October 16, 2012

Comments welcome

Readership has dwindled according to the statistics page. The one constant is hits my original post on tracheostomy surgery gets every single day, because of the diagram. Most hits come from India, Sri Lanka and further east. But true readership has certainly declined. Comments, except for my die hard fans and friends (whom I greatly appreciate, more on that later) is non-existent.
This lack of comments saddens me. Not because I need an ego boost, not because I'm looking to pick a fight with someone but because of the very reason that I have friends who comment: I met them through blogging.

While I originally started in 2007, after telling myself for about seven years that there was no point to blogging, it wasn't until I discovered Claire's blog  Life with a severely disabled child that I said to myself, this is it, this is what needs to be done, to tell Segev's story, before it is over, before something happens to me and there is no one to tell it. He deserves it and it should act as both proclamation and inspiration. Again, not because of me writing it, surely it could be written better, more clearly and in organized fashion, but because he is simply such an amazing person.

I recently did a very 'facebooky' kind of thing and put out this picture on Segev's facebook page:




I did this because I realized that I had forgotten just how effin' amazing my son is. I could shout it out from the rooftops but being branded a lunatic seemed counterproductive so I settled for this happy median.

Back to the commentary on the blog: by commenting on other blogs, reactions occur, contact is made, other blogs and profiles are investigated out of an interest to find and connect to similar minded people. That is how I became friends with a small number of people, that because of my hermit lifestyle with Segev, is not possible outside of virtual reality. But don't be fooled into thinking, old school, that virtual reality is to be scoffed at. Except for my second ex, no one believes that anymore, do they?

But the majority of people who read a blog, any blog, don't leave a comment and there are as many reasons for this as there are people. Some are intimidated or simply prefer to keep their opinions to themselves, despite having the option to create a 'fake' identity and comment. Perhaps having a 'fake' identity is not appealing to some. Other might be reading your blog simply for quick entertainment value, moving on without truly connecting. Others feel at a loss to properly express themselves or find it too disturbing and energy consuming to jump in and be part of it. Some afraid to get carried away, say inappropriate things, not fully understand or perhaps disagree so much yet out of respect don't wish to start an argument.

Most bloggers exercise the right to filter responses. Some do it in order to weed out any anonymous remarks. Others feel that if it isn't positive, it shouldn't accompany their story. I feel that there is room for discourse but admit that there is a certain etiquette which I severely broached when I first started commenting elsewhere. I quickly came to understand that discussion had its limitations in the small rectangle where I could place my, often contrary, remarks. Respecting the blogger certainly meant not saying anything inflammatory, even if my intention was simply to express my consternation and try to open a dialog to gain understanding. Apparently it doesn't work that way in virtual reality, not yet and probably never will. This is that aspect where electronic mediums are simultaneously bringing people together, but also keeping them apart because communication over the internet is not the same as sitting down with someone in your home or a coffee shop. There is so much more persona present in cyberspace.

But still, I would encourage people to write comments because it can lead to some really good stuff happening in your lives. If you are content to stay silent so be it, this is not a dating sight after all. But it is a blog about Segev, my son, my thoughts and experiences living the life of extreme parenting and hoping to show some readers that, together with brutal reality there is undeniable and exquisite beauty to be found. Profound truths about our connections to others which define our humanity. Not because I say so, but surely because Segev shows that so clearly. And just as the 'motivational poster' above shows, we need to busy ourselves with open discussion of human beings caught in such unfortunate circumstances because so many seek and so few know that there is more to life than extreme sports, television and recreational drugs to relieve our perceived boredom. The tremendous advantage of sharing in life may not be readily visible, but it is there.

I want to sign off with this comment left on Segev's facebook page:

"He's a perfect person. One who gives much more than he takes. An innocent, having no malice or holding any grudges. One who loves unconditionally and completely. One who finds happiness by knowing you're there. It would be a privilege to know him. It's a pity more people don't."

13 comments:

  1. I will always read and learn. I will always relate. A union of great worth I have made.

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  2. I apologize. I am a longtime reader and infrequent commenter. I read your blog through my feed Reader, and rarely "click through" to your actual blog to leave a comment. I apologize for not being more interactive, I write a blog myself and know how important the comments are. If I may be completely honest, I often do not know what to say, other than something you might perceive as "trite", like STAY STRONG! Obviously you ARE staying strong, you don't need me to yell it at you like an online cheerleader, I know no one stronger than you. Or stronger than Segev. I want you to know that I read and have followed along for years because I admire your determination and your ever-faithfulness to your boy, but your journey is so intense, your day-to-day existence so overwhelming, that I often do not know what to say that would be an encouragement. I realize now I was wrong to stay silent. I apologize. I do follow along on Facebook as well, I am always so happy to see an update.

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  3. I always come to visit, thoroughly enjoy reading your words and insights, get inspired and learn much. I take away a sense of re-commitment and hope. Being a semi-hermit like yourself, I also appreciate any comments and dialogue..it's like if people even say "I read it"; it re-affirms your existence and purpose. I really get it and believe in a world of reciprocity. I'll always be back and will leave words, even if they don't always make sense.

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    1. Your intentions are always felt, my friend.

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  4. I know how important it is for all of us to tell our children's stories, and for people to hear those stories. I love Segev's Facebook page above, and what it says about what matters.

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    1. I always feel the need to apologize for the ruckus, but now i realize it needs to be louder. Thanks for the support and your great blog.

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  5. I did read your update on Segev yesterday and I must say, I was at a loss for words. I cannot imagine this uphill battle you are fighting. I do know that you know what is best for Segev and the right decision will be made. He is such an inspiration to all of us. Please know we think of you everyday :) And Eric, your strength through all of this is also very inspiring. I do know that I would do the same for Emma in a heartbeat. It's just hard to see someone fighting for answers and you can't do anything to help.

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  6. Eric - I am one of your silent blog readers. I heard about your blog through Bill Peace's "Bad Cripple" blog. Segev's strengh through your efforts moves me greatly and I am always overwhelmed and touched by your words.

    Having a "normal" 16 year old teenager, I am always in awe by your hard work. Don't give up the fight.

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    1. Thank goodness my other children are already past that age...Good to have heard from you, thanks.

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  7. Eric - you are an exceptional writer and that is why I came, I read and I stayed. I read a lot of blogs about very special, beautiful children and as the parent of a child who fits into that category, it can be emotionally exhausting to allow yourself to get wrapped up in another family's journey. But, there are a few journeys that I find and the connection is immediate. Your's is one of them - in large part due to your writing and your ability and willingness to share it all. You keep it real. I don't always comment, but know I stop by each and every day. You and Segev have touched my heart.

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    1. It's good to know that someone out there can gain a bit of muster from Segev's life, just as I do from him and as you said, a few others. With sharing our stories we strengthen our position on the value of our children whose lives in this world appear ephemeral at best to some, but mean the world when looked at with clear, educated, compassionate eyes.

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  8. Hi Eric. I do read what you write. I am sad and tired. I don't feel that my sadness, so deep, should be spread, and anyway I'm sort of too tired to spread it. But Segev's life and his father's notes are important to me.

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