I was totally unprepared for the response to my blog last week. Really… really unprepared.
Can I just say that I started writing a blog for me.. and for my family so they would not always have to hear me say all the things I vent about (or celebrate) in my blog. But I also write it because I think that sometimes, it may be useful for some other JA parent – we have so many things in common. This JA business can be a lonely thing. So of course, I like the idea that I might help somebody else. Who wouldn’t?
But – I’m not like.. a Blogger. I don’t have a plan for how to “generate traffic” and apparently I should be concerned about an RSS feed – but I’m not certain I know what that is. I don’t know how to “pin” anything and I haven’t ventured onto instagram yet. I only just recently figured out how to connect my blog to its own facebook page. It took me forever to set this thing up, pick a design and click the right boxes – and I haven’t looked back since. I dream of doing it someday – making it all modern and cool and connected – because it seems really promising and I know a bunch of people who do it really well – and even get paid for it! And they win awards for Best This Blog and Awesome That Blog – and they amaze me.
But me? On my highest blog view day before the thorns – I had 121 views I think. And do you want to know how most people land here? Because even a novice like me can look on the “stats” feature in wordpress and see how people find me….. Most people accidentally type the letter “R” and hit enter. And I have a blog post called the “R word”. Voila! 661 hits in the last 30 days brought to me by the letter “R”. Also searching “fingers crossed” (125 hits), “Big Sur” (248 hits) and “cease fire” (236 hits) are great ways to stumble upon me. Where I live, Kardashian flatulence would get about 1 gazillion times more exposure than my little mom blog.
Imagine my surprise when I wrote a little personal response to a giant article in the NY times and got close to 1000 hits in two days (plus another 500 plus on arthritis.org). And I actually think that most of them came from people who read the entry.
Believe me, I’m not complaining about the fact that people linked, forwarded and shared it. If I did, this would be a private blog… or I would simply talk to myself in the shower instead. I’m grateful for anybody who would spend some of their valuable time reading my words. Normally – I’m happy when anybody comments at all – and I do have a couple of posts over the last three years that have two or three responses! So you can see that I was not prepared for all of the comments and feedback – both positive and negative. And just when I thought the hubbub had died down – the Arthritis Foundation (where I post the same entries of this blog in their online community) put my blog on their facebook feed and the storm whipped up again.
And at first I was all chuffed up – because I had so many parents actually THANKING me for saying something that reflected what they were feeling. Oooohhhh, and I was feeling so loved and happy and felt something strangely resembling accomplishment! I think I really helped some people feel better… and there could not be a better use of my time and energy, right?
But then, some people who did not feel such endearment starting offering their feedback. And some of the things they were saying did not make me feel so lovely…. because it wasn’t really about what I wrote all the time. Sometimes, it was about me personally. I was Judgemental. Unsupportive. Reactive. Closed Minded. Mean. Offensive.
What? Offensive? I tried so hard… to choose. every. word. carefully. Seriously – I’m not a professional writer – but I’m not exactly a hack. I tried so hard to come out in support of families like me, without slamming families like the one in the NY Times piece. I am vanilla that way… Look at me! I am Switzerland! Because I do, in my heart, believe that we are all part of some large family of those dealing with these diseases…. and I’m really not about spitting on anybody’s parade. I spent five hours writing, reading, re-reading – forcing other people to read, rewriting some more before I hit publish.
So when the feedback turned negative – I had to fight the urge to defend myself to everybody. I had to stop myself from saying – didn’t you read the part where I said if I were in her shoes, I would be singing it from the rooftops as well? What about the part where I said I hoped that the information would help some people? I responded once, on one feed – and then just sat and watched in surprised horror as people carried the conversation forward like an angry tidal wave. What had I done?
One particularly heavy afternoon last week, when I was all woeful feeling the wrath of this, my boss asked me what was wrong. And after I explained it, my boss who is very wise and schooled in spiritualist thought from around the world said – “But you said what you had to say. And people’s responses, whether they are negative or positive – are about where they are coming from. Their space. Not yours. So you can’t control where they are coming from. You can’t control their response.” Like the wise Yoda, she is.
Hmmm. So…. maybe when I responded to the NY Times piece, it was about my own frustration that a major newspaper finally devoted this HUGE amount of space to the disease my daughter suffers from… and I felt that the portrayal was not complete and may even be harmful. It was about my own fears over the years, my own anxiety at every choice I have made… my own frustration that even today, when a young girl I know just lost all of her hair because of this – this disease is still misunderstood and trivialized.
And maybe… when some people read my response – they were upset that when their own point of view, favoring alternative therapies – which is often dismissed and called quackery – finally received some positive attention, I was right there to shoot it down. Their responses to me may have been less about me, and more about their own frustration at trying to get people to understand what has worked for them and why they have chosen their own path.
We’re really not all that different…. coming from a position of challenge. Trying to overcome the same obstacles – just in different ways. Dealing with many of the same misperceptions in this world. All of us, ultimately, wanting to be cured. See what I mean? I’m more Swiss than Heidi!
I did actually contact somebody who had offered a different perspective directly to open a discussion… because it’s my own personal flaw that at the end of the day, it was the negativity that chewed on my heart, as much as I tried to let all of the positive responses build me up more. It ended up being very cathartic and enlightening. I understood everything so much better…..because many people DO agree with the tone, content and message of the NY times piece. And if you follow alternative therapies – you already deal with negative feedback and people dismissing your ideas. If you read the 665 comments at the end of the article (and yes, I did) you would see that they were overwhelmingly in support of that narrative.
So- I would like to clarify – for the 30 or so people who actually read my blog and the other 50 who happen to land here by searching for the letter “R” –
I’m not sorry for what I said. I really meant it. Every carefully chosen word. And it absolutely came from my heart – it was my gut reaction. But I also don’t want anybody to think I don’t celebrate that mother, or that child’s remission, because I do. And I don’t want you to think that I am unsupportive of you if you are controlling your disease, or your child’s disease, in a way different from me… because I’m not. Do it however you can! My defense of me and parents like me was not meant as an attack on anybody. My attempt to add my voice to the fray was only to battle for a greater awareness, greater results, greater future – for all of us. If I gave you any other impression, well, I am sorry for that.
And even though my skin is slightly thicker now… if a hypothetical response of mine should hypothetically get posted in some paper this weekend – before you shoot a flaming arrow my way, I would ask you to remember that we are basically on the same side. Basically. Same thing goes if you want to send flowers and chocolate