Into the Heart of the Thing

If I wanted to do this blogging and writing thing with a bag on my head, I would have had to make that choice at the very beginning. I don’t think I would do it differently even if I had it to do over again.

I kind of hate it when bloggers write about blogging because duh, most of my readers aren’t writers at all, so apologies in advance.

In November, 2010, I decided to take a short break from blogging and and all things internet-y to spend some time with my youngest son, Carter, during his fall break from school. That was true, but it was only half the story. Over the summer of 2010, No Points for Style had gained a respectable readership. I wasn’t playing in the big leagues by anyone’s definition, but my blog was growing and it was thrilling. I wanted (still want) nothing more than for people to read my words. Yes, I’ll cop to it: I want to be famous on the internet, and maybe even famous in the real world. That’s more complicated than it sounds, because it has more to do with wanting to be heard and needing my life to matter in some broad way than it does with fame per se, but I don’t guess I’ll figure everything out right here, right now, so, on with our story.

While watching my blog gain readers was exciting, it was also terrifying and confusing. I’m still not exactly sure why. Comments and emails about how I am poisoning Carter by giving him medicine, or how I’m ruining my relationship with my older kids by sharing stories of my marriage to their dad, or the occasional generic hate-filled diatribe peppered with misspellings and grammatical errors don’t particularly bother me.

I do know that I was paying far too much attention to the noise in the blogosphere (and social media more generally) about what was and was not OK in a blog and I pretty much tied myself in a knot over what other people might find acceptable.

Which, well, let’s back up a little bit, because this is what I do. I define myself, not based on my own preferences, talents, abilities, limitations, etc., but based on what others expect. And this is no small thing. In fact, it’s been pretty much sucking the life out of me for as long as I can remember. On meeting me for the first time, people tend to think I’m shy, but I’m just taking a few minutes to suss out who you would like me to be so I can be that person for you.

However (and this is one big-ass however), I am also an extremely passionate person with strong opinions, and I don’t just share those opinions; I deliver diatribes. In meetings, at church, at community events, in groups, I’ll be sitting on my hands thinking, “Be quiet. Just skip it this time,” but alas, I’m what you call mercurial, and before I know what I’m doing, my hand is in the air and there I go, speaking, and I have big gestures and high volume to go with the words. Put the passion and the fear together and (as my husband would be very willing to tell you), there is one sorry-ass puddle of shame-filled Adrienne to be found in the after.

Oh, Lord, The After. It can be ugly.

The After wasn’t particularly applicable to writing for a long time, in part because my audience was tiny, but more because writing gives writers as much distance from their subject matter as they choose. If a topic feels safe, I might dance right into the heart of it, and if it is dangerous I can stay safely away from the tender center.

And authenticity, integrity, blah blah blah. We analyze and dissect these ideas in the blogosphere as if they were real, achievable goals, an endpoint that some will reach and some will ignore in favor of a well-managed online identity and the product endorsements that are the supposed result of such bedazzled lives.

For the record, I always thought that was the falsest of false dichotomies. Whether we aspire to authenticity or not, we are all carefully managing our online identities with every word we share. I just had no idea how trapped I would become between the two non-existent poles.

I have never lied here in the virtual pages of No Points for Style, which is not to say that everything I’ve written has been factually accurate, but storytelling is the very definition of subjective. The truth as I have written it here belongs to me and no one else. The facts? Well, I don’t know to whom those belong. God, I guess, or maybe the past, but certainly not to me.

Even more strangulation has come in the form of replaying over and over the random bits of advice I’ve heard across the years. Be funny, said some; focus on mental health advocacy said others. Write shorter posts, from one corner; be more casual from another.

Why I even listen is beyond me because I know good and well that the only real advice I need is stop investigating your damn naval and write, you foolish woman. Some of it will suck; some will be brilliant. Most will be passable. Just fucking write.

I took that short break from blogging in the fall of 2010 and when it was over what happened was this: I found myself sitting at my keyboard, staring at the screen and thinking not about what I wanted to say, but how you would receive what I did manage to say, which is sort of like dropping a soggy wool blanket over a dancer: it stops all the art and replaces it with futile, ugly struggling. I tried several times to find my way back in, without much success.

I don’t know how one negotiates two desires that are so entirely at odds. I want to speak, and speak loudly, and be heard. I also want to hide under the bed where no one will ever have reason to call me names or fart in my general direction.

To speak and to be treated civilly is too much to ask if one is doing one’s speaking on the internet. All of us who put our hearts and minds into the public in this medium know that. If we haven’t experienced it directly, we’ve witnessed it.

If I wanted to do this blogging and writing thing with a bag on my head, I would have had to make that choice at the very beginning. I don’t think I would do it differently even if I had it to do over again. There’s nothing to do from here but shut the whole thing down, or take a leap back into the heart of the thing. I don’t know if the world needs my words or not, but I do know that I need to speak them. I am made of, for, and by words, and to be silent is to wither.

 

Even the knowledge of my own fallibility cannot keep me from making mistakes. Only when I fall do I get up again.
—Vincent Van Gogh

“The time has come,” the woman said, “to talk of bloggy things…”

Two birds with one stone here, folks. First, you’ll know how I decide what to share with you, my lovely readers, because apparently? Some people care (and care deeply!). Second, I’ll have a link I can email to said people when they express their concern about Carter’s lack of privacy. I’ve written on this topic in vague terms here and here, but it seems I need to be a bit more explicit.

For the record, just because you call it concern doesn’t make it so. Concern and criticism are different; please take some time to learn what that difference is. I have gotten some of each and really, there’s no comparison. The people who write to me with genuine concerns make me think, and deeply, about the choices I’m making and why. I have learned a great deal from reading and responding to those messages. The people who criticize me? You just make me want to punch you in the knees.

And how productive is that, really? I’m pissed off; you have busted knees; and no one is listening to you because you? Are a jerk.

Aaand now that I’ve gotten that off my chest, let’s move on to the matter at hand.

Every writer of creative nonfiction, whether for a blog or a book, a magazine, journal, or the family’s annual Christmas newsletter, has to make some big decisions. How much should I reveal of myself? Of my family? My children, spouse, parents, friends, siblings, co-workers, pharmacist, hair dresser, and the woman behind me in the line at the grocery?

How much? And what?

I would really like to think that readers would give me the benefit of the doubt (Most do, of course, but there are always those few who need to tell me all the ways I am wrong.) and assume that, while I may make decisions that are different than the ones you would make, I love my family and am making my choices carefully.

First? Let’s address the issue of my naïveté because that one, being completely and unequivocally wrong, is easiest. I know damn well where I am and what the internet is. I don’t share all that I do because I think nothing bad can ever come of that; I share all that I do because I believe (strongly) that it’s worth the risk. I have been victimized on the web several times, most recently about four years ago when a large cloth diaper company had its gallery stolen by a fetish site. Among the stolen pictures were more than a dozen of Carter. I know where I am; I did not just fall off this particular turnip truck. The people who tell me horror stories and call me foolish, ignorant, naïve, or (in one memorable case) a “hug [sic] fucking idiot” are wasting time and key strokes.

Can’t you feel the love? The genuine, heartfelt concern?

Sorry; sarcasm is my default state.

Anyway, back to it. To those who have accused me of exploiting my child for financial gain, I thank you. If you believe that I will, someday, make money off of this? You must think very highly of me. I do hope, someday (soon? please?) to make money from this habit of using letters and words to make stories. First thing I’ll do when the buckets of cash (snort!) come rolling in? Double Carter’s occupational therapy sessions.

I am all exploitative like that.

Let’s do my favorite one next because it’s amusing, and it’s the one I’ve probably gotten most often. A direct quote from one email, “Why do you share everything about his life? Doesn’t he deserve some privacy?”

I’m a wee bit perplexed. When did I say that I share everything here?  I do not. Perhaps it seems that way to people who are raising neurotypical children; some of things I’ve written here are dramatic, frightening, even shocking. It may seem like I’ve let the blog into every darkest corner of Carter’s illness, but there is more. Some of it is worse; some of it is simply private, and I have my reasons for holding back the things that I hold back. Sometimes the reason is that Carter said, “Don’t post that!”

My bright dream is this: someday, when Carter is an adult, he and I will write a book together. We’ll tell the whole story of his childhood, his illness, all the darkest symptoms and all the shining joys, but there are things I will not share without his adult consent.

This last one is sometimes very sensitive for many, many reasons, perhaps most easily understood by people in the special needs parenting community. We are constantly walking a fine line between the optimism that keeps us moving forward, and a realistic assessment of the possibilities.

That line? So fine that it’s sharp. I cut myself on the damn thing all the time.

People want to know if I’m not hobbling Carter, making his problems known and thereby causing him future problems when he wants to go to college, get a job, find a romantic partner, etc. I’m going to tell you something now that makes most people recoil in horror because it makes me seem like a pessimist: the likelihood that Carter will grow up and live independently is small. The likelihood that he will grow up and go to college, have a career, or have a stable relationship are much smaller.

In no way does this meant that we have given up on him. We are doing everything we can to help Carter gain the skills he needs to have a happy, productive life. I don’t really care what that means; whether he lives independently, in a group home, or with us, I’m all good. Suicide, life in prison, or losing him to the streets are the things I’m interested in helping him avoid.

In some sense, it seems to me that the work of public advocacy naturally falls more to parents of children who are seriously ill. If Carter was mildly ill and had fewer other disabilities, maybe I would choose differently. If he had a better chance of overcoming his many challenges and living an independent life, perhaps I would be more concerned about outing him before-the-fact.

Kids surprise their parents every day. If, someday, this blog is a stumbling block for Carter? I will be overwhelmed with joy and I’ll do whatever it takes to fix that problem for him.

I read quite a few anonymous blogs by parents of children with mental illness and I respect that choice. But I also know that it’s very unlikely I would ever be asked this question if what ailed Carter was cancer or epilepsy. Carter has no more to be ashamed of than any child with an illness of body instead of an illness of mind (and it isn’t like those two things are different, but I’ll leave that for another day). If he suffers from stigma, shouldn’t we blame the stigma (and the society that props it up in a million ways small and large) instead of his mom and her blog?

After the very best parenting that his dad and I can offer him, what Carter needs most from me is that I do my part to change the world. More health care services, better education, less stigma, more understanding…that’s what Carter needs.

I am only one voice, true, but I am one of thousands of people who are prepared to make noise until we die or things change, whichever comes first.

They are TOO talking about blogging!