Week 19 - Monday
Another day - and another day of adventure on ‘the treatment’. After a good yoga workout yesterday and nine hours sleep I am feeling more like the ‘me on treatment’ I know.
When I woke Ben had arrived back from his conference in San Diego, stopping over with us before the last leg of his journey home - full of news about his adventure (before he drifted off to sleep watching the video of the F1 Gran Prix in Malaysia) . Good to see him.
I have just powered up the PC to say good morning to the blog, comments and emails.
And two more comments have been posted by Colette this morning - or rather two copies of the same comment.
She tells me she is ’stunned by the aggressive response’ I made to her ‘just for pointing out the truth about haemophiliacs’. She goes to demand that I tell her - Why are you responding so aggressively to me anyway? And she demands I “define who the ‘Anyone Else’ is other than (her)self”.
She states “By the way I note that in not one e mail have you sympathised with the large haemophilia patient group who are so ill with hep C!” and informs me “Do not be fooled by the governments promotion of combination therapy , lots of haemophiliacs have gone through it and found it failed.”
I have looked in my heart over this matter - I don’t consider I have been aggressive. However I have set a parameter about posting on this blog - and done so in a way that I intend to be assertive rather than aggressive. And I believe I have set this out clearly.
I experienced this morning’s challenges, again, as me being the focus of her anger about her issues with the government - that I have no sympathy for haemophiliacs and that I am being fooled into thinking the combination therapy works for haemophiliacs.
I am not unsympathetic to Collette’s plight. Someone sent me this link to the BBC news website, which tells her story. I think it was rough justice and I can understand it leaving her feeling angry and frustrated with the government.
I had a hard time with her comments on my blog because I experienced that anger focussed on me personally (several comments posted indicated other readers thought this too). That is what felt insensitive and divisive. And an inappropriate use of my blog.
If I were told my comments on someone else’s blog caused them distress, that they felt my anger with other parties was being focused on them and they experienced my comments as insensitive and divisive - I cannot imagine I would be back the next morning demanding to know why that person is being aggressive to me - and then dispensing more points about my situation!
Unfortunately, today’s comments from Collette have continued in that same vein. So I have decided that Collette is not welcome to post comments on this blog and her comments have been removed.
March 21st, 2005 at 3:59 pm
Rest assured, Ron, your comments were not aggressive in my opinion, but made the point that you should not be the butt of someones’ anger.
I deeply sympathise with Collette (more so now that I have read her story and some other information which I have been sent), and I am sure you do too.
However, this is a place for shared experiences and mutual support. My greatest concern would be that you might stop writing this - after recent irritations from spam, and now this incident which has clearly upset you.
I have found your blog fascinating and inspirational, as I know many others do. Keep it up, Ron - you do a wonderful job.
Nick
March 21st, 2005 at 4:56 pm
Hi Nick
Thanks for your comments. Yes, I do sympathise with Collette but I seriously doubt she can hear that as she is so angry.
It’s because I do want my blog to be a place for shared experiences and mutual support I decided I needed to take a stand on ‘how we treat one another’. It was focused on me in this instance but could have been aimed at others who visit and put them off. So it wasn’t just a ‘reaction’ to Collette - I was thinking about preventing potential future scenarios and maintaining a safe space so sharing and support can happen.
It was because I fully intend to keep writing this blog that I wanted to establish some boundaries. It would take more than some spam and an angry outburst to discourage me! Or you either! I expect that is true for all of us with HepC so I dont think I have special attributes there!
Again thanks for your support.
Ron
March 21st, 2005 at 5:46 pm
Hi Ron,
I completely agree with your viewpoint. Just a suggestion though - perhaps one more comment from Colette might be appropriate - one line containing her email address so that anyone wishing to may contact her directly should suffice.
Martin
March 21st, 2005 at 9:42 pm
Hi Ron, I suffer with haemophilia as you know, I have read Colettes comments on your blog and while I sympathise with her I think she was wrong to use your blog as a “soap box”, it also sounded to me like she was having a go at you. I agree with you about blocking her from your site, but I also agree with her that the government are covering up. Unlike her I am not blind to the fact that you do not have to have haemophilia to have hep c.
All the best with the treatment.
Steve
March 22nd, 2005 at 3:53 am
Sorry to read about all this controversy here Ron. The price of fame… Great to see the photos from the event last week. Keep up the good work!
Leanporklei
March 22nd, 2005 at 4:23 am
Hi leinporklei
Thanks for the encouragement. Will be over to check out how life is going in TO shortly!
All the best
Ron
March 22nd, 2005 at 5:57 am
g’day ron. i am saddened to see that this issue has created so much friction. the need for ALL OF US to stick together is paramount. if we are to be effective in creating change and lessening prejudice, we must work together. this is difficult, given that the nature of HCV and its vectors stems from many and varied sources. i don’t know what is going on in the old dart regarding the heamopheliac/government dynamic,but i do see that the need to overcome our differences is crucial if we are to get funding, compassion and understanding out of the mainstream communities of the western world in particular and the whole world in general.
take it easy all you hepcats out there!
from oz
tom
March 22nd, 2005 at 6:30 am
hi ron. this is a postscript.i don’t know why i made that comment about golf the other day. maybe i thought it had something to do with yoga………still, humans are weird and wonderful creatures…….
so have a good day whereever possible
tom
March 26th, 2005 at 4:20 pm
Hi Tom
Good to have your comments - I am sure change is a slow process but I agree that standing together we have a better chance to move forward! I believe in ‘people power’!.
I was wondering what made you think I play golf! It having something to do with yoga doesn’t bear thinking about, mate!
Talk to you again soon
Ron
March 29th, 2005 at 1:11 am
hi ron.
no it doesn’t, does it.
seeya
tom
February 11th, 2006 at 3:49 pm
Charley
In leaving your comment – and question, you’ve added a link to your site, Disaster Recovery Services. This is a site advertising solutions for companies in managing their data back-up. Looks very technical and complex area to me and I’m guessing it would take a fair amount of technical knowledge to run such a business and set up such a site. So I am wondering why you would be asking me for advice on blog templates, which is a relatively “low tech” area – or are you interested in linking to my blog to increase traffic on your site?
If I am sounding cynical that’s because spam, etc is becoming more tricky and sophisticated these days. So, Charley, if your request is genuine please reply to me within the next few days and I’ll share my limited technical knowledge on blog templates. Otherwise your comment, and link, will be deleted. Can’t say fairer than that.
Ron