Monday, 20 January 2014

Hanging on a moment

Friends of mine have been talking about Kelli Stapleton and how much we miss her. If you don't know that story, you can find it here. Suffice to say, she got to a huge, ugly, despairing place, and made a colossally bad decision, that led to an unconscionable action that could have cost her and her daughter their lives, and has cost her and her family a great deal of pain and legal consequences. She has been vilified by many, but many of us in the blogging community who counted her as a friend have tried to understand the cause and will keep supporting her in her struggle to get past this, this terrible moment that changed everything.

It hasn't been a great week, or month or whatever lately. I have had a migraine that registers a steady 5 spiking to 8 (for those who don't have a pain scale, I envy you) since before the holidays. I endure. I rally. I survive. I spend some of my time curled up in the fetal position under a blanket in a room as dark as I can get it, at least until the kids find me. I have days when I cry a lot. I have days when the pain leaves the rest of me numb and stupid, and I just barely function well enough to keep us going.

The Kitten has taken to biting so hard she breaks the skin, even through clothing. So far she has restricted this to her parents, but only because her brother won't get near her most of the time. She has just started to show the head banging behaviours that her brother started to show around this time. It is really, really hard to watch her follow that path. I still don't know how to deal with it. The strategies we used with the Monkey were essentially, ignore unless injury is immanent, redirect, distract, restrain. He grew out of the worst of it, more or less, when he started to communicate better. It makes sense. The intense frustration of not being able to convey your needs in a way that others understand must be overwhelming.

To get to what passes for a point, it has been tough. I won't say it is either more or less difficult than what others deal with, because I know plenty of folks who have it tougher, who suffer more, who are hurting and fighting and in the end, we are all doing what we can.

Thoughts of suicide have crossed my mind. Hell, there hasn't been a time in my life when they haven't been there, at least in the background. Depression is a bitch. It robs you of energy, motivation, and hope. You find yourself reacting to things in the most negative possible way. I snap at my family, indulge in my own self injurious behaviours. I get into the negative feedback loop: I am crabby. I hurt people's feelings, I feel guilty, I get crabbier, my behaviour gets worse. I feel sorry for myself, then feel stupid and frustrated by my own self pity. I take that frustration out on the people around me, and on my own body. And so on.

More than once, I have reach that moment of crisis, that crystal clear, knife edge of insanity that whispers, "They would be better off without you. It hurts too much to go on. You're an utter and complete failure, and there is nothing worth redeeming." That moment, that pain, that thought.
If you were to look at me at that moment, and judge me by my state of mind, my actions in that place of pain and hollow emptiness, you would say I was a terrible human being, selfish, stupid, blind to the love and support that is all around me. And you would be right. But I am not defined by that moment. There is so much more to me than the person I am when I hit that ultimate low point. When I am outside of that moment, I do, and I am, some good in the world. I am as kind as I can make myself be, I care deeply and I love unconditionally. I have been incredibly fortunate, and am infinitely grateful for the intervention of friends and medical professionals who have pulled me through those terrible moments. But in that moment, wrapped in pain and failure, I am barely human. I am not capable of rational thought.

That is the moment that took Kelli to a place that no one should go. That turned her, in the eyes of much of the autism advocacy community, and much of the rest of the world, into a monster. Somehow, that moment negates anything she was or did before it. From a fighter for her family, to a killer, a demon, a hater. ONE MOMENT. One act of despair. One terrible mistake. Why do we define a person by a moment, without any knowledge of their state of mind, or their character and actions before that moment? What gives us the right? I am not perfect or innocent. I have done things I am not proud of, and have thankfully been given the means and opportunity to make amends where possible.

I won't judge people by their worst moment. I know what it is like to be there, and I know that is not me, and not them. I may not find their actions forgivable, or understand what got them there, but I will not say that losing sight of reason in one terrible moment defines them.


  1. Great post. You are so right on- we cannot judge people in their worst moments. And we've all had worst moments- even if they don't look the same.

    Sending love.

  2. Va-jay-jays my friend. Sending BIG ones your way!! ((((({})))))

  3. Wonderful, honest, thought-provoking post. Thank you for opening yourself up, for your transparency.

  4. I also have a child on the spectrum. Your words resonate with me. Please keep writing....