“What makes you so special as to not need the same care and consideration as other people? (And I don’t mean the experiences you have had, I mean what do you think is intrinsically so special about you that you don’t need care and consideration. I don’t so much care what other people have told you as what you tell yourself at this point)”

Well, fuck. Thanks for putting me on the spot. Hahaha. Uhm, err…

Ok, this is actually kind of hard to admit and I feel awkward and stupid and silly. I do actually think I am special. I do actually think I am tougher and stronger than other people. I keep going and I keep working long after other people stop because they “can’t” any more. I mean… other people have phrased this in ways that I like and that I agree with, “You have all the force of personality as a star being born.” Yup. I mother fucking do. (Sometimes people say nice things to me in addition to shitty things.)

I believe I am capable of working no matter how much pain or distress I am in. There is a point where I slow down and there is a point that I stop but that point is long long long past the point when all medical tests say I should have stopped months or years ago. I am absolutely freakishly strong. It’s not that I can dead lift more than other people (I can’t) it is that I have a single minded focus and ability to put aside all care for myself and WORK. I am not always a nice person when I do this.

I believe this is part of how my ancestors, who were frankly despised folk a lot of the time, kept surviving when lots of folk wished them dead. We can put our heads down and work and make it through and fuck you very much.

My medical support team (there are a lot of people in it) have been trying to talk me into doing less for literal years. They have been pointing out the growing irreversible damage and hoping that noting this will slow me down. It has had… some effect on my behavior. But then I pick up a project and blow through things like you wouldn’t believe.

Some folks have asked me if they could hire me to do art in their houses. I said no. The way I work is extremely deleterious to my body and you can’t pay me enough to cover the medical care I need to survive it so I can’t give that labor to you and put the strain on my family. It’s not fair.

Why do I take such pride in cleaning my own stupid house? Because when people walk in and gasp and say “Oooooh, I can’t believe how clean and tidy and inviting your house is” I swell with pride. I did that.

I feel like if I am paying someone else to do the cleaning I don’t have as much right to the pride. I want that pride so badly.

My mom spent a lot of my childhood crying because she didn’t have the time or energy or money to have a home she could be proud of. That was a major wound for her. In some way I feel like I take so much pride in my space because I am trying to heal that wound, that isn’t even exactly my own.

But you and Jenny and Pam are right. Paying house cleaners is cheaper than paying for physical therapy and massage and chiropractic care and acupuncture and therapy for my kids after I have hysterically screamed at them to clean their shit up.

This sense of pride really has to evolve. I am struggling with that. It is hurting me and my family at this point.

I can hold on to being nice when my pain level is consistently above a 5. It’s hard and it takes effort, but I can. When my pain levels are higher than that [meaning a lower number on this scale] (I like this scale: https://www.theacpa.org/wp-content/uploads/2017/08/Life_Scale_3.pdf ) I don’t hold on to being nice very well. I don’t do very well when I can’t do work. I feel bad about myself.

Like, I should have tapped out of the road trip long before it finished. I was at the point of having a black ring around my vision because I was damaging my body so much that it was impacting my ability to see. I was a bitch. I had no patience. I slapped my daughter when she sat down to rest and I thought we needed to finish work before I got to rest so her sitting there casually was an absolute affront. I am not saying that to be prideful. Slapping her was wrong. But I don’t hit my kids on the regular. That was a major department from my normal control.

I need to change my perception of my ability to work because I need to not get to that point again.

What do I tell myself that makes me so special? Why do I deserve less care and consideration? I tell myself that I am a tool. A tool with an absolutely absurd ability to accomplish work. And you don’t love your tool. You use them up and throw them away. The trouble is that my family really does love me. They don’t want me to be thrown away. They want me to be around for decades. If I continue to damage my body like this… I won’t be. It’s just a simple, literal fact.

“In my own struggle with ADD I’ve learned that sometimes wanting to change the system is just a distraction from whatever I’m trying to actually get done. It’s a handy distraction I can really get involved in and suck up all my time instead of just doing the other things. I consider it a red flag to get too bogged down in reworking the system. Not that l don’t ever change it, but I try and wait to work on the system till after I’ve pressed forward on the thing I’ve been avoiding. If I still want to change it, I will, but often I don’t want to any more”

I know what you mean. My problem is that a lot of things are falling through the cracks right now because for years I had an excellent white board system that kept me from forgetting up coming stuff and currently I am trying to write things down on paper and then I never look at that piece of paper again and… that’s a problem. I do need a system. I am not able to have a wall system while we travel.

I am trying to set up Omni Focus (a computer based tracking system Noah loves) because I am on my computer and this lets me set up things with greatly delayed notifications so everything doesn’t feel like “Do it today or it will never get done.” Yes, in some way it is a distraction but it is also solving an actual problem I’m having right now. I’m struggling with keeping all the various levels of schtuff in a place where I go back and look at it. It’s been a problem for the past six months since we took the white boards down. A lot of things have fallen through the cracks. The kids are doing ok with their level of commitment on paper, my task lists are really complex and have many sub layers. I need a new system. It’s not a distraction it is important.

Also, I am an organization nerd and I am having fun thinking through whether things are parallel, sequential, or single action. That’s a useful way for me to process the things that are going on for me. It’s also forcing me to think through things like: physical therapy isn’t “one more stupid thing to do” it is mandatory for me to feel good and be happy. It is solving a major life goal because I can’t be a good mother or a good wife or a good friend if I feel bad and I am miserable.

Cleaning the table after meals is one more stupid thing to do.

Getting shoes that don’t rub me raw and give me terrible blisters in the rain is not one more stupid thing to do. It’s part of making sure I feel good so I can be happy.

It’s useful to try and tell the difference between these tasks? I’m trying to think about tasks in terms of what goals are they serving. I don’t think I have done that in this way before. The web copy on the Omni Focus website is absolutely nauseating in how it phrases things but it isn’t wrong. Mind mapping my goals in life is really important. Thinking through how my behavior enables or supports or inhibits different goals is really important.

Like: I truly want to rewrite Outrunning Suicide before the kids start school. I would like to co-write it with them. That means I have 14 months. So I’d better figure out how to schedule that work now. Or I will run out of time and never get around to it. I want to write a book that is teaching life and coping skills for kids in their current age bracket. I can’t think of better co-writing partners. (I briefly mentioned to them quite some time ago that I would really appreciate doing this and they said they would really want to help me do this. Both kids want to help with the phrasing and with illustrations.)

I have a lot of things I get distracted by in my head. It’s useful to be able to map it out, put a due date on it and stop thinking about it until it is time to think about it. Right now with the paper method I am having to keep thinking about it or I will forget entirely and never do it. So we’ll see.

Thank you for challenging me.