Archive for coping
Some Spoken Word…
“What’s wrong with you?” she says smirking
stoic staring
watching my broken body
slowly climbing eight cement steps
my own personal mountain
letting the heavy wooden door
slam in my face–
at my refusal to answer
“You’re too young to use a cane” he says
unfamiliar, uninvited
looking me up and down
as if assessing the damage
And I’m tired
of inaccessible buildings
nonworking elevators
and walking to
the furthest side of the building
to find the ramp.
But mostly I am tired
of you.
Of your adolescent curiosity
as you try to place me into categories
that don’t fit
Of not using the tools I need
because I can’t deal with
one more rude question
one more rude question
one more fucking rude question
posed by
you, southern sticky sweet
nice girl
concerned girl
cultured girl
charity-lovin’ débutante
but hey, your father’s brother’s mother’s
second cousin twice removed has a neighbor
who has one of those “cripple” kids
so you must really get it
But before you give me one more
tokenizing, stigmatizing
self-satisfying query
please
mind your own
mind your own
mind your own
fucking
business.
__
We did a spoken word workshop for my college poetry class. Spoken word is certainly not my forte in the world of poetry. For me, this was the result. Just thought I would share for those who are tired of explaining. Happy Monday.
Last thoughts on a school year
As I am finishing up my second year of college and preparing to transfer, I am left with a lot of mixed feelings. This last year and a half has been the most difficult for me health-wise as I’ve observed the deteriorating of muscles and tendons, of my mental clarity, and of my general sense of wellbeing. People ask me frequently what it’s like to be in pain all the time, and honestly it still baffles me. It baffles me that though I have gotten used to feeling this way, physically, I’m still not used to all the repercussions.
I have virtually lost my ability to do some of the things I was once able to do, such as climbing stairs by myself. In the event that I have to climb up or down more than two or three, I have to have someone to lean on, to balance most of my weight on, because the muscles in my legs get tight and spasm. As many who are disabled probably know by now, having to rely on others puts a person in a very vulnerable position. For me, a former significant other would hold this over my head, would shame me, would complain about how much of a burden my disability was on her.
This idea of the burdensome disabled person is not unique to relationships I’ve had, however. It’s something I have, if you’ve read my posted e-mail from disability services, felt from my school as well. It seems to be a common trend among students to be othered by their schools’ disability services offices, to be treated as if the students’ needs for accommodations are unreasonable or unwarranted or untrue or giving some sort of unfair advantage to the disabled student. Indeed my school’s inability to accommodate me, or to listen to my grievances when I’m not being accommodated, is one of the main reasons why I’m leaving–well, and then there’s the blatant classism, but that’s a story for a different post perhaps.
Any school, however, that that has demonstrated to me that it is going to allow their administrative officials say things that are insensitive and disrespectful to ability, class, race, sexual orientation, gender identity, belief, country of origin, or any other way a person identifies or is marked without repercussions is surely not getting my money next year. I’ll take my butt somewhere else, thanks!
Social absenteeism
One of the most difficult things for me in dealing with my disability is not being able to do as much as I used to. Not only that, but with my commitment to my school work, it’s difficult to make time for much else. It’s so disappointing to be invited to things and to have to tell people that I can’t because I’m behind on school work. I want to have a life outside of school work, but at this point in my life I can’t seem to do that.
It’s especially hard to explain this sentiment to others who can’t understand why I can’t go to things. Trust me, I want to go out and have fun. I just don’t have the time or the energy most days, and I’m so behind that I really can’t afford to have fun.
ButYouDon’tLookSick has an article on being a student with fibromyalgia, chronic pain, or chronic fatigue that is worth checking out not only for those of us living with the condition but also for those who know someone who does. The part about learning a language is especially interesting to me. I used to be so good at Spanish in high school. Once the fibromyalgia really hit me though, language in general has been of the utmost difficulty. Fibro fog–the term from which this blog came–has made me feel less intelligent. I can’t even remember simple words most days. One day I couldn’t think of the word “shirt”.
All this makes homework a much more drawn out process. Some days I don’t even have the energy to work on my homework at all. I guess I just wish that those of us living with these conditions could help people to understand that we’re not blowing them off, that we really just can’t do some things.
Relief
Finally, after a week from hell, I am back to blogging. I filed a complaint with the Office of Multicultural Affairs here against the way I’ve been treated by disability services, and they are going to set up some sort of a training, because evidently there have been several complaints from students about the way they’ve been treated by that office. Disability services isn’t even its own department, it’s tied with academic advising. I can’t even begin to address all the problems that are wrong with that. I know I will be gone soon, but I just really hope that things change around here.
On coping
I know it has been awhile since I’ve posted. I took my Spring Break, and it was nice to be within at least a small support system back home. I had blood drawn again at my doctor’s insistence, and they haven’t gotten all the results back, but from what they do know, they want to draw more of my blood because something is up. My little sister evidently has been complaining of pain as well, so that makes all four of the biologically related females in my family who are living with similar mysterious but vague symptoms.
It was nice though to go to a doctor who actually asked me questions about what I was experiencing and gave me the space to talk about it. So often recently, as I’ve heard from others, I’ve experienced this ridiculous paternalism from doctors who think that because I have put myself under their care that they have free reign over my body. They are free to poke my sore spots without asking, because I obviously know nothing about my condition.
I talked to a fellow disabled friend about this, as well as my able-bodied significant other. It’s so important to have a support system, to have people who will listen to you and not judge. Indeed I think it is the only way I have kept my sanity during the continued maltreatment from doctors. I’m tired of being just a number, just a file. I want to be seen as a human being, I want to take part in my care and offer the knowledge I have about MY OWN BODY.
I refuse to go back to that doctor, as I refused to go back to the doctor in Boston that made me parade around the room in my underwear, bending in uncomfortable ways, then made me lie on the examination table while she bent my legs some more and came to the conclusion that if I just took a Tylenol I’d be fine.
I’m just so glad I have the people around me to tell all this to. Maybe one day I’ll have the energy to change it.
