Dear Healthcare Provider:

I just wanted to thank you for being kind and generous with me today, your difficult patient who didn’t want to talk much and tried to dictate their own care and frowned during the entire appointment, feeling exposed, hurt, scared, worried about cost and humiliation.

See for me, being sick or injured, as a trans person, as a person underinsured by medicaid, as a person living under the dead limb of student debt in an economic storm–sick or injured is the most vulnerable place I can be. The scariest place I know is up on that examining table, every inch of skin I expose to you during our medical encounter a mile of inroads I have given you. I am weary, I am wary. I am taut to snap back if you show yourself a trap, a bully with a stethoscope, a critic on call.

Thank you for intuiting that I was not grumpy for the sake of grumpy, but worried about cost, slipping me a much-needed supply for my healing that would have been a squeeze in my budget, a budget already stretched thin on imagined money, loans and credit cards. I am up to the neck in debt and forever climbing, even while knowing that some day soon there are medical expenses coming that should be (but won’t be) covered by insurance, and that those things will cost me more than a whole year of college, more than a third of my annual income in my yet-to-entered field, my yet-to-be-gotten job.

Thank you for intuiting that I was not being stoic for machismo, but stoic because the masculinity I was socialized to does not go to the doctor til that dying breath, and while I am working on cowboying down and learning that having my masculinity recognized in the world does not mean self-neglect, I live with my father in my head calling every injury and illness overreacting, so if I am unprepared to tell you how and when I hurt, it is because there is a devil on my shoulder telling me self doubt is the best reaction to somatic pain. It is a long road, and my heart is only beginning to learn how to listen to the rest of my body.

I work in healthcare because of how hard it is for me to access it. So thank you for taking down the gate for an hour, so I too might have that thing we all need, care for the carer.

Respectfully,
A trans nurse

the stalled van

05/16/2012

free-write about sex, PTSD, relationships.

this morning i watched a minivan stall in the middle of a busy arterial at rush hour after stopping abruptly to avoid a cyclist riding thru a crosswalk. i feel like this a lot lately, the stalled van in rush hour traffic.

P. is hard to bring into front and center focus sometimes, instead he installs himself at the sides of rooms, a tall, quite presence, warm and now almost-familiar shape. i am not so good at being present in those rooms. i find myself made nervous by his calm quietude, like i should be doing something every minute we spend together to appease him, or else i will be a disappointment to the date we have been looking forwards to for a week or few. my anxiety feels misplaced most of the time. if i slow down to look at him he nearly always looks pleased simply to be sharing my company. he is a person of few words, but physically fairly expressive, particularly of pleasure.

on our most recent date we met in the late afternoon. ordinarily i attempt not to stack dates on top of one another, but sometimes schedules collude against this guideline (i frequently don’t see either of my steadies for a couple of weeks) and so i had a date with J. the night before. when i fail to stagger my dates i have to make at least a few hours somewhere to decompress, balance NRE (New Relationship Energy for you more monogamish folks) and my own needs (cooking, cleaning, practicing, writing, etc) against the staidness of P and i’s longer term sexual friendship. we are lovers but not partners. he is married to his partner of around a decade, and sometimes we double date with her and her other lover(s). our dalliances often involve bikes, the passion we most have in common (tho nearby are combining these exploits with good food and beer), although when my inflammation stuff precludes cycling we fall back on quiet working-on-stuff/reading time. i hate thinking of how many dates i’ve had to cancel or plans altered to accommodate my sick body and overwrought brain: stress-cold after stress-cold, bouts of inflammation brought on by continual overextension and anxiety, trips i have missed to cope with self-blame and grief. often now, i stutter and stop at any kind of sexual encounter, even kissing, especially when i can feel his eagerness immediately–suddenly i will realize i can’t feel anything below my waist, or uncertain of whether i will be able to have sex ‘to completion’ this time (what does that even mean?!), or my body hurts too much to be in it but i get so embarrassed of having to say that aloud–especially after i’ve had to reschedule and re-plan dates for weeks to even make it in the same room as him physically. my desire is doused by my inability to exist in the same room as P., faithful and kind creature who seems to only want the best for all parties, swallows his disappointment over and over again, even when i imagine it must vex his patience.

i am a van stuck in the middle of an intersection, stalled just before slamming into a cyclist. the cyclist waves me on but my hands are shaking too much to turn the key in the ignition properly, the engine sputters and sputters before finally spluttering to life. i roll on, disappointed at being given so much that i can not take. it’s like being starving at a banquet but with one’s jaw wired shut. i know he’d touch me, if i could tell him how. has. he has. will again? that’s the question, always, not just with him but anyone i date.

okay, but. so i have this plan: the next time the van stalls in the middle of the intersection, i’m gonna get out of the van and take a walk around the block. i don’t need to get thru that intersection until i’m ready, and it’s okay to take another route entirely. my sexuality is not really beholden to anyone, no matter how fucking tolerant they have been of my trauma shit and other quirks. my gender socialization is such that i am like the fight-or-flight hostess, constantly hustling to immediately alleviate conflicts where other peoples’ needs aren’t being met. but i lose track of my own.

what do i want? what do i need? simple questions, but i don’t trust anyone anymore, don’t trust myself. will i ever stop chastising myself for the way things ended with A.? will i ever stop being angry? not at her–just at what happened, how. shit with the manarchist, leaving ~e (goddammit, that was two fucking years ago!), so on. it’s like there’s a backlog of processing, and now all these new things are happening. and i’m tired of being strung out on processing relationships–i want to do the work of my life, writing, playing music, go back to school without getting distracted by emotional turbulence. i keep thinking that maybe polyamory is too much for me, especially the way i’ve done it in the past. no new dates policy is painful at times, but it also feels so fucking wise. i like the way that the relationships i’m in right now are taking shape. furthermore, i like the way that my friendships are deepening, as well.

i guess i need to take more walks, to start with. HORFFF.

sick again. not sick like ‘i have a cold in the middle of the fucking summer’, but sick like whole body pain.

keep hoping i will find the magic bullet. some herb, some dietary change, some new exercise, or hell! even some medication–that will keep my body from doing this without introducing intolerable new symptoms in the process. tired of hearing people with “well” bodies complaining about sick and/or disabled people who ask for their bodies and needs to be accommodated occasionally. or claiming that people are just “being neurotic” and that their illnesses are not real. “prove it!” they say.

***

Okay, let’s start with this–not the only study of its type or the only study with similar conclusions, by any means.

In women with chronic pain, self-reported childhood maltreatment was associated with higher diurnal cortisol levels. These results add to the evidence that abuse in childhood can induce long-term changes in hypothalamic-pituitary-adrenocortical activity. They further underscore the importance of evaluating childhood maltreatment in fibromyalgia and other chronic pain conditions.

In non-sciency terms: there is growing scientific evidence that folks (esp. female-assigned folks) who experience trauma also experience significant alteration to their hormone levels that can contribute to various chronic pain conditions like fibromyalgia or osteoarthritis (to name a few).

Interestingly, another recent study showed a correlation between being the child of a survivor of extreme trauma and having heightened levels of  cortisol (think of it like a stress hormone).  <waves> Yup, that’s likely folks like me, who come from extended legacies of trauma.

I find this line of research particularly fascinating when I place it in context with the anecdotal evidence that I am surrounded by in daily life. Approximately 80% of my friends, acquaintances, and family members who experience chronic pain are also survivors of some kind of abuse.  But abuse and other trauma are incredibly common experiences. Heartbreakingly common. Devastatingly common. And it’s not like we sit around confessing our struggles with chronic pain or abuse/trauma histories all the time–these are things that a lot of people are socialized to feel deep shame about, and a need to conceal. None of this is quantifiable, but it sure as hell feels like correlative evidence to me, anecdotal or not.

However. As any junior high school chemistry student can tell you, correlation is not causation! But it does give me pause, a moment to stop and say hrm, that sure is interesting.

And it also gives credence to the various theories and schools of thought that embody somatics. The most familiar concept of somatics to me is the idea that the mind uses the body to store trauma, and that those experiences can be intentionally or unintentionally unlocked later via exercise or movement. Like this, see?

What is the legacy of trauma? How does this affect my body or influence the ways that I am in pain now?

Wake up to my alarm, the irritating cell phone boogie. Everything is stiff and my face feels kind of swollen like I’ve been crying in my sleep again. Have I? Hope not. My sinuses are swollen but it’s probably just the dregs of that cold, summer-spring allergies, dust.

The neighbors woke me up like they usually do, just as I was getting to sleep, so I slept downstairs with my housemate/sweetheart. I think: I love living in a neighborhood with 24/7 streetlife because it makes it feel safer, but I hate living in a neighborhood with 24/7 streetlife because it makes it loud when I want it quiet. I think: do these people have jobs? If they do, they obviously are not jobs like mine (that require early mornings and early nights). Then I think: I live in a neighborhood that is predominantly people of color, and people of color are experiencing unemployment at a significantly higher rate than the “general” (this is the word the news uses, why?) aka “white” population. I am glad to hear them laughing, whatever the case.

These are the things I am thinking as I hobble up the stairs, trying to go easy on my bad hip. Most people don’t know that I’m sick. I don’t like telling them. But I have noticed a pattern to my friendships lately, that the people I am closest to are also people with chronic ailments or long-term injuries or mental illness diagnoses or trauma or (more likely) some combination of this thing. I sometimes think that truly able-bodied, well-adjusted, 100% healthy people free of trauma or other long-term injuries are a myth, that each of us (our bodies, our selves) have these individual quirks that make us us, and sometimes make living in our bodies all the time a challenge.

I have this weird pseudo-privilege of looking well, appearing well, being well–except for when I’m not. I look socially acceptable: slender, tan but not readily apparent as a person of mixed race, etc. Okay, I’m not gender-conforming, but in my city that is still pretty normal and because I’m “pretty” people tend to overlook that. I’m lucky to have this amount of body privilege, and I know that.

But. Looking well doesn’t mean I am well, which leads to problems in various places: the bus, the doctor’s office, friendships, work. My mother has had this problem her whole life, so I shouldn’t be surprised, but it took me a long time to figure out why she had had so much trouble getting a diagnosis, or getting people around her to acknowledge her illnesses and accommodate her. Like, can’t you see that she’s sick? She can’t eat anything unless she wants to risk spending hours in the bathroom and has to use a cane, for chrissakes! Nope. She’s too pretty, too female (did you know that all women are hypochondriacs and couldn’t possibly know anything about their bodies?!), too capable, too much of a well-rounded human being–to be sick.

Because people with chronic ailments and disabilities are apparently supposed to fade into the background and become one-dimensional. We are not supposed to inflict our challenges upon anyone else unless they specifically offer to “be there” for us (you know, the “support friend”, aka Fucking Rad Allies). Like, how dare you ask if this event is accessible? Accessibility is haaaard! You’re right, it is! Why is that? Ask yourself: what does a sick/disabled/injured person look like? What are their needs? What are they capable of?

I am a mainstay of the bike community. I frequently put on >75 miles a week. On Saturday I placed 6th in a race where I competed with 45 other people. Today I barely made it to work because the inflammation was so bad. Tomorrow I will probably be back in the saddle because staying still makes the inflammation worse.

The next time you see me (or the next person you see) I want you to try this on for size: this is what a sick person looks like. this is what a disabled person looks like. this is what a survivor of trauma looks like. Because you can’t tell just by looking at us, who we are, what we are or aren’t capable of.

Love and light,

RD