Susan's Blog

Tuesday, October 2, 2012

A lot of questions

My terrible OCD returned for a little while the last few days… it’s like an itch in my brain that I cannot get to. Why is it here? I don’t really know. I don’t want a therapist to tell me, either. What I want is peace.

I realize that there is stress in my life that may be contributing. Duh, you think??? Max and Nat are so far away in one way or another and it is hard to talk to 14 year old Ben without pissing him off. They were all here for so little, and also for so long, I can’t believe it’s so quiet here now.

Quiet, for me, is sometimes a little like death. At times like this, I fall into a deep pocket — it has the softness of my home, but I can’t get out of it, either. So I force myself to go out, to ride, to drink coffee outside. To work. I go around blaming my writer’s block, the way I used to blame my parents! It’s none of that. It’s just that there are these feelings, of very deep anxiety.

I do wonder, on a deeper level, is this the way life is supposed to go? There are very few models of family + adult autism out there. Everyone would nod if I mention missing Max, or Ben’s new distance, but no one feels quite right weighing in on what’s going on with Nat, except to give us compliments. Which I often just don’t hear. Sometimes people’s opinions on how I take care of Nat are just like platitudes. Sometimes they’re mean, too brusque. It’s hard to get it right with me.

Sometimes, forgive me for this, but it feels like I’ve just kind of set him up in a little play house so he can act like he’s living a real life. Oh, how horrible for me to feel that way. And of course that’s not true about Nat’s life. He’s working, and doing a lot on his own. But because there’s so much help there for him, it makes me feel like sometimes I’m — lying? Finessing it a bit? How much does he know about his life? What does it look like to him?

Does he have the ability to look at his life and compare to another’s? Does he feel Max gets more from the world? In a way Max does get “more,” but in a way, Nat gets “more.” For one thing, Nat is known by so many more people, because of my writing! And he is loved and admired, I can tell. But what does he know of that? Max, on the other hand, must really know his effect on others.

I don’t know where Ben fits in this; he came along so long after his older brothers, who were practically twins. Max and Nat just feel sometimes like two sides of the same coin.

And when Max or Ben acknowledge Nat in some kind way — that’s the purest joy I know. It is so rare, too rare. “Hey Nat, ‘sup?” says Max. Or Ben laughs at something Nat said that’s funny. Like when I showed Nat a picture of this spider, and asked him what it was, he said, “Owl.” Ben laughed pretty hard. My heart just blew right up into my throat. Happy anaphylaxis. It matters so much to me that my three eggs love each other. That makes me feel more real. Their birth, after all, is probably the most meaningful part of my life.

What else am I supposed to be doing with my life? Is this terrible psychic discomfort I have because Nat is settled and because I just am not?


Hi Susan, Staying busy does seem to keep worrying at bay, but jeez at this point in your life downtime could become your friend. I’ve been pushing people to get massages lately. They are a great resource for relief from stress. I have to get one every month (whether I can afford it or not)in order to just veg out and relax…it’s so healthy to just go into the “zone” for a while. Just a suggestion I thought you might like. Hugs.

— added by Candy on Tuesday, October 2, 2012 at 8:14 pm

Beautiful sharing. Thank you .

— added by Jody on Tuesday, October 2, 2012 at 8:24 pm

Does it seem like when chaos is at bay, you feel sort of useless? I’m a problem solver, a go getter. I fix things. But sometimes a lull can make me feel very nervous. I get anxiety attacks a lot.

Sometimes I fill the lack of chaos with new problems, like I’m thriving on chaos or like I’m don’t quite know what to do without problems to work, like a rubrics cube.

We’re soldiers, fighting our battles and when the leave time comes, it’s hard to breathe. Maybe it’s the fact that we’ve all got PTSD from living this high intensity life. We know we can fight the battles, but it’s hard to relax when you don’t know when or where the next attack is lurking.

— added by JanetBowser on Tuesday, October 2, 2012 at 9:31 pm

JanetBowser said it so well the only thing I can add is that even on mild days I still feel like I am waiting for the other shoe to drop.

— added by Row on Tuesday, October 2, 2012 at 10:34 pm

This is great!!! So I’m not the only one who feels/thinks this way. Just knowing that makes it a bit better!!!!

— added by eileen on Wednesday, October 3, 2012 at 9:08 am

Susan, I’m de lurking to say hello, nice to meet you and yes, I know that deep, soft envelope too. It can be suffocating, disabling. We pour ourselves out, reshaping ourselves to accomodate and then suddenly we are done until the next time. There is no steady pattern to count on, just signals to watch for and this watching becomes our alternate function. When we have nothing to see on the horizon we become disorientated, turned sideways.

— added by Naomi on Wednesday, October 3, 2012 at 6:48 pm