Upon further review.

  It's been 14 years now. I'm still living it, especially in February. At times I find myself going back even further-- how did I end up with his father? Because at least some of Jesse's story is about that chaotic moment in my life. I don't like disclosing, it took me forever to tell Jesse's brother what I went through.  Most people who know me don't know, in fact, that I was raped in the fall of 1981, and still traumatized by it when I met my ex. Now I look back and it makes sense, that I was alone and vulnerable and suddenly uncertain about all my independence and self-reliance. I didn't trust my own ability to judge people or choose friends anymore. So I rushed headlong into that disaster. It wasn't like people who knew him didn't warn me. One mutual friend told me I'd lost my mind. I think in a way he was right. PTSD works in insidious ways, and narcissistic abusers can sense weakness like that across a room with their eyes closed.

I was injured and didn't know it. I thought I was doing fine. Letting someone swoop in, so confident of himself and what to do, it seemed natural. I was being rescued, in my mind.  So when the other side, the real side, the manipulative, abusive, selfish side appeared, I alternated between believing I deserved it and demanding he stick with his nice side. I had no idea it didn't exist. That it was just a predatory sideshow.

 Two years of wasting my life fighting with him over whether I was worthy to be loved, rather than just walking away because I no longer believed I could. And then I was pregnant. I felt like I was drowning. All the time. It wasn't until years later, another friend took me aside and said, Look, he may not be hitting you but he's abusing you. You need to stop venting at us all and put that energy into leaving him.

I went into therapy It took me 5 years and second child to fight my way back to the surface. Predictably he tried to take the kids from me. Predictably he tried to destroy Jesse's trust in me. Predictably he couldn't quite pull it off because narcissists don't really understand the other people they look down on. He had no idea how to begin to destroy my younger son's love for me. Thankfully. Eventually their father died. So we all began the long journey to healing.

And just as Jesse and I were starting to get to know each other as adults, to process all the terrible things we'd both been through, he was taken from us.

Imagine I am a sentient, emotional robot. I can learn anything you teach me, but I can't imagine what you know, which is a lot more than me, about social cues.

So we play a game where you teach me about feelings: I imitate you, and learn to associate a feeling with a tone of voice, an expression and/or body language, and then later, I can understand that you have that feeling when you make that expression, use that tone of voice, or hold your body that way. And when I have that feeling, I do the things I learned from you, so you can understand my emotional state. The more you teach me, the more I can pick up. You may start to think I'm "just like you."

But the subtle, complex cues are hard. If you later show me a set of behaviors I've never seen before, or that are too hard for me to follow, I won't know what's going on.

Because you think of me as human now, you will think I'm ignoring you, or being mean. It can hurt your feelings a lot. Eventually you may show an expression obvious enough that I understand, but I won't know why you're feeling angry, upset or sad. I'll only know if you tell me. I may have to learn a subroutine called, "I can't read your mind, what are you upset about?"

No rejections.

Many years ago, my therapist (after 10 years of seeing her), told me "If you care about someone you better not reject them."

I didn't really understand that some of the things I said to people were pushing them away. These were things people I loved said to me all my life. Criticisms, complaints, nagging. Being autistic makes understanding this social stuff harder.

I had to ask her to spell it out to me, and I had to think about it for a long, long time. Watch it happen over and over until it sunk in. And I still catch myself doing it wrong. The coworker who asks me out to lunch when I brought mine -- say yes, not no. My kids who wanted me to play with them instead of reading. Say yes, not no. My mother, wanting me to pick up the phone.

There are nuances to this: people who invite you to something but don't mean it, really. People who ask to come along to some event but don't really intend to. Apparently you're supposed to say yes here too, and then just deal with it. This is complicated.

There are keywords-- come by "sometime", let's go for drinks "next month," "call me next time you're in town."  I imagine some people say this and mean it, and are disappointed when I don't follow through. I assume what most of them mean is "I don't dislike you and I don't want you to dislike me, but."

But they really don't know how to deal with my oddness, or my inability to read them, or anyone. Cues are wasted on me. It's their way of not-rejecting me. Sometimes I get it. Sometimes I've even used this method of protecting my distance. I like being alone because I don't have to ride the people roller coaster.

Back then, I was probably talking about my partner, back when I was the kind of person who got upset about how the dishwasher was stacked or who dusted the bookshelves last (it was always me, unless I nagged him). It took us oh, a couple of decades to reach a stalemate on things like that.

Truth is, we both get angry when we're stressed. We both let things build up. Because of my health, there's less i can do now, and he has had to take up the slack. So I try not to be that person. Still, when the frustration bubbles up from him, I feel indignant, rejected, alone. Only now I tell myself, this is how it feels for them if I don't keep my own house in order.

Regarding bad options

Once I got lost on hike deep in the Sangre de Cristos mountains, on a stretch where the slopes were overgrown with brush and trees. The trail had disappeared under my feet, and it was getting late. I stumbled into an abandoned campsite that seemed haunted -- why just walk away and leave all your stuff? Did they make the mistakes I did, and never make it back?

The sun had begun to sink below the next ridge, but I could see the bright sky and the last sunlight still lit the eastern slope. Ahead of me was a river of boulders that had cascaded down from above. No water, just boulders bigger than me, piling up to the top of the ridge. I'd have to hop from one to the next, hundreds of feet up, to get high enough to hope to get a glimpse of my campsite, or the trail. If I slipped on the moss, I'd break my leg at the very least, and no one would ever find me. Worse was what might live there. It would take me hours to climb that.

The only other option was to hike down the overgrown slope through dense brush I knew hid rattlesnakes, bear and elk, toward the foot of the ridge, to try to follow the river back to camp. I knew both options could end with me dying alone in the middle of nowhere. But at least the river had water, and it knew where it came from.

Diagnosis

I'm outside all the labels I've had stuck to me over time. The ones I embraced, and the ones that drove me away from everyone I knew, and every other place I've lived.

Weird, that's a good one. I didn't mind it. After all, I didn't want to be normal. Normal felt dishonest. It seemed to me then that everyone was "playing" normal out of fear. And I was not afraid.

But "weird" is what your family and schoolmates and teachers, everyone uses to mark you as untrustworthy, flawed, maybe dangerous. Weird lumps you in with creeps and serial killers and pagan goat worshipers. You don't even realize how you feed into that perception.

I was... possibly 50? When I realized that other people really meant and felt the things they said and did. They weren't afraid, mostly. The socialization was what they wanted. It was also when I realized they really meant and felt the things they said about me.

Justice isn't enough.

Justice would be for her killer to suffer exactly what she went through, while she gets her life back -- the clock winds back to August 2011, our collective memories erased of this last two years and all the horror and grief and fear, and the shattered, stupid wishes that she was still alive somehow. Maybe justice would be for people who attack  her family and friends, and make our suffering worse; and for those who pretend they know more than they do, who exaggerate their role in our lives to get attention for themselves, to  make themselves feel important-- that they should go through the same thing they've inflicted on others, and we get our  lives reset to before any of this happened. Her with us and whole, us never knowing what we do now about human nature.

Maybe real justice would be all of us getting our wish to be there that night and protect her. Because that's what haunts everyone who knew her, and don't mistake that, every real friend, everyone in both families, her father, her fiance--we all want to have been there to stop her from stepping out that door. Everyone but the person who actually showed up.

With bright colors large against the blue

It only works because there's nothing in it

this hole in the sky that lifts you up
past comfort
forces you to see
how small you are in the world
but not quite high enough to
understand
how small the world is
beyond the land

A silken cup of air inverted
above a fire
A basket full of your life and
bags of sand
all held together in
Twisted strands that cross the crest
and somehow form the bones
that shape the air and carry all the rest.

You rise, and don't quite know
where you will go
float beyond the reach of trees
and trust the wind

Listen: trust the wind
does that sound wise?
But still you rise
and hope for forward thrust.

Someone below
chases along,
disturbs the road no more
than a finger drawn along an arm

She follows the fleeing ball of air
She cannot see you
but believes you are still there.
You both know
there really is no
other way home.

(still working on it)

Thought for the day

I feel like I should keep track of these little ideas somehow. This one's relevant, something I've often seen in myself and others:

Confusion is the first step in learning.

When we're confronted with something we've never seen before, we may not see it at all.  Or we may see it, but ignore it. Or misinterpret it with our old set of beliefs.

When you do recognize a new phenomenon or fact as an unknown, you feel confused and try to make sense of it. Let's say someone speaks to you in a language you don't know. Are they babbling nonsense? Or is it your lack of knowledge?

People don't like to feel confused. It signals a lack of control. But confusion is your friend.

Confusion is your mind's way of telling you it's time to learn something.

The question is, how do you deal with it? Do you try to explore this new thing? Work hard to make sense of it? Or do you dismiss it, because it doesn't match what you already believe or understand? Or do you work hard to force it, to make it appear to match your previous beliefs? Do you argue it out of existence?

It's easy to imagine someone with a rigid need to feel control, dismissing the foreign language as nonsense.

But what if it's important, just in a form you don't understand?  By demanding the world conform to you, you miss that information, even if it's a loud, shouted warning that your house is on fire.

The more you ignore those confusing facts the further you move from reality. Confirmation bias is the psychological term for being unable to see clearly when a fact doesn't fit your belief or theory. Here's an example. Let's say you're looking at a friend's Facebook page, and you notice she stopped posting in public at a given time. Your belief might be: no public posting means she's not at her computer any more.

As every teenager knows, there's more to a computer than Facebook. Unless you have her computer, you can't really know whether she went offline.

You can't see whether she was on a different Web site, or using other software on her computer after that last post. But the longer you go on convincing yourself she wasn't, the deeper that belief becomes, until you can't be objective any more. You've built a whole theory of her evening based on that one moment in time. But it's wrong.

It's not logical or helpful to assume she stopped using the computer just because she didn't post again. And even less logical to draw larger conclusions, but you have. And you've announced them to the world. Your own conclusion, based on the only fact you have at hand, becomes a stumbling block to finding the truth. The more you crave the appearance of control/mastery, the harder you will work to believe your presumption. It blinds you to a degree.

And now you've put your name behind that theory, so you can't easily admit you're wrong. Say you've accused an innocent person of something horrible, based on that tiny, tiny fact. And everything that happens, and everything you hear seems to further prove you are right. You've veered off reality because you can't admit you're wrong, you don't know enough, you can't think clearly. You're not objective. You want to be right. And that in itself has caused you to jump to the wrong conclusion. And now you're trapped by it.

And even worse if you don't sort facts from gossip. We all know that the more often something is repeated, the more it seems to be a fact. So the more people you have offering biased information the harder it is to wade through it to reality. Soon, an imagined event becomes very real in your mind. You think you remember someone saying something that seems to fit in your theory. So that becomes a fact too. If it doesn't fit, then it's just someone making things up. Your theory becomes more real to you than reality. You know with all your heart and soul that you are right. And everything in the world seems to tilt toward your being right.

But there are tests, even if you can't see her computer. You can still examine the actions and comments of sources who do have access. A friend of hers, who chatted with her on AIM or Google Plus later that night; an IT professional who can see her activity log and what programs she was using. Other friends who texted with her, talked on the phone, or on Skype. There can be any number of sources and activities that inform or contradict your first assumption.

Let's say you distrust some first-hand sources, but others are reliable. You can use all their reactions, statements, behaviors,  and decisions as a way of determining reality, much the same way you can tell whether another person is behind a tree when all you see is their shadow. The more first-hand sources you have, the more likely you are to get a close approximation of what happened after that last FB post.

Or you can choose to stick with your previous belief, and ignore any facts to the contrary.

Let say some sources say, "she was working on a project on her computer" or "she was doing something but it wasn't homework" or "we have verified his statements are true" -- you might dismiss it as not matching your lone Facebook fact, as unreliable information. But when a reliable source with full professional access to her computer,  and good reason to examine her activity closely, takes the trouble to say your "unreliable" sources are being truthful based on conclusive evidence, what are your choices?

Your choices are: A. stick to your belief and pursue unreality or B. try to figure out why the reliable source doesn't agree with your belief.

Is the reliable source now unreliable if they don't confirm your beliefs?
Do you tear apart their statements trying to find an interpretation that makes it seem they're speaking in code, in secret agreement with you?
Do you assume they're agents of the unreliable source now? Is there some vast conspiracy now, some coverup that encompasses every first-hand source?

As the balance of statements and behaviors from various first-hand sources continue to pile up against you, do you dismiss it all, ignore their actions and statements? Do you look for loopholes or more complicated scenarios your theory might fit into, or accept the simple fact: if there were evidence that confirmed your belief, it would have been acted on.

The more you fight that possibility, the further you go in the wrong direction. Next thing you know, you've wasted days, months, years, trying to support an untrue belief.

Win one

So I'm back with no shortage of things to say about Corona virus and what it will be like when all our hospitals are lined with gurneys full of the sick. Just like the 1980s only this time, the old and comorbid. This, kids, is what dishonesty looks like. Then we had Act Up. Now, we have Act Blue. Go vote.

Cancer propaganda hate

Here's why I hate the rosy portrait of cancer survival you see everywhere nowadays.
1. it's a lie, medically speaking. Survival means you made it 5 years. That's not the same thing as being cured. Doctors use that artificial milestone to make themselves look better. Don't believe me? Google it.
2. Cancer treatment center ads make it sound like if you do the right things, or go to the right center, or spend the right money on the right doctor, you will be cured. (Therefore, it's your fault if you're not. A little bit your fault. Or maybe a lot, but you're dead and also you can't sue us.)
3. They make it sound like cancer isn't such a big deal. It's curable! Look away, and forget there are causes. Causes that you as one person have very, very little control over. Look how healthy random former patient looks now! They're eternally indebted to us for saving them! (It's still your fault.)
4. So what if the environment is so toxic that you lose the cancer lottery, it's NBD! We don't have to regulate, we can just fix the random outliers who succumb to it. Plus sunshine can give you cancer! The cancer centers and societies might as well be bankrolled by the very corporations that are destroying the air, land and food and water supply-- oh wait, they are!!
5. Come to our center and spend everything you got. Did we bankrupt you? No worries, we can use you to blackmail your family, too. And your neighbors, your community, entire nations of running, walking, telethoning suckers.
6. Special hate goes out to the meme that cancer is a lottery, and it's just your bad luck you got it. There are causes, and we are making more of them every day. Eating them, drinking them, pouring them into the world around us. Shirley Jackson wouldn't need to edit much.
7. One more thing: cancer doctors who treat patients like experimental animals because, hey, they're going to die anyway. They don't state this to you overtly when you're in their facility. But they think it, and they act on it. Worse, they don't really know why you're sick, and they don't really know how the shit they pour into you or cut out of you changes that, or for how long, or what it's going to do to you afterward. All they know is you have no other option but to die.

But then, I'm not the most objective person in the world.

Why I cried today

Today I ran into a beautiful person I haven't seen in two decades at least. Her name is Carol. I don't know if I've ever known her last name. She was one of the moms at the playground in Washington Square Park when my kids were little. We recognized each other over the vegetable bins at the Whole Foods store in mutual disbelief. We both blurted out how we'd thought of each other recently, then shared the explanatory anecdote. Then she asked me about Jesse.
There is a thing you do, when you know about loss, to help each other not cry in public, while still communicating the depth of sorrow and sympathy you share. It's the secret face of womanhood.


The reason I love her is that I was nursing my son in the playground one day, and an extremely well dressed man came over to me and started verbally abusing me for doing so. I didn't know Carol, but she walked over to defend me just as I held up my hands, one arm cradling my son's head against my breast, middle fingers extended and told him, "Like fruit? Have a pair!"

Working things out in dreamland

Last night I dreamed I had been told I have 4 days to live. So the very first day, I made a list of all my assets, from bank accounts and 401k right down to items of clothing, and who should get each one. I wanted to be sure no one would be stuck with the burden of sorting it all out. The next day, I had my family all around me, and began to tell them I had 3 days left. I wasn't sad, or angry, just wanted to be sure they knew I loved them, and that they would be okay. Then a doctor walked in and told me that I actually only had one day left. Still I felt no fear, no sorrow, no senes of loss.  I was glad they were there to hear it, and to understand what was happening. I went around the room hugging everyone and saying goodbye. The first person who came to say goodbye was Jesse.

An evaluation of options for the drowning.

Therapy patient: help! I’m drowning!

 Family: Why can’t you stop drowning! Nobody else is drowning!

Western Religion: Stop drowning!

Eastern Religion: There is no drowning; there is only drowning

Psychoanalysis: How long have you felt you were drowning?

Gestalt psychology: Maybe drowning is where you need to be right now.

Short term behavioral therapy: What strategies have you used in the past to avoid drowning?

Psychiatry: here are some pills that will help you forget you’re drowning.

Recovery movement: you can save yourself from drowning!

Cognitive behavioral therapy: try feeling for the bottom with your feet. Too deep? Try floating on your back. Did that work? Good. Now try floating on your back and kicking your legs. Good.  The shore is about 20 feet away. Point yourself that way and keep kicking.

Religion vs morality

I took the Catholic religion *very* seriously when I was a kid. My parents and grandparents on both sides were deeply religious, without any religious hypocrisy to point to in their lives. They didn't leave it in church in the least. But for me, by the time I hit high school/college, the "truths" of religion meant less and less to me, so that by 21 I believed that religion was a crutch for people who had trouble having a relationship with God. So I raised my kids without a religion. We made sure they knew and respected the history and beliefs of the major religions, but in the process of teaching them how to make good moral choices in life, I began to see that what everyone was calling God was kind of a false idea.

It seemed false to me to pray for anything except acceptance of God's will. Praying to God for your life on earth, when heaven was supposed to be so much better, seemed wrong. I tried to believe in an intercessory God that you could petition to avert disaster, but when my sister in law died and another in law declared it was because she didn't pray right, I began to see the contradiction: either you are a servant of God's will, or you are trying to manipulate God. Either you in your pride think you are better than those who suffer in this world, or you humbly accept what God sends your way, and devote your life to helping others who are less fortunate.

I could go on about this, but the point was: who did I want to be, and what moral tools did I want my children to have? They both, as they hit their teens, told me they were atheists. At first it scared me, but it didn't change who they were. They were making mistakes like any teen, but they were good people, making themselves better as they grew up. The other atheists in my life were also the most moral, least hypocritical people I knew. They suffered less, spiritually, than those trying to force their religion to fit what they knew was right and wrong.

When Jesse got leukemia the first time, I really believed in the power of prayer and faith. By the time he died, I realized that it's an illusion. Nowadays I see atheism being used as a political definition, or even as a kind of religion. So maybe I should call myself something else. Non-theist, maybe.

February 9th- the day between death and the funeral.

I have a message for the world untouched by grief: back the hell off. Grief is not a disease. It isn't a crime. It should not be forced into dark rooms and discussed in whispers. It shouldn't be eradicated or drugged out of existence. It's the province of the grieving, a place you may be invited to, but you have no business barging in. Much less pretending to rule.

Modern psychology is full of shit: grief is not something you need to "get out" right away, it's not a tumor made of words that you must immediately pry out of someone who has been through a tragedy. It's not your job to make a grieving person "talk about it." You have no right to tell another person to "get over it" or that there's a time limit to "normal" grief. You can do more damage forcing a grieving person to "relive" the events in order to "fix" them, than by ignoring them altogether.

Grief is not a thing you get rid of in six months like a bad hair cut. Do not tell grieving people they should be "get over it" just because your magical timeline says so.

There's no need to pretend nothing happened, but do not assume you have the right to pry into another person's grief just because you know about it. If they're not talking about it, do not, especially in public, bring up their grief and try to make them "talk it out." You are not the special grief whisperer. Yes you can make me cry in the middle of an otherwise good day, but that doesn't take much talent. And it doesn't mean we have a special connection. It means you used my weakness to create a false intimacy.

If you ask me how many children I have and I say two, but then explain that I lost one, be respectful. Don't just ignore it; say something, however awkward, to acknowledge me. I will be grateful no matter what it is or how stupid you think it will sound. To me it will sound like a gift of common humanity. It will feel like a hug. I will appreciate that you, a total stranger, made the effort and paid respect to my pain.

If a grieving person chooses to share their feelings with you, realize how much trust and love is in that sharing and be honored, and accepting, and unjudgmental. Listen to what they have to say, ask questions if you need more in order to understand. But most of all listen, every word they pass on to you is a gift. One day, unless you die very young, grief will visit you, and wreck everything in its path; and every emotional gift that grieving friend once gave you will become the power tools you'll need to rebuild your life.

The vigil, day 1, year 7.

On this day every year since 2007, I thank the people who came to me on what, up till that moment anyway, was the worst day of my life. Particularly the friend. who was there when no one else was,  and Jesse's high schoolf friend Alex, whose last name I can never quite remember-- and all of Jesse's friends, and my family, who turned that grim corner of the neuro ICU into a loving vigil of Jesse's gypsies-- you all kept me whole in those horrible days. You will always have a home.

Tentative steps.

I had to take a cab in the snowstorm to get to work, and my cab driver was from Mali, in West Africa. We talked about his life and mine, and our families, and he told me that his father had two wives, as way of explaining his family over there. I said, well the Koran says you can have more than one if you can treat them fairly and equally. He seemed surprised that I knew this, but, he said, you can have up to four! And I had to laugh because of course, I can't.

I can understand though, if I lived in a culture where life was so dangerous and meager that a woman by herself couldn't protect and feed herself, it might make sense to join the large family of a man who could feed me and my kids, and protect me from the dangers outside the walls. As an atheist and a feminist, I find it morally appalling, but when I walk a little ways in their shoes, the culture makes sense. It wouldn't help them or me for me to start telling him what I see as wrong in his family system. I wouldn't learn anything, and I wouldn't have climbed out of his cab feeling a little more connected to the world. That was a gift.

I don't know how much of my truth is only cultural truth; I'm not sure I'm able to see all that well.

It doesn't get better, you just get better at dealing with it.

Seven years.  There's a deadened layer of forgetfulness: was it MLK day when he went into the hospital? The day after? I go into the room where I saw him the last time before the hospital call. In my mind he will always be there leaning back against the table, looking tired, thin, pale. Why didn't I see it? Why didn't he? If he'd gone to the hospital that day, he might be alive now. He was tired he said, from finals. He had lost Lisa already. He wa trying to move on. In my mind I reach to him and hug him and beg him to see a doctor. In reality we just chatted-- he still kept me at arms length. Even at the hospital, he complained to friends on AIM that I was there all the time. He didn't understand why I couldn't leave him there. He would have had to live 30 more years to understand. So many decades stolen from him. A large part of my future taken from me. If he'd gone to the hospital a week earlier, it would not have been the last time.

I think, by the end we both realized that his life would be in and out of hospitals. I think, in the end, he didn't want that life.

Dream life.

I can remember dreams as far back as age 3 (scary little-girl-eating Sinclair dinosaur chasing me through my neighborhood). That one was in black and white, but they're almost always in color, sometimes even with physical sensation (once Captain Crunch punched me in the ribs to prove I was awake and woke me up), and even taste (particularly chocolate and bacon). My dreams often have entire story lines, sometimes an entire life (not mine) involved. I see people's faces, hear their voices, have relationships with them (not necessarily anyone I know in reality). Sometimes I can read from pages, sometimes I speak French or play musical instruments, fly, breathe underwater... but the only thing that I find really strange is that I can travel around in the dream and come back to the same place, and everything is still the same in the room, or on the street, wherever I return to. How do I do that???

I've read that dreams like these are considered a sign of mental illness. In which case I'd rather be crazy, it's more fun.

Read to write.

Bad writing is everywhere. You can find it without even looking. But you have to go out of your way for good writing. You have to seek it out, and absorb it, and remember it, immerse yourself in it, so you'll know the difference. And so when you're the one doing the writing you'll know when it's going wrong.