Chaos, dissension, control issues and cruelty

I am trying to fully quantify all that being sick has taken away from me. The progressive downward movement has been much like losing my balance on steps covered in ice as I claw at the air in a desperate attempt to catch myself. I am unable to finish college. I am unable to have a career. I am not capable of working in any degree. The dreams of what I wanted to do with my life have been smashed. I cannot get married, and I most certainly do not have the strength it takes to raise children. I am increasingly unable to take care of the trailer I rent. I am supposed to mow the grass but I dont have the strength and it makes me horribly sick faster than you can snap your fingers. If I cant take care of the property I will lose my home. But if I try to take care of the property I will lose my ability to care for myself. I can no longer eat most food, everything that I try my body ends up rejecting. I have lost over forty pounds since December without trying and have dropped from a size 14 to a size 4. My ability to communicate is slipping away. I have optic atrophy. I struggle to stand and breath and I am in the process of buying a wheelchair. Sitting up causes worsening pain.

I have had many things taken away.
But I still have the ability to speak in freedom, no matter how garbled and incoherent, no matter how slurred, never mind my shrinking vocabulary. And for that, I am grateful. Because I have lost so much, it makes this choice all the more precious. It isnt just about opinion and speaking my mind, but also about being counted. It is about that ever growing monster called invisibility which all of us know so well.

I have precious little to hold on to, and it would devastate me if someone who actually knew what it was like to become invisible, and knew the pain and despair of this illness, was to take away some of my hope. That is the essence of cruelty.

We are all grasping at maintaining some semblance of control in our lives, but allowing it to spill over and poison a place of hope, and even going so far as to bar people for various periods of time due, at the root, to power struggles, is despicable.

Comments

Maria,

This is so eloquent! I am deeply moved.

Thank you!
 
I understand that you feel that some people got treated in a rather heavy-handed fashion. I agree with that - again, though, I would note that the moderators are humans too - and that if they feel they are being abused then they may react. I would say, though, that it takes alot to make them react.

This effort is an attempt to lower the temperature on both sides; to create an environment in which the moderators do not feel embattled - and which therefore lowers the heat on the Forum participants.

The moderators are not shadowy authoritorian figures - they are CFS patients just like you - and they have feelings as well. That fact does not seem to resonate among a few posters. When you use a word like 'cruelty' I suggest that you take a look at some of the problematic posts and see what the moderators have to deal with even when they're dealing with people in a professional fashion.

This was not an issue 6 months ago; but its a very large Forum and its growing daily. If we're going to have moderation - and we are going to have moderation - then the moderators have to feel safe here. You can always contact me if you feel someone is being heavyhanded.

Everybody got pushed too far in the latest discussions - that's clear. We're not asking people not to critique the moderators - we're simply asking them to be treated politely. We ask the same thing of the moderators - that they treat people politely. That didn't always happen in the last round of discussions - I recognize that - but they're human beings too - and they were pushed far harder and longer than the forum participants they engaged with.

We're a small group of CFS patients- we're not professionals at this - we're all amateurs - and we're questioning ourselves and our ways of moderating frequently.

We are clear, though, that the moderators really have to be treated with respect. Maria, if you feel that our attempts to bring a more even tone to the Forums is simply a power struggle - that how if that's see this effort then maybe this isn't the place for you. I hope that you don't see it that way - that you recognize that we all make mistakes - the moderators included and the moderators are people too and we're trying to work out how to run these forums the best we can.
 
I stand by my words. I speak of my experience and the way things affect me. My intent is not to create more chaos, only to speak the truth as i see it. I would ask any future posters of all opinions try to bring peace in their writing. As stated above, we all know the loss of control, the pain of this disease and the frustration that goes with it. United we stand, divided we fall.
 
Maria, here is peace:
:hug::hug::hug::hug::hug:
:Sign Peace::Sign Peace::Sign Peace::Sign Peace::Sign Peace:

Maria, you are an important part of this community. You have a great sense of humor and I know you are very ill and appreciate this forum before hell cut lose. I agree that peace is the way to go, and may this place provide healing for all of us.
 
On this particular issue, I agree 100% with Cort.

I have read some of the threads & strong opinions being voiced with what I call, downright lack of respect & consideration for fellow Members, Cort (as the "Director" so to speak), and the Moderators (who have to try & interpret the posts & weigh up the "tone" and "meaning" of each word).

I believe there is a way to make one's point without being rude & nasty - to anyone, Members or Moderators.

But, what really upsets me is that once one member starts voicing their opinion with unreasonable words, many supporters jump on the bandwagon and turn the thread into an ugly war of words.

Personally, I think the Moderators do a damn fine job under really difficult circumstances. There are so few of them & they cannot possibly cover all the daily posts. They may make mistakes.

The Moderators are ill too & I believe some members forget that. With the size of this forum now, the Moderators must be exhausted trying to cover as much territory as they can AND cope with their own problems.

We are all human & none of us is perfect.

Apart from a few carers, we all have chronic illness & pain. Some of us, like me, are well enough to make some sort of life outside our illness, but even I go downhill sometimes & are unable to get out of bed, or function normally due to exhausting & excruciating pain.

Some members make mistakes also. They feel insult where I'm sure none was intended.

And words are open to different interpretation by the reader. Recently, a member picked on me, without cause. The member starting the thread, & I read over every word I said in that thread, & there was nothing that gave cause for the criticism that was aimed at me.

Wisely, the thread starter & I left the thread to quietly sink into the background.

I think there are many times that the Moderators are too lenient. While I live in a country of free speech, I try to be respectful in the written word on the internet.

We are all here to help each other & support each other (as we get very little support from the outside world).

I think everyone should be a little more mindful of what they say, and more importantly, HOW they say it.

And don't take sentences too literally. When in pain, our words are coloured by how we feel at that moment.

And the couple of times, a member has PM'd me & asked me to remove my post, I did so immediately - no questions asked, because what I wrote just came out wrong that day.

I was just thankful, that someone took the time to PM me & point out my mistake (in polite terms & a gentle, respectful way).
 
Please tell me how anyone with an ounce of humanity could read Maria's blog and only comment on the last sentence. Is that really all you see? How very sad.
 
Some people feel that they were treated in a heavy handed manner, during and after, that quite contentious thread. (in fact I think that cort agreed that this happened) A genuine apology by a member was thrown back at her with the words " a sweet apology followed by a slap!" .and this left a bad taste in the mouths of many reading those words. No one insulted me personally, nor do i remember insulting anyone else...but i read statements in that thread that will stay with me and have colored my viewpoint, unfortunately.

Suggesting to a new poster that this may NOT be the place for her, when she has just bared her soul for all of us to see, talked of her illness and her dire situation in her home, and spoken her mind as to how she sees things (a sort of "power struggle"...she hasnt even been here long enough to get to know everyone...reading that thread may HAVE looked like a struggle taking place, to her!)...imo , is NOT how "we" should be welcoming newcomers. She didnt break any rules that i can detect, in saying what was on her mind (and she did it in a most respectful way)...nor have I, but having said all this and showing HER support, will it be suggested that maybe this is not the place for me as well?

IMO, people must be given time to work this latest problem out...its not going to just evaporate and go away overnight...people will be touchy (many on both sides feel betrayed and are distrustful - some are jumpy and ready to lash out, some confused and anxious and nervous!..and some will never again be "ok" and truly comfortable here.

This is an episode that is going to take some time to move past....i hope the mood improves and any oppressive feeling dissipates as soon as possible...for all the ones who choose to stay and rely so heavily on pr as their "haven", a safe place to be....(for so many, the only one they have.) j
 
Maria I am so sorry for all the sorrow you and so many others with this terrible disease are having to deal with. I long for the day with answers. This is all taking far too long.
I do agree withVictoria in the sense that I see PR as a place where we have a lot of freedom, but not the freedom to say things however we want. Cort had some ideas about the tone of the conversation that he finds pleasant and constructive, andValthough he is a very tolerant and welcoming host, it's his party :)
I myself do not always respond as civil and wise as I should. That is very hard with cfs, the uncertainty and the nature of the topics we are discussing. I for sure would not like it if a moderator would interfere with my post or give me a cool off period. I would probably get upset/ angry as my first reaction. But I do see the need for the mods doing this, it is not a job that will get you a lot of cheers ( you basically can't do it right) but it has to be done.
I think mods and Cort are very open to suggestions for improvements,when they are handed to them in a constructive manner and when they do not feel threatened or disrespected. I guess we just all should realize that we are all human, limited for sure, with insecurities, frustrations, hurt pride, but also with compassion, the desire to do good and the love for our fellow pr members.
Black and white views are a natural first reaction for everyone as they make the world much easier, and in that sense are comfortable. However ofcourse polarization and dehumanization are not the route forward. I try to place myself in the other persons shoes, but never do it often enough :)

although this is all very sad for everyone involved, hopefully some good may come from it. There have been various suggestions that may be useful; a fight room, norms of behavior such as pm- ing complaints as opposed to reporting as a first response. These may very well succeed in making pr more pleasant for all and reduce the ( perceived) need for moderators to step in.
oh well just wanted to give hugs all around and looking forward to better times.
 
Some people are talking down to others. Constantly pointing out what they should or shouldn't know/realise etc. Emphasing this by using bold type every third or fourth sentence

It's like being back at school.

BTW I hated my four years in a rundown crappy secondary school (1975/79) in Sheffield. Most of the teachers hating being there, so no wonder most of the pupils did. I learned almost nothing from an academic point of view and left with just 2 O levels. I did learn a lot about life though.

Maria, I count myself lucky. I got sick 6 years after I got married, after I got my two kids. I have imagined this illness alone. I have written those thoughts into a character. I cannot believe you are being told that this may not be the place for you. What sort of caring community is that?

On the other hand Cort, you may in actual fact be correct.

And as many have said in support of you and PR, it is your house.

Don't lose faith Maria. I feel for you. I don't know exactly how to say it, but I do.

All I have left of my former life is my wife and kids. But at least I have them.

Adam
 
Maria,

I love this quote of yours:

But I still have the ability to speak in freedom, no matter how garbled and incoherent, no matter how slurred, never mind my shrinking vocabulary. And for that, I am grateful. Because I have lost so much, it makes this choice all the more precious. It isnt just about opinion and speaking my mind, but also about being counted. It is about that ever growing monster called invisibility which all of us know so well.
I'm glad you got to say what was on your mind, and I think you have been counted. You have fought the monster and have claimed your place out in the sun with your sunglasses on.

We see you. ?
 
You know what I am happy about? That I have no idea what happened on here! I haven't seen anything weird or contentious on here. THANK GOD. I guess I am not on here enough. I try and stay away from drama but it can find you regardless. Anyway, I am sorry so much has been weird on here.

Maria, I like this post. You are a good writer and I can understand it and follow it. You are smart and college is overrated. I pushed my way through college only to not really apply it in regular life. I am now doing something that had nothing to do with college.

I hope you can find some peace regarding the living situation. And just in all ways. You deserve a major break. My heart aches for you and I feel your pain.

I care about you....xoxo.
 
PHP:
Some people are talking down to others. Constantly pointing out what they should or shouldn't know/realise etc. Emphasing this by using bold type every third or fourth sentence
 
It's like being back at school.
Adam,

I use bold type purely to break up the long post, not to talk down to people. I might also use bold type to bring a particular point to the attention of all readers. I was not talking down to Maria or anyone else.

I can no longer read or concentrate when reading long posts due to limited vision. I am now in the highest category of vision impairment, so no doubt I will eventually go blind if my eyesight continues to deteriorate at this rate.

I wish more members would break up their paragraphs this way. Kelvin makes excellent use of bold type in his Ampligen Blogs. This ease of reading, & breaking up a long Blog contributes towards both the professionalism of the blog, & highlights his skill as a journalist.

It is a good way to highlight the important points one wants to communicate too - not necessarily bad, just helpful. It's all about interpretation.

My own Blogspot is in large font, to help the vision impaired. I also insert many photos on my own blog to bring humour & interest to the subject I discuss (and break up the paragraphs).

I think your comment is a good example of what I was talking about.
You have interpreted my post in a different way (to that in which I wrote it).

I'm sorry that you had a bad time at school. I did too - they were some of the worst years of my life, because I had very, very thick glasses & was teased & bullied for that reason.

I wrote my post, to support Cort's post (before mine), nothing more, nothing less.

I feel very saddened to see word wars on the forum. I have stopped reading most posts & stick to the gardening thread where fellow enthusiasts have similar interests & take great enjoyment in sharing them.

But, aside from that, Maria titled her post Chaos, dissension, control issues and cruelty.

I naturally assumed the theme of her blog was to comment on the recent issues that have upset the forum's atmosphere.

And there rests my case & points - mis-interpretation & misunderstandings of the written word.
 
Adam,

I use bold type to highlight a point, or assist my reading & writing.

As a vision impaired person (who will no doubt eventually go blind, I need all the help I can get).

I'm sorry that you had a bad time at school, so did I - I was teased & bullied due to the wearing of very ugly thick glasses.

I wish more members would use bold type, it really helps break up a long blog & assists me, & members like me, who have brain fog or poor eyesight.

My post was merely to offer support to Cort's post, nothing more, nothing less.

And here rests my point. Misinterpretation & misunderstanding of the written word.
 
Vicky, thank you for big bold type. I actually like it because I have such a hard time reading...I need to wear my reading glasses. Anyone can see that you are not at all combative. YOU ARE FINE...
 
Victoria;bt2280 said:
Adam,

I use bold type to highlight a point, or assist my reading & writing.

As a vision impaired person (who will no doubt eventually go blind, I need all the help I can get).

I'm sorry that you had a bad time at school, so did I - I was teased & bullied due to the wearing of very ugly thick glasses.

I wish more members would use bold type, it really helps break up a long blog & assists me, & members like me, who have brain fog or poor eyesight.

My post was merely to offer support to Cort's post, nothing more, nothing less.

And here rests my point. Misinterpretation & misunderstanding of the written word.
Sorry Victoria

I never thought about sight problems, which is of course thoughtless. :ashamed:

Once again sorry. I misinterpreted the bold type and on reflection should not have commented.

best wishes

Adam
 
Thanks, Adam.

The fact is that everyone is a guest here. If we end up running the Forums in an inappropriate manner then people will leave - and that will be our mistake - but everyone is a guest and me and moderators have to decide how they are going to be run. We're happy to have 99% of the people as guests.

I'm sorry Maria is so ill but she inserted herself very publicly - in a blog no less - in a rather contentious subject. If you felt I shouldn't have responded to that because she's so ill - well, she made the decision to post that post and that was a post that's impossible, given where it was, to ignore, quite frankly.

I don't think what she said is true and I hope that she doesn't ultimately feel that way as well.
 
Adam
. | Edit | Reply . Cort - Today 04:15 PM

Thanks, Adam.

The fact is that everyone is a guest here. If we end up running the Forums in an inappropriate manner then people will leave - and that will be our mistake - but everyone is a guest and me and moderators have to decide how they are going to be run. We're happy to have 99% of the people as guests.

I personally would not have a guest in my house who felt what I was doing was 'despicable' and was on some power trip. That was not a conversation designed to bring up deal with the issues we deal with in a constructive manner - it was very public dump.

I'm sorry Maria is so ill but she inserted herself very publicly - in a blog no less - in a rather contentious subject. If you felt I shouldn't have responded to that because she's so ill - well, she made the decision to post that post and that was a post that's impossible, given where it was, to ignore, quite frankly.
Updated Today at 04:19 PM by Cort
 
Adam;bt2286 said:
Sorry Victoria

I never thought about sight problems, which is of course thoughtless. :ashamed:

Once again sorry. I misinterpreted the bold type and on reflection should not have commented.

best wishes

Adam
Thankyou for the apology Adam. I really appreciate the gesture.

Yes, my eyesight is becoming a problem now. (well, has been for about 3-4 years at work).

And the other issue is that I'm having trouble reading long posts, especially if they don't have small paragraphs with spaces in between.

It's rather ironic, as when I joined the forum in July 2009, I wrote the longest Blogs & Posts imaginable :D.

And now..........I am having trouble reading other member's long posts in 2010. :D

I have to have a chuckle every now & then, especially as in recent months, I am having all the CFS cognitive stuff (that I used to read about last year).

Kelvin's Blog's are the easiest for me to read, as he tends to put the first sentence of each paragraph in bold type. It stops me glazing over & losing track of the subject. Clever writer is our Kelvin (but I suppose being a journalist, he has the experience).

Sorry to write off topic, Maria, but I did want to acknowledge Adam's apology.
 
Maria, that was a very touching way of expressing your thoughts.

Cort, since the last battles on the forum have started many members have been
trying to put in their thoughts in in their own style for the better of the forum.
I have not found the style of the members more offensive than the style of the
moderating I have seen lately.

Honestly, I think the moderation style is driving away more members than the
fights between members ever have.

Just my two cents.
 

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