This is what I have been talking about on my personal Facebook page. If you resonate with this, friend me. I think the more people on the mission to promote heart-centeredness, kindness and consideration, the better.
From my personal page:
“Yesterday I posted about ALS and the fact that my dad died of ALS when I was 13 y/o. I also mentioned that I was pretty disappointed with the negativity targeted at the #ALSicebucketchallenge #icebucketchallenge aimed at raising money for a cure for ALS. Just to be clear, I LOVE sarcasm – I’m Australian – but there is a muddy line between what is funny and what is plain thoughtless. In this situation I truly don’t think it’s funny. In my opinion it reinforces the feeling of shame I grew up with and essentially feels like being told to “shut up” and not talk about the uncomfortable stuff.
When I was a child watching my dad’s body deteriorating at a rapid rate, going from an active guy, great tennis player!!, great dad who was always wanting to take us out and about, to a 35 year old using a walking stick, and soon after a guy in his late 30’s who was wheelchair bound, and housebound. What I also began to notice was that there were friends that we used to see that we just didn’t see any more.
My dad was ashamed about his condition. I felt ashamed at times; I was a confused 9/ 10 / 11 year old, embarrassed to talk about my dad and why he was in a wheelchair. Some of our friends found it difficult to know how to deal with seeing him deteriorate from this active thirty-something to a guy in a wheelchair attached to oxygen tanks who was finding it more and more difficult to talk and be understood.
The disappearance of these family friends felt like shunning. We all felt the ever-present weight of shame. Like Anthony Carbajal talks about in his viral You Tube video about the ice bucket challenge – which was awesome by the way. He rocked those pink shorts!!! – he says, talking about ALS is kind of a downer. I sooo relate. Maybe that is why we just didn’t hear from some friends anymore.
When people are complaining about the #icebucketchallenge it reminds me of this feeling of shame and shunning. I don’t think that the ALS community deserves that. Like Anthony Carbajal has said, this is the first time that the ALS community has been truly seen!! Do you really want him and other members of the ALS community to go away so that you don’t have to feel uncomfortable?
PS> As a family when my dad was ill and after he died we were very, very fortunate to have a LOT of amazing friends who did support us. In this post I just wanted to point out that shunning and shame is such a huge issue with ALS sufferers, family and friends. We can all do with working on being more thoughtful, mindful and heart-centered, IMO!”
Share in the comments here, and on FB. SERIOUSLY, there is way too much negativity and insensitivity being targeted at this cause. It is okay for the heart-centered folks to get feisty and defend the need for more kindness, love and consideration in our culture!!!