Thursday, December 29, 2005

Poems by young people with CFIDS

I found the poems and narratives written by these young people with CFIDS both moving and honest. It's been hard enough for me to deal with CFIDS and I had time for a good fulfilled life before I got hit with it. I can't imagine getting this illness as a child and losing my childhood. I've read some horrifying accounts from as early as ten years ago of the abuse some children with CFIDS went through with their classmates who didn't know anything about the illness and weren't educated by their teachers, who didn't know about it or believe in it, too. One young teenager struggled to keep up with schoolwork, but couldn't. She told her teacher she couldn't concentrate, had no energy, was tired all of the time. One of her classmates said 'If it's that hard, why don't you just go kill yourself?'

She did.


J. Andrew Lockhart said...

very interesting --- what do you do about it? is there medicine or what?

Pris said...

There's palliative medicines that help some of the symptoms such as sleep loss or pain, but nothing relieves the neurological/cognitive symptoms or the intense fatigue. If you don't know about CFIDS , go to my website about me page. There are some links from there, too. A link to my website is to the right in my links column.

Michael Parker said...

Hi Pris. I'm quite speechless. People can be so cruel. And I'm not surprised that the teacher didn't know anything about the illness. States strip away funding to education, which limits the training our teachers need to be made aware of most anything. In all, CFIDS does indeed need to be placed more on the radar. Somehow.

Pris said...

When I got sick in 1990, NOBODY knew about this illness except for a few specialists in it, few and far between, and they were considered 'kooks' by some doctors. I won't even tell you the abusive things doctors said to me in those early years because it still upsets me to think about it. Suffice it to say, it was bad enough to lose my life as I knew it, but to be subject to redicule by these men I'd turned to to help me took me to such despair I didn't know what to do. Things are much better now. I go to a dentist, GYN, and now, the urologist, who all know about the illness, accept it, and treat me with respect. My dentist knows of my multiple med allergies and dizziness and she works around them as best she can. My GYN not only takes care of his specialty but always wants to know how I'm doing overall. And I go to a doctor who specializes in CFIDS, one who has worked at Johns Hopkins and was given a National award for work in his specialty recently. Things are much better but I still see blank faces when I mention the illness and I still have people getting impatient with me when I can't be who I used to be.

Whew didn't mean to bend your ear that much, but those years, plus people I thought were friends leaving in droves, left as much of a mark on me as the illness. Well, almost.

J.B. Rowell said...

This is terrible.

As a teacher, I wonder how her symptoms manifested themselves in the classroom and how they could be misinterpreted to be something else. When children tell me their head/stomach/whatever hurts, or they're tired and are having trouble focusing, I ask lots of questions to get at what is going on: How bad? Did you eat breakfast? What else hurts? What time did you go to sleep last night? How often does this happen? Did you tell your parents? Which brings me to my main point, where are the parents in this awful situation and why aren't they being held accountable as the teacher is? I have a little girl in my class who had a stroke over the summer and we are constantly monitoring her health and communicating with her parents - this is key - communication with home. Sorry for my rant, I get tired of the unrealistic expectations for teachers to know and fix all ills. It sounds like everyone needs more education about CFIDS, not just teachers, and I commend you for getting the facts out there Pris.

Pris said...

I know little about why the teacher or the parents didn't do more to help. It's a mystery to me, too. As we both know, there are good and bad parents and teachers. Both of my parents were educators and my mother a first grade teacher who cared, just as you did. The other first grade teacher was cruel. This isn't just my perception. She was fired not long after working there for that reason. Some parents feel helpless, too, in knowing what to do to help. Some are assertive. Some are passive. Peers can be cruel at that age and, often, no-one can stop them. I don't know if you remember the boy named Ryan who was driven out of town when he developed aids. People shunned him, painted signs on his house, etc. The family moved away where the school worked with the parents and the town, in general, to make his new home a welcome and loving one. I'm glad some people have common sense and care. Too many don't. That teacher in this instance, I feel though, should have stopped any harrassment she saw regardless of illness or whatever reason. I know you would have. I know my mother would have.