Saturday, May 19, 2012

From Stephen Kuusisto's blog Planet of the Blind:

I don’t hold with the Atlantic Monthly’s recent article that proposes we are lonelier because of facebook. I think that people with disabilities will attest, overwhelmingly, that connections are now possible for those of us who have a hard time getting around. The vocabulary of life itself.  
Czeslaw Milosz wrote: “Where does humility come from? From sitting down and putting little signs on paper with the hope of expressing something.” Life itself. 

I'll venture to say that this holds true for those of us connecting through blogs, particularly those of us doing the extreme parenting. When Sophie was diagnosed in the spring of 1995, I didn't even have a computer. I had a friend in nursing school who would get me copies of medical articles from the library, available only to those in school. I made phone calls to people who knew people who knew other people. I found out about the ketogenic diet in People Magazine. I called doctors in Canada and left messages on answering machines. I also cried alone, screamed in a huddle on the bathroom floor, the water pounding down and drowning my screams while the baby screamed in her crib. My little signs on paper stayed on the paper, and how much better, how really sustaining it has been to have you. And you. And you.


  1. I often wonder how different my life would have been if I'd had this way of expressing my doubts and fears and sorrows and joys and all of that stuff back when I was a young mother. And I'm just a regular mother. I can't even imagine what it means to you.

  2. I'm not a mother doing extreme parenting. I'm a bit older than you. But I'm a mother and I've experienced all the feelings that you speak of in trying to love, understand, help and raise my daughter. And I'm just a woman, like you trying to find her way in the world.

    I feel privileged to have found you and have grown so much in my understanding of your world and the way you live it and I feel a better person for that. I'm grateful that you let me come back again and again and put my little comments here in my effort to let you know I am with you. I hear you.

    It is a real blessing for me to laugh with you and cry with you and be angry and joyful too. Truly.

  3. As a single bipolar agoraphobic mother with a toddler with his own issues and no family support on either side and no news of daddy I wonder too what would have become of me had I the support I find here on a daily basis.


  4. you do express it perfectly..... my first born came to us in 99 and I remember feeling paralyzed at home with a slow computer that no longer responded... keeping your pulse on the world and the knowledge it offers,is always vital to good mothering. I am sorry you both felt and actually were so alone with your pain and so locked out of vital information about your baby's condition. Your expression of this isolation is painful to read, I hope that the blogging outlet has alleviated some of it. There ought to be a study.. then and now...bloggers, non-bloggers... does it help?

  5. I can only imagine what an asset the Internet must be to someone looking for information about specific conditions or medical situations -- or, as you said, extreme parenting. I think it must also be amazing for gay kids, who can use it to connect with each other and realize they're not alone (unlike those of us who grew up thinking we were the only person feeling that way).

    I love Facebook, and I think it's kept me in better touch with many friends than I would have been otherwise. Its only drawback is that it "flattens" my friendships into a single tier, so I'm as in touch with old high school acquaintances as I am with, say, my brother. I suppose I could remedy that with some good old-fashioned communication, though!

  6. My computer and the connections (and of course access to research info) it has provided have been my salvation. Nothing superficial or artificial about the genuine friendships I have made online. And might I add...thank god for Skype.

  7. As a daughter of a mother who was being dissolved by dementia, my blog was a lifeline to sanity.
    She died in December, but the blog lives on. It's there to refer to and remember all the horrible good times we had over the past three and a half years.
    It connected her with friends and family in a new way and my tiny band of followers kept me company in the dark.

    I can only imagine what a lifeline it is to you and your lovely Sophie.

  8. Actually, FB and Blogger have been a lifeline... in every sense of the word!

  9. Yes, and yes, and yes.

    When my son was diagnosed with epilepsy in 1987, there was the neurologist and the library. The neurologist barely spoke (but he was a good dr.) and the library was frightenly absent of pertinent information. I recall a friend who was in social work dropping by one night after work with some pamphlets. Pamphlets!

    Now my son, at age 26, does his own research online. If it weren't for his own specific disabilities stemming from the damage wreaked by seizures, he'd most like be pursuing his own career in neurology.

    I am filled with gratitude every day for what it is he can do, and am shocked when family members dole out what they think is advice, when they haven't even bothered to look up online what it is he deals with on a daily basis.

    The internet is his lifeline.

    And for those who say that we're lonelier because of facebook, quite the contrary is true for me. I'm a thousand times less lonely because of facebook.

    Virtual communication is neither better or worse, it is merely another means by which we connect with the universe.

  10. My lifeline. That is what this world has been to me. I googled Infantile Spasms 4 years ago and literally slumped against the wall and slid to the floor. I then found a blog, of a mom with a boy similar to Zoey and I saw a beacon of hope. A light through the darkness. This online world has sustained me and carried me and without it, not certain how I would have made it in some moments. Sounds so dramatic does it not? But it is all true. Only those who are engaged in this life know the truth behind the power of this place online.

    Thank you my friend for being one of the gifts that has come from it all. A true blessing.

  11. And also you. Thank you for this. For you.

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  13. Yep. We have no seizure disorder support groups in my area. Between online forums, academic journals, and now Blogger, i could go on, and on how the interwebs have been a safety net/hammock hybrid element in my life. (And maybe also one of those blow-up bouncy castle deals, because there's also that whacky, distorted, pointless, carnival element to the net too.)

    Anyhow, i've only known two people with seizures so far. One of them died suddenly last year and the other shot herself a couple months ago. (which isn't to evoke sympathy, but to express how much i appreciate any bit of community i find.) Because while i hate to know others are struggling, it's also reassuring that there are others battling this same crazy demon, albeit from different vantages.

    It's a treat to observe all the sharing and connections around here and to be able to glean and learn from the lessons you remarkable folks have so bravely submitted out into the blogosphere; such a beautiful collection of burdens, triumphs and journeys.

    Another great post, thanks. And geeze i agree with everyone above emphatically. What are the odds of that? I've stumbled upon a beautiful thing. I'm awestruck how you've all breathed life into a virtual, artificial realm; so talented and powerful your words.

    Mountains of gratitude for everything i've siphoned from your world here. Sorry for the long-winded comment. I'm striving to be more succinct, but i guess, yet again, you've struck a chord with me. I don't mean to be an effusive, cheesy sycophant; I've just enjoyed my time around these parts a great deal. I can't help but express my heartfelt thanks.

  14. I was thinking the other day about how moms now... some very popular bloggers like kelle hampton, etc, have got to live their entire early experiences of mothering a differently-abled child with the support and connection of a cyber community and the "therapy" of blogging. I was kickin' it old school with you... back in 1995 with no blogging and i too did not own a computer... and when i did years later i was too broke to afford internet service at my apartment. it was just a different time and i connected with people the old fashioned way - support groups and parents at my daughter's school. it was really different back then.

  15. Oh so so true. I can remember writing our original blog back in 2005, and that was my way of trying to reach out and connect with people. Blogging was not the done thing back then, but I used to get so many emails.
    FB and the blogging world are definitely my lifelines too.

  16. If Facebook makes some people lonelier - they already had a hard time connecting with people

    I am much less lonely (than I would otherwise be) - I live in a small town with N O O N E who gets me. I can borrow sugar from my next door neighbor, we have fourth of July block parties, there's the moms of my kids friends, I can chat with the checker ... but my handful of people that "get me" live far away. I would die inside without the "virtual" world. It's as real as anything. As long as I'm real.

    ... and thank YOU for being real too!



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