In a recent yoga class, while leading us through a
particularly challenging sequence, the instructor told us to "let go of
everything you do not need, right here, in this moment." I knew what she
was talking about. I've done a lot of that kind of letting go in my life.
When I was 15 I was diagnosed with a gastrointestinal
disease called Ulcerative Colitis. It’s not that uncommon (about 1 in 300
people have it), so you’ve probably heard of it. Mostly, my disease is manageable,
and I’ve had 25 years of practice at coping with it. While nowadays I only have
bad episodes a couple times a year, for a good 10+ years it was something I
dealt with constantly – either the disease itself, or the side effects of one
or another medication. As I’ve dealt with a really severe flare up this month,
I’ve remembered what that was like, and I’ve seen myself coping in the same way
I always have - I do as my yoga teacher suggested and “let go of everything I do not need, right here, in this
moment.” I’ve realized that this practice of letting go not only of that which
does not serve me, but that which I do not absolutely REQUIRE, is something I
do all the time now, in general. And that maybe that's not the best thing for all the time.
I am realizing now how much having this chronic illness has
contributed to how I interact with the world. Why am I writing about this in a
forum intended for kinky people? Because
life with this disease has helped to re-shape me from who I was into who I am,
and who I am affects how I kink. Also, I’ve not spoken about this to hardly
anyone in the kink community ever, for reasons I’ll get into in a sec, and I
think I need to do this now, as a way of unburdening myself a little. So here
goes.
I don’t know what it’s like for other people with unseen
physical diseases, but I am above all embarrassed about my disease. For one
thing, I like to perceive myself as a strong person, and I like others to
perceive me that way too, and having a disease which sometimes totally cripples
me doesn’t really boost that perception. I know I’m strong for how I’ve handled
myself, but other people might not perceive it that way. For another (and much
more significant) thing, the symptoms of my disease are things which are not generally
talked about in polite society. We are taught to hide what we do on the toilet,
you know? So yeah, it’s hard to explain to people why I’m running to the
bathroom all the time, or why I can’t suspend you because I can’t guarantee I
won’t have to leave for 10 minutes all of a sudden, or why I turned around and
went home after getting all the way to the club because I couldn’t find a
bathroom in time and had to go crouch behind a dumpster in an alley or something and now I feel awful
and have ruined my outfit.
Feeling embarrassed about my circumstance has led me to be
pretty withdrawn about my personal nuances, in general. I clam up and it’s hard
for me to talk about my weaknesses around new people. But then when I feel like
I can trust someone to understand, I let it all out in a big ol’ word vomit and
probably scare people off because they think I’m slightly unhinged. I may
actually be slightly unhinged by this. My embarrassment has led me to feel a need for control over my circumstances that I didn't used to feel. It's part of why I am more a rigger than a bottom, now.
In the kink community in particular, I’ve also noticed that
I feel lesser than with this particular illness. Why? A lot of it is because
of butt stuff. Butt stuff is really, really bad for me. I know
this because I have tried and it is not a good idea at all. I now basically
have a doctor’s note that says “no butt stuff.” But it’s so popular! It’s
encouraged so widely! Everyone wants to have things in their butt and/or to put
their things in a partner’s butt, and I can’t participate in the receiving end
of that. It’s such a prevalent desire among kinky people, and so important to
so many of them, and so widely talked about, that I feel I am an undesirable
partner for lots of folks I’d like to have sexytimes with. And therefore I sort of feel like an undesirable person, in a community where so much of a person's perceived worth comes from their worth as a potential partner. And then there’s
that whole previously mentioned issue about not really being able to control my
bowels sometimes. It’s hard to gauge whether someone is going to be cool when I
say “sometimes when I orgasm really hard I become incontinent” or whether they’ll
deal with it like my college boyfriend did the first time it happened, by being so horrified that he yelled at me and left me crying in the
shower. And no, that wasn’t a consensual humiliation scene.
Feeling lesser than because of my condition has led me to be
very, very shy about pursuing new sexual partners, especially male sexual
partners. I don’t want to become invested in liking someone only to find out
that I’m undesirable to them because of my physical limitations. I’m shy, so I
feel left out. But remember, I’m someone who wants to be seen as strong. So
like most people who are shy but don’t want to be seen as shy, I just put up a
wall that makes me seem unapproachable, rather than afraid to approach people.
Finally, my disease can be time-consuming, energy-consuming,
and physically, mentally, and emotionally taxing. When I’m sick, I can’t do
much except be sick. Getting to work in the morning, eating meals, getting home,
keeping the house clean, interacting with people – these are sometimes things I don’t have enough spoons
to do. So I do that thing of letting go of all the things I do not need right
then, in that moment, to get through to the next moment. It turns out I can and do let go of everything except: my breath, my body awareness that little
voice in my head that tells me I can do this because I have no other choice,
and my dignity. A lesser - but still very important - requirement is company from
people who I really trust to care for me, and around whom I feel secure being
fragile. Apart from those things, I let it all go. The problem is, because I’ve
spent so much time having to let go of what I don’t absolutely need “right
now” that I don’t know how to invite in the things I really need "not necessarily right now" for my happiness, like having close friends and being good to them, and
being able to relax around people in general. I need to have a larger support
network than the extremely small handful of people I rely on when I’m really
sick. It’s not fair to them and it’s not healthy for me.
This has been long and if you’ve read to here I think you’re
neat. I don’t have a conclusion other than to say it’s been good to realize
these things and get them down on “paper” and into the world where they’re not
just held inside me. Maybe I should wrap all my realizations up in a nice bow
here but I’m not going to. I hope maybe somebody who is interested in having it
has a better understanding of what’s below the surface.
