Comments on: Things that make my life easier

By: three rivers fog » Things That Make My Life Easier, A Reintroduction (Part 1 of 3)

Wed, 18 Aug 2010 23:26:58 +0000

[...] A long time ago, I decided to start up a series. I lacked a catchy title, so I went with the mere truth: Things That Make My Life Easier. [...]

By: Jeffrey

Jeffrey — Sat, 02 Aug 2008 08:48:09 +0000

Wow. I’ve been dealing with fibromyalgia (though milder than yours), along with epilepsy and spinal cord defects, almost as long as you have–I was also diagnosed when I was 12, 8 years ago–and I can see myself in your place. I’ve been lucky enough to have family with similar invisible disabilities (so they believe me when I say I’m too tired or too sore to perform “normally”), and teachers and professors that are willing to extend timelines, tutor me when I’m well enough, and forgive absences.

My most useful tool has been the computer. I get my healthcare from Kaiser Permanente, and while the physicians are excellent, they are often reluctant to treat unless I come armed with information about options. I’ve also gotten several jobs that let me work from my dorm, in bed or in an ergonomic chair, when I can’t make it to the office. Then there’s the fact that I can email my doctor to get a quick prescription for a stronger pain killer than normal if I need it, without taking the time (or money) on an appointment. It also lets me connect with people like you who are experiencing the same thing, to convince myself that I’m not crazy, and I’m not just overreacting to pain.

By: denelian

denelian — Tue, 29 Jul 2008 05:19:31 +0000

i am (of course) here from feministe.

and i think you are writing my story.

it makes me weep to find another person who lives in my hell. i would like to talk to you privately about it. you can email me. we might have tips or whatever… but mostly, i just had surgery on my hip and i need to talk to someone else who LIVES with this, so that i can see that it can be done. if that makes sense and isn’t too great of an imposition?

By: Feministe » Things that make my life easier

Feministe » Things that make my life easier — Tue, 29 Jul 2008 01:27:23 +0000

[...] am still accepting suggestions for a catchier title for this series: introduction here and first entry [...]

By: lauredhel

lauredhel — Wed, 16 Jul 2008 12:32:42 +0000

I weep for your twelve-year-old self, so lost.

I’ve written in passing before about the fact that the pain I felt didn’t register as pain, because, again: I was a normal child, so what I felt must have been normal.

Oh, this is an interesting area to explore. This isn’t the same thing, but I see a resonance – I have high myopia, and have had it my whole life. It wasn’t diagnosed straight away, because I figured it was normal, and found ways around it. And those ways included things like _memorising every word the teacher said_ as she wrote it on the board, because I couldn’t see anything. I didn’t play sports; I just saw myself as “not a sporty person”, and I read books a lot. Always had my nose stuck in a book, because I could see them.
And I passed eye tests in grade one, because they were tests, and tests were things you were supposed to try to pass. I clearly remember squinting and squiting at the chart with the Es facing all in different directions, and pointing my finger in the correct directions. I had absolutely no idea that anything was “wrong” with me, because I didn’t really have a concept of stuff going wrong with my body in that way. It just was what it was. I didn’t know that there were assistive devices that could make my life so much better – that sort of thing didn’t apply to me.
And that was for a problem that was very easily measured and solved, and not at all “controversial” or complicated.
There are some really good things about kids with disabilities feeling as though they are normal, and getting through the day however they can just like everybody else does. But there is this darker flipside of that, and that’s that if you don’t know that accommodations and/or assistive devices can help you, you’re never going to be able to access them.

lauredhels last blog post..“I looked into the blacks of his eyes”? Big Brother 10