrive as an interconnected whole of life and death and rebirth.

Perhaps that could be the co-created kin-centric ethos of our planet someday. I know I will not be around to see it, but I hope that I can be part of the conscious, collective body of decay and regeneration that ushers it in. Maybe eventually I will be satisfied with my role as poet, as mycelium whisperer, as emotional and spiritual guide who listens to her creature kin and tries her best to translate their messages, in bed, for the benefit of all beings, and in reverence of the miracle of life in all its forms, disabled and strange and elusive and unpredictable, here on this One Earth at this profoundly unsettling moment in the fabric of spacetime.

I suppose we’ll see.

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