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Monday, December 17, 2012

On Mental Illness, Our Sons, Honesty, and The Internet.

Over the weekend, I'm sure many of you saw the viral post "I Am Adam Lanza's Mother" written by Liza Long. Here's the link to the reprint on Huffington Post for those of you that maybe didn't click through. To have this post make sense, you should take a minute and read it.

As always, I'll wait.

Anyway, I read that post, because at times I can be macabre and I don't know, something pulled me to it when I saw it mentioned a couple of times on Twitter on Friday. And in that post, my heart broke for that mother and her son, that the options presented to her and her child in the wake of very apparent mental illness were so abysmal  that her pain and confusion and general loss -- for words, for options, for a lot of things -- was so apparent.

The post clung with me throughout everything I read during the day Friday, and I told Kyle about it, talking about her bravery on being so honest about her life and her son and her story, because isn't that what this whole blogging thing is about, anyway, right? For us to be heard and seen and to talk about the hard things if we so choose?

I saw a lot of myself in that mother. The frustration of dealing with a special needs kid to the point of emotional exhaustion, the blatant truth-telling about your life and your relationship with your son however tumultuous and non-perfect, how hard parenting is when you aren't given a perfect child, but one broken in ways that may never be reparable.

And then, then something truly disgusting happened.

Another blogger, whom I refuse to link to, decided to take excerpts from Liza's blog and completely distort them into a character assassination on the mother, saying she was sick and an awful parent and needed her children taken away from her. She used posts that, to me, were very apparently written in the tone of sarcasm, hyperbole, and dark humor that is so often found with parent bloggers (and more so by those with special needs kids) and twisted them into some sort of "proof" that she was a fame-hungry exploitative woman who was destroying and slandering her children for her own benefit.

To most of the internet's credit, many readers of that second blog post took the author to task, telling her that she was pretty much being awful and using one woman's story after a national tragedy to basically drive up her own traffic and somehow make herself bigger than the whole story. Sure, there were some commenters who agreed with the second author, but most did not. The second blogger wrote a cheap follow-up post saying her concerns lay only with the safety of Liza's children and their online reputations and their privacy being violated, but as much was never expressed in that post or the follow up, just vitriol for a woman who was brave enough to tell her story and talk about her deepest fears as it comes to raising her difficult child.

I write openly here about my mental illness and about Kiedis and his issues. Yes, I worry about privacy from time to time -- for reasons like it recently coming to my attention that some of Kyle's students read my blog (yes, I know about you, and I'll get to you all soon) -- but in the end, when he and I discuss it, we both agree that being honest and open about our lives is in line with our values and the integrity with which we try to live our lives.

Because talking openly about these things is the only way to destigmatize them. We can never achieve understanding and compassion for special needs (including mental illness) if we never talk about it, if we let other people shame us into keeping quiet and never reaching out to others for support, and maybe most importantly, help when we need it.

I should know. I've been bullied this way.

When Kyle and I almost got divorced, one of the very first things his mother tried to use as leverage against me was this very blog. She claimed loudly and forcefully that my own words would illustrate how unstable and unfit I was as a mother, and that would be all the evidence she needed to keep my son from me.

And I let her intimidate me. I shut down this blog for several months -- I exported the archives and deleted it, terrified that somewhere something I had written could be completely misconstrued and that really, she knew anything about what she was talking about. She did work as a social worker for CFS here and does so where she lives now, so I believed the worst and I let the one thing that had sustained me throughout Kiedis' difficult pregnancy, birth, and infancy be completely cut from my life, creating a gaping hole that I wasn't sure I'd ever be able to refill.

You see, I let fear and public shaming keep me from my own story, my own truth, and I let that bullying tear me from the only community I had found that openly supported me and consoled me as I struggled with parenting a medically fragile infant. In the wake, I found more people physically around me to help build that community -- but my writing and my storytelling has suffered ever since, because she planted that seed of self-doubt and fear of repercussion in me, that being open and honest with my feelings was somehow wrong and made me a bad parent and would result in me losing my children.

It didn't matter that I was in the throes of postpartum depression; nor as a mental health professional did she make any move to help me in a positive light -- she just started throwing out threats and making blanket judgments about me as if I wasn't a real person because I suffer from mental illness, and I was incapable of being a good parent because I own my struggle and talk about it without shame.

So now, when I talk so openly (and yes, even painfully so for me, as I cry when I write many of these kinds of posts that leave me so vulnerable to judgement and reliving the horrors of that time) I do so with both bold defiance of that shame and the shame that society tries to impose on people with mental illness, and with the intention of being an example of someone who lives a fairly normal life with mental illness, who loves her children and husband and pets with an ungodly passion and who wants all of the same things that other parents want for their kids. I also do so so that I may be heard -- because these stories are what need to be heard all of the time, not just in the wake of tragedy, but as a part of the fabric of parenthood in the present day, as part of the narrative of parenting on the whole. Things are not always perfect. People are not always equipped for what is handed to them when they birth a child, especially when that child is atypical and has complications, and the more that we pretend that parenting is always a walk in the park, the more disservice we do to those of us for whom nothing has ever been a walk in the park, and to the community as a whole from whom we need compassion, understanding, and support, not judgement and finger-pointing.

I am heartbroken a million times over from this weekend's events. And a large part of the discussions that need to be had in this country involves mental health issues -- how we treat people with mental illness, both medically and socially, about resources and availability for all members of society, not just those with healthcare and finances, and about what it is in our society that is allowing this kind of tragedy to happen again and again without any real change.

But in the mean time, I rage for Liza and her family, against the attacks on her mothering abilities and her right to use her voice to talk openly and honestly about the hardships that come with raising a mentally ill child while dealing with mental illness yourself. I look the detractors in the eye and I challenge them to do this job that no one signs up for, to be broken and always fighting to be less so; to do your very best to raise your child and to watch things progress out of your reach or realm of control and to have to make hard choices about your child and their care. I ask them to live with the fear of being misjudged and labeled on a daily basis, and I ask them to live in apprehension of the kind of damage a small child is capable of doing.

Because until you break down after physically restraining your child from harming himself or your other children or even you for the umpteenth time with no change, no end in sight, and you cry yourself to sleep from feeling so helpless and something else no one talks about -- riddled with guilt because what if he is truly broken and what if he gets that from you, that it's your genetics that are robbing him of normalcy -- and you so carefully have to balance every. single. day. to make sure both you and he can survive it for the rest of all time -- you can kindly keep your holier-than-thou sanctimommy judgments to yourself, thank you very much.

No one asks to be dealt these cards, for themselves or especially for their children. But they are dealt none the less, and we try our hardest to do our best jobs with grace and understanding and tenacity and compassion and just hope, for better days and breakthroughs and that someday things might actually resemble something close to normal.

Until then, try listening. To us, to our children, to the communities that surround these issues and our lives, to our stories as we live them and working on compassion and understanding. Then maybe, finally, we can get somewhere as a society beyond these terrors and these stigmas and we can work together to make things better for everyone.