“well, you look good.”

February 10, 2015

why, thank you, new medical specialist number three in 2015.

it’s interesting how desperation has the potential to suddenly adapt and transform itself into armor. it’s like the feelings that accompany every step leading up to the point where one knows they could be easily identified as “desperate,” those feels create a patina. that weathering and aging, it fucking hurts. it really does. because every moment we decide to try one more time, one new thing; whenever there is another hope had, another fuck given, we have to be vulnerable somewhere. maybe everywhere. there are so few easy answers and so those layers of vulnerable-to-wound-to-scab-to-scar-to-freckles-to-memory, they all add up into this patina, the armor, this quiet and subtle storying that speaks our histories in the most powerful way possible. it protects the parts of us that have to stay intact.

it’s is not impregnable. the protection of our stories, our voices, our being through all of these moments is valuable, priceless really, but it comes with a cost. it comes with memory. memory means that pieces of me actually experience it all again when i say to New Doctor, “i literally did not know if i could survive the blistering,” i feel echoes of my skin on fire and the still air around me burning my body. i know that the words i’m using are not making it past the distance between me, the messy table and this New Doctor. my hands are running along the metal edge of my medical binder, seeking comfort in lab sheets and my own statistics. i use plain language with her. i cannot bring myself to verbally tell this woman what i have gone through because she cannot possibly understand. i want that to be okay. i want for it to not matter to me, but it does. if she understood, it would change something. it would create a kind of empathy that would be exhausting for practitioners to have… but wouldn’t it be incredible if more of them did?

but most of the specialists i see, we’re not having that kind of shared experience. we’re both seeing dollar signs we don’t like very much. they see a hot medical mess and i see someone who doesn’t know how to help me and doesn’t have the time to try. it’s understandable. it sucks, but i get it. being sick is my full-time job and still, i would fire me in a heart beat. i go off the job all the time. and i mean, like, all. the. time. it’s not like i can just stop feeling crappy, so when i say i quit all the time, i mean that i give up the navigational reins for a minute or two. i can’t keep pace with myself. i can only binge do this. so however often i have to and i can, i buck up, research until my brain is completely socially dysfunctional, make appointments, research more, see doctors, pay more money than i could ever possibly have, get labs, get more labs, switch this and that, add this and that, pay this and that, see doctor, do research, repeat.

and then i collapse into a treatment.

that’s ridiculous. that previous, standalone sentence, “and then i collapse into a treatment.” it is, perhaps, one of my more significant/problematic issues. if i enter treatment cycles completely depleted, what do i think i’m fighting with?

to my credit, this round i am strategically gathering information. i’ve made a contractor analogy to verbally trot this healthcare binge cycle out to my support people, or anyone i spend any time with because, whatever, i talk about this shit. it’s my life and it’s often all i have to offer up. i try to make it the least depressing possible, but i don’t conversationally avoid my own truth. yes, i feel like a downer. so many restrictions have changed how i move through the world. anything could set my system off. i’m that person at any restaurant. this feels uncomfortable, being someone who has special needs and has to voice them, but growing a place of tolerance within myself to create safer spaces is critical. it’s vital to me getting well.

anyway, i’ve found that this construction/renovation analogy works best. i’m the fucking contractor. i can’t know everything, but i’ve got to know basics in as many areas as i possibly can in order to effectively do my job. i have to be objective, which is an almost, if not actually impossible, ask. i am trying to build new priorities into my job, like getting a massage once a month, in my neighborhood so i don’t have to travel to do it. i’m trying to work through the emotional pains of a life of chronic illness. i go to therapy every week. i hear my repetitive self. i see the patterns. i want to change those patterns, neurologically that’s completely possible. keep learning. put brain en mode. i enrolled in pottery classes at a local college. i’m writing in a notebook again. i’m painting, drawing and cutting a mixed media piece for a friend. i am making plans and trying so hard to get the dates right and get the days correct. i’m trying so hard to show up and to just be present. i’m engaging in more arenas of my life and that’s both exhausting and good for me.

sometimes i forget i’m human. i feel unteachable sometimes. i feel alone and loved and i loathe the palpable desperation that i often feel to get well. when i have these moments where it feels like i’m doing everything i possibly can do to propel myself forward, when i am doing the very fucking best that i can do, it’s as if those desperate feelings have congealed into something that i can just accept, something that makes acceptance possible. just in this moment. for just this second, i can breathe (though not always deeply or easily) and i can just see why. not how. why. i know why i am. these moments, however many of them i can have, are the gifts that make survival feel not only possible, but totally worth it.

and that’s a lot fucking better than season nine of a show that i will not publicly name.


One Response to ““well, you look good.””

  1. lmulley1 said

    I was just this morning thinking that what I miss most about Facebook (taking at least February off) was your posts, my friend. So I was delighted to see your blog pop up in my inbox today! I love your writing, always have, and am always so grateful when you share it. xoxox

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: