On July 6th, an accidentally posted obituary for me appeared on a blog called RetiredForGood. The author is a friend of mine and had written the posting two years ago at a time when my survival was in some question. While the posting was removed as soon as she realized what happened, a number of people read her premature announcement. People attempted to go read the obituary, but by then it had been removed and replaced by a rather cryptic and vague post which was not interpreted as a denial of my passing. Instead it’s lack of substance caused readers to surmise the original posting was somehow inappropriate; perhaps it was making my death public before my family was informed or some other social protocol error. Thus I received a number of communications seeking verification of my status. These confused me because I had no idea what they were talking about because I had not seen the posting. However, my friend and author of the obituary commented to me that she had something to explain and said she needed to do it at a later time. I prodded her about this mystery topic in an email and in reply she finally told me about her error.
Being who I am, I thought this was all terribly funny –until I heard the unhappiness that the news of my passing had created in Deludia readers who’d heard the rumor. Putting myself in their place I realized the impact the loss of someone in my life would have on me, even for someone I only knew through the medium of the Internet. A couple of ‘forum friends’ I made in discussions about Multiple Myeloma passed away and I was very saddened by the loss. I found the comments by people celebrating that I was still alive to be touching and complimentary, but it also indicated how they must have felt believing I was gone. I don’t think this is funny anymore, but I’m also not angry. Accidents happen.
One thing out of all of this did bother me a little. I posted on a popular Myeloma News blog to confirm that I was still here and still writing my comments, stories, recollections and opinions. I listed the various places that mirror my blog and permits people to contact me like Facebook, Tumblr, Blogger and the Amazon author page. The ‘editor’ of this blog saw fit to modify my post in a couple of ways. This means that the post is no longer my words but theirs. I didn’t like this and so I went to simply just remove the post, only to find out that I could edit it, but I couldn’t simply remove it. I would have to prostrate myself before the editor and request the removal. This is unprofessional, disingenuous and kind of petty. If you’re going to offer a forum and solicit reader comments, and also permit authors to edit their comments, then they should be allowed to delete them. Not only that, but professional protocol for user comments which violate forum rules dictates that a post be removed in its entirety, the author contacted and explained how their post was inappropriate, and offer them to either post again or choose to forget the whole thing. But rewriting posts which they claim are the commenter’s own words when they aren’t –and then disallows the full removal is bullshit. I have no problem with having my posts deleted for cause, it goes with the territory when the subject matter can get personal and passionate. But I will never accepts smarmy censorship that is enacted, especially without notice to the poster. It’s like they haven’t the courage of their convictions and so take a morally dubious course rather than being open and up front. Of course, keep in mind that Deludia got its name because it started out as a forum that pointed out inaccuracies and false claims through media outlets. It was later repurposed to be a chronicle of my cancer journey, and now spends its time demonstrating that the lives of cancer victims is not all and only about cancer. It’s merely a facet of some lives. I maintain that we cancer victims are not heroic soldiers doing battle every day with an evil disease; we’re just unlucky people to have an aspect of our lives that’s unlucky.
Then too, I fault any physician who detects and diagnoses Multiple Myeloma and immediately starts the chemo process with a goal of stem cell transplants. I think each patient should be taken on and individual basis and that any therapy, IF ANY, is customised to the specifics of that one case and that the agents of therapy be carefully chosen. Too many doctors see a Multiply Myeloma cell and reach for the Velcade, Revlamid and Dexamathasone. I believe those actions make Multiple Myeloma treatment more problematic and enlists more collateral damage (including death) than more reasoned and researched custom approaches. Obviously with pharmaceutical company and doctors paying the freight for some forums, I am used to having my posts quietly discarded and hearing from the admin that they would appreciate a post from me more in tune with the perceptions of their funding sources. I have no trouble with that. But stealthy assigning words to a commenter’s post is underhanded and no one should tolerate that. Especially when the original author is proscribed from simply removing their post.
All in all, certain depressing situations have developed as a result of a simple mistake. But we can’t unring a bell, and the most intelligent thing is to forgive and forget, and move on to more important discussions.
