From the day I had launched Without Envy I had read and written enough of my own to find appealing the degree of anonymity other authors had chosen to pursue in terms of their privacy. They were writers of great masterpieces — To Kill a Mockingbird, The Catcher in the Rye, The Road — and as such, unlike me, prone to unwanted incursions into their personal lives. But it was not their work or success that inspired me. It was their belief that their writing could speak for itself.

Then Lia — I have struggled for months how to say this in active voice: had she contracted, developed, or simply come down with diabetes? — was nonetheless diagnosed with Type 1 and I created this web log as a place to write about our experience. Why I chose the internet and not a private, paper cardboard notebook to do this, I don’t really know. It wasn’t to share with an audience. Though the support and acknowledgement is irreplaceable, having it read is not really that important to me. Perhaps it would be were what I wrote for Without Envy fiction, but when you are writing about real life you have in your mind this true perfect image of what should be said and you can never quite achieve it. Words like sadness, joy and frustration fall short, so the feeling just goes nameless, truly understood only by others who share in the circumstances. In matters so close to the heart any degree of obscurity is a difficult thing to accept. Maybe it is that way with fiction too. But with fiction, liberties from the truth are to be expected, it’s permissible to look the other way.

What is important, of course, if for no other reason than to make peace within myself, is to write about this experience in detail and how I feel about it. The worry then and the namelessness of my worry might evolve into something else less ethereal, less tiresome. Eventually, it might turn into practice and as such become just one more detail in the story of our lives, so that the emotion will lose some of its power to arouse fear and cause paralysis. Or as Shakespeare so beautifully put it: Give Sorrow Words. The grief that does not speak/ Whispers the o’er-fraught heart, and bids it break.

To this end, I have lately been thumbing through a book by Louise DeSalvo, Writing as a Way of Healing: How Telling Our Stories Transforms Our Lives. In it she mentions a zen proverb that I found especially inspiring. It goes: how you do anything is how you do everything. That got me thinking about the restrictions I had imposed on this public journal in regards to our anonymity. From the outset I had been careful to not use last names or the names of places or anything else that might needlessly give away more about ourselves than I wanted revealed. I knew how unkind the world could be and preserving some level of privacy was important to me, and to us as a family. It still is, but the direction behind it has changed.

It used to be I thought paradise was forty acres of wooded land in the middle of nowhere. No neighbors. No passing cars. No unwanted external intrusions. All the garden and wild meat we could eat. It isn’t any more, though there are days I still long for that. But Lia’s diabetes, among other things (peak oil, climate change, a growth-oriented economy), has triggered in me a practical awareness of our undeniably inescapable vulnerability. It (they) requires a shift in perspective, a rejiggering of priorities, and perhaps a bit more willingness for more community not less; more trust, more sharing, more appreciation and reliance for the companionship found in our fellow humankind.

Trust though is a difficult thing to surrender and there will always be the need for mindfulness and discretion. But the threats we face are not nameless, and nor should our selves be to one another. Isolation can only serve you so much, because how you do anything is how you do everything, whether you are sharing some small piece of yourself with a stranger or opening the door wide to let enter a friendly new neighbor.

Maybe that is why a little bound notebook wouldn’t do.

9 thoughts on “Revelation

  1. This post really resonated with me, especially the second-to-last paragraph. After blogging for a year, using the real names of my family members, I recently gave up that blog and launched a new one. As I was prepping for the launch, I debated whether to use pseudonyms. I weighed the pros and cons, and ultimately decided that I would not be true to our lives, if I had, in fact, not used our real names.

  2. I really enjoyed this post, it spoke to me beyond what the words were saying, which is a great hope that I imagine good authors hope for.

    Two things from this for me. Writing about life with diabetes helps me a great deal. The exercise of having to put words to some very vague emotions really helps me work through them. The fact that I can do that writing on a blog helps my thoughts and words evolve, as others add their thoughts and words to my story. It is really a beautiful thing, and I’m thankful to have your voice in the choir.

    The other neat thing about blogging, and I suppose writing in general, is that you can really control what you reveal and what you don’t. That makes it a very comfortable place to express yourself.

    Thank you!

  3. It’s hard to draw the line between discretion and distance. Especially when you’re writing about something designed to connect personally with people. I’ve yet to come up with a comfortable balance with my son, who’s 3, who was diagnosed a year and a half ago. I want to talk about it, and him, in a way that makes it easy for people to relate to, but how to do that both safely and effectively still eludes me. The internet is a great way to meet and connect with people, and faces and names help with that. But at the same time, the faces and names, among other things, that other people share may not be real and only designed to promote a false sense of security.

    I like your point about needing more trust and more community. Paranoia can sabotage our relationships online, and at some point we have to have some faith in others.

  4. Hello Steve — just catching up with things. Gosh how much of all this is a journey. We evolve with and through our relationship and our children’s relationships with D — and with each other.

    I too have struggled very often with notions of anonymity. It helps that my surname is different from my children’s, though in my regular DUK column I do name my son. Not my daughter! It’s funny the lines we draw. He has agreed in some way to put himself out there — a photo also appears in the magazine. But she is much younger, only ten, and perhaps cannot agree in the same way.

    What I wanted from reading about others’ experiences was the sense of them being real and connected, not at a distance. Not naming always risks a distance, and we get enough of that maybe through medics or others…?

    Anyway, great post.

    Jules: you in UK too?!

  5. Lovely, Steve. Actually that works without the comma too! This online community provides such solace to me. I am aware that photos of Frank as he gets older might need to become less obviously him. But I remember the first almost year after diagnosis as a bit of a wilderness as I had no idea how much support was out there. Writing helps us all, it seems, but more to the point it can help others with newly diagnosed children to see and hear others who have been there and who are still there and surviving well. And in the face of widespread ignorance and shock-horror TV programmes (we had one this week in the UK; young people at BG of 50 and declaring they’re fine and they’ll inject when they feel like it) writing about your healthy child and their small milestones is a huge force for the positive.
    Sorry for the long comment but I haven’t had time to write a comment here for a while and am making up for it! Love to you all.

  6. I had been blogging for about four years relatively anonymously. When I started D-Mom Blog, my husband and I discussed whether or not I should use real names. I think it’s important to put a real name with a real face of diabetes.

    I did feel a little isolated in all things D until I opened up and started blogging about it. And finding kindred spirits has helped me immensely.

    Thanks for yet another great post.

  7. Our cup of tea, indeed, and thank you for putting me in such company. Though I admit I had never heard of The Frames until we watched Once and fell in love with the music of Glen Hansard. Thanks for posting, Shannon.

  8. There’s this band I love and they have a song called “Revelate”. Their music does the same thing as your posts: both move me. In different ways, sure, but they are both powerful art forms and I am always slightly better off having listened/read. I don’t know what kind of music you like, so they might not be your cup of tea, but here are some lyrics from the song that shares (almost) your post title:

    my simple slant
    this broken chant
    my human fate
    my revelate
    are you so far from me this day
    that you can’t say my revelate

    Thank you, as ever, for sharing.

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