The List - Part II - Clearing the air

[Guest guest]

Dear fellow CMLers,

Grab a cup of coffee or a tea, this is going to be a long one...

First off thanks to the many of you who have written to me privately. I am

will try to answer you all personally, it's going to take time, because my

life is on overload at the moment. This post today is just to clear the air

about a few things, and I want to thank those of you who wrote me and asked

me to do this.

You should know that I have not been reading the list, because I understand

there have been some negative comments, and I prefer not to trouble myself

with reading them - as we all have learned through our journey with this

disease, life is too short! So, I am posting this solely on the words of

those kind individuals who have written to me and told me of some of the

concerns my post generated.

Let me make something clear, my post was not to be seen as an attack on

Tracey or Zavie. I genuinely want to know who owns the list, who co owns

the list, who moderates and co-moderates, and since I personally have been

unceremoniously dumped as a co moderator, by what criteria was I dumped, and

are their rules, and if there are, what are they? I thoroughly believe in

transparency, and to that point, I hope this post makes my reasons as

transparent as possible to all of you. I will do what I can to clear up any

misunderstandings.

Furthermore, I did not make that post or this post as President of the CML

Society of Canada, but as a fellow CML patient. One, I might add who has

worked very hard over the years to provide this community with as much

credible information as possible and very often that information was

obtained at my own expense and I shared it for free. And when I say this, I

am not, NOT implying that there aren't a bunch of other people who also

contribute for which I and all of us are most grateful. I think that if we

are to continue to provide information and help here, then we should all

know what the frame work is. Once again, I would say that if we cannot be

open and honest to ourselves how can we ever hope to get the fair and equal

access to information on treatments and drugs that we all want? I hear

there has been off lists debates on my ulterior motives, a little further

down, I will share with you my views on altruism.

For now, I also want to say especially to Zavie, because apparently he asked

about it, I am delighted to tell you that there will be a new re-vamped CML

Society website launched within the next few weeks. It will have tons of

information, but it WILL NOT HAVE a CHAT LIST. So, contrary to the theory

that I am trying to solicit people to leave this list for that list, well

since there will be no list, that obviously isn't true. The issues of the

" Ask the Expert " questions will be well handled, and I am sure you will all

like the way it works out, so Zavie, thanks for your concern.

We are all human beings and as such we are fallible. I believe that

removing me as co moderator was an error, and since we are human beings and

we have the capacity to recognize our humanness, then we can forgive this

error and move on in our lives.

I wanted to mention something about altruism. I am hearing that some people

believe that it is next to impossible for anyone to be genuinely altruistic.

This has been said in the context of patients who recently traveled across

Canada to participate in a patient advisory board, and some people believe

that they did this only for the free trip and that they could not possibly

be interested in helping their fellow CMLers. The timing for this comment

in particular is interesting in that I am undertaking a specialty degree in

Bio Medical ethics and we've had a discussion on this very topic this very

week. A famous Harvard Psychologist, Lawrence Kohlberg Wrote about the

stages of Moral Development. He followed 20 people from childhood through

to adulthood and asked them moral questions and why they answered them the

way they did. He discovered there were 3 particular stages: 1.)

Pre-conventional - in early childhood, I do the right thing or else Mom and

Dad will punish me 2.) conventional - around adolescence and young adulthood

(think high school) I am only going to do the right thing if all my friends

do it too! 3.) Post Conventional, this is the highest level and it

represents growth/development. You do the right thing because you can look

at the problem from all sides and you do not fear the consequences nor your

ability to make the right moral choice and exercise good moral reasoning.

I firmly believe, that for the sake of humanity, and for the preservation of

the human race, most of us evolve to level 3 and I firmly believe that the

kind people who traveled to Montreal last weekend and took on important

tasks to help themselves and fellow CMLers to access information, treatment

and help for this disease did so and were acting at the level 3.

I also wanted to talk about the Asch study - this was a

psychological study in the late 50's - you can google it. It is quite

interesting. Anyway, the idea was that you thought you were in an

experiment with 7 other subjects, in fact, you were the only subject in the

experiment. The " subjects " were asked to look at optical illusions of lines

and tell which one out the group on the left matched the group on the right.

All other six subjects clearly chose the wrong one, then it was up to you.

37 of the 50 subjects conformed to the group's opinion, even though they

knew it could not be right. Here's something interesting to note, of those

subjects who said " no, I don't agree, I can plainly see, and trust my own

eyes, that in fact the answer should be... " all of those subjects who went

against the group had to go home afterwards as they were completely

exhausted. It takes a lot of strength and energy to speak up. I can

absolutely confirm the absolute fatigue this represents. I am asking us all

here to stop creating situations that cause many of us to stand up against

this and exhaust ourselves. We are trying to be healed from cancer and I

think creating situations that cause such harm is wrong. The only way out

of this situation is through being transparent and honest with one another.

I am not perfect either, but I am trying to be fair, honest, open and yes, I

do believe I am truly an altruistic person (acting at level 3) and I think

there are many of us on this list who are as well.

This is not the only list I belong to. As many of us do, we read several

lists, I also post and read the original ALCOR list: Subscribe to this

list-Listserv@..., Message: subscribe cml First name Last

Name There is no advertising, it is not for profit, and there is no spam.

Additionally there are rules, so there is a solid framework...

I also post quite frequently to Jerry's list - www.newcmldrug.com

Love and Peace,

Cheryl-Anne