hi,
switching over to substack bc tinyletter … ? deleted my account1 ?
anyway. december now. i hope you’ve all been doing ok. more than we can ask for these days, right? it’s not a particularly bright letter so cw for: illness from here on out.
the year has been one health issue after the other, and the last few months have been especially rough for me. i contracted a severe infection from a (deadly) superbug in september that absolutely shredded my gut, and have spent the last couple months recovering. i’m still recovering. i’ve had to change my lifestyle, alter my diet completely, take time off work, quit a job that required me to be in-person, cancel being with family or friends. recently, i’ve lacked the ability to plan for the future due to not knowing if i’d be able to navigate certain plans. i’ve felt betrayed by my body, even though i know very well that it’s not my fault my dietary choices have dwindled to a few options that i can still digest, or that i’m in constant pain, frequently nauseous, and so easily fatigued by even a walk around the block. but i’m still feeling frustrated that i can’t do anything more than what i’m currently doing to take care of myself.
for me right now, being “healthy” means working around things that bring me pain and if that means a few days in a row spent mostly in bed, then we accept that. healthy does not equate to being active and eating certain foods. healthy is what keeps me alive and low-pain right now.
dealing with this has also brought me some clarity into what good care looks like and who in my circle shows up for chronic illness/disability— who pays lip service but doesn’t show it in their everyday, who cultivates environments where folks may feel comfortable sharing what they are going through. the pandemic in general has been clarifying for who shows that they act in their everyday life in a way that shows that they value chronically ill and disabled people’s lives.
i assume my immune system is shot by the fact that i’ve had to essentially re-build my entire gut flora from scratch (see: the role that gut flora have in your immune system)— that on top of having asthma, cptsd, immune dysfunction, etc… for someone like me, it’s meaningful to me if a friend wants to meet up, that they are making sure they act accordingly in a way that does not endanger my life (for me, this could look like not engaging in high-risk activities, both of us being tested before meeting up, offering outdoor options, for as long as this feels necessary to me. this is also flexible and subject to change depending on many factors. some people have required this level of care before the pandemic existed. in the future, offering online options to join or asking what precautions would be necessary if you’d like to pay a friend a visit — whether or not they’ve shared with you about their health status— could be so appreciated). to me, this means they value my friendship and life.
i haven’t felt strong for getting through this shit, at all. i haven’t felt that i’m recovering even, because so many days were spent being so, so angry with my own body for being in pain, for what may be several months or potentially the rest of my life. recovery(?) may not even be the correct word if i experience symptoms chronically. as i try to show myself care, knowing that i’ve been through so much, i also am allowing myself to refer to myself as someone who is sick/has invisible illnesses/disabled (still working through these). i may have always been sick, having actually had multiple chronic health conditions since childhood, but i don’t think i’ve always let myself fall under these labels, in part for fear of others’ ableism and how that would affect me (admittedly some internalized ableism too), and in part for fear that i was not ill/disabled ‘enough’ (i am). it’s true that i am/was able to move about different parts of this world with a lot of ease. it’s also true that i also have a lot of difficulty in other areas. i think i’m giving myself permission to ask for accommodation a little more easily (but i think asking for things is something i’ve had difficulty with for being parentified so young. that’s for another time though). though i was angry with myself i am also understanding that a cure, being “normal,” is not the goal. i cannot stay mad at what isn’t provided the resources to simply exist with ease in a truly inaccessible world. leah lakshmi piepzna-samarasinha writes:
“Mainstream ideas of “healing” deeply believe in ableist ideas that you’re either sick or well, fixed or broken, and that nobody would want to be in a disabled or sick or mad bodymind.”
assigned reading aka an offering for you:
care work: dreaming disability justice by leah lakshmi piepzna-samarasinha
“Care Work is a mapping of access as radical love, a celebration of the work that sick and disabled queer/people of colour are doing to find each other and to build power and community, and a toolkit for everyone who wants to build radically resilient, sustainable communities of liberation where no one is left behind.”
overall, i’m feeling somewhat better. not every day, but on more days than before. i also know that i’m susceptible to reinfection at basically any time, and that scares me. but i don’t want your advice unless you’ve been here in my (exact) shoes, and i ESPECIALLY don’t want to hear any “but what about probiotics!” “have you tried x for pain?” “have you gone to a GI/doctor?” unless i explicitly ask your advice, assume i obviously do NOT want to be in pain and have already been working full-time to get myself to a better place and have researched and tried many, many, many things. i understand it comes from a place of care, but immediately no. do not pass go.
i hope you know that i am not well but i am doing my best these days. i hope you know that honestly, most of us are one injury/illness away from also becoming disabled or chronically ill, if simply by aging and if not already, and perhaps one day to be sick/disabled will be seen more as a transition of sorts that we understand and care for more collectively, than an ableist fear to hold (i am begging you to read care work). i hope you work towards a more accessible world and politic in your life.
mostly, i hope you are ok. xx
yours from the bed,
christina
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