Best Year Yet 2019

I think I did Best Year Yet for the first time in 2016. So this is my fourth year. I think I’m making better use of the process each year: for instance, last year I actually consistently set monthly goals, and reviewing how I did the previous month both qualitatively and quantitatively. I think it’s pretty ironic that I’m becoming the most well-organized I’ve ever been, at a time in my life where I’m able to actually accomplish so little. On the one hand, I feel like I “shouldn’t need” this much structure because again, not actually doing much. On the other hand, I know I need it because I don’t have the external structure of school or work, and because if I flake off on things it could directly harm my health in a more immediate, extreme way than I’m used to.

My first year, I got CFS. It was not my best year yet.

I can’t seem to get away from the sense of obligation to make the world better, on a global scale, even when I can’t hold down more than a couple hours here and there of unscheduled volunteer commitments, so that’s my focus this year — mostly on figuring out what I would even consider to be making a significant positive difference. Like realistically I’m probably not going to be able to single-handedly stop global climate change or bring world peace, but I also don’t want to just, I don’t know, be friendly to the people in my life and call that good enough. There has to be something in between that I can do, that’s different from what I would be doing if there weren’t really big global problems facing us. The call(s) to action can’t be ignored.

One thing is since I’m married and my husband’s money is officially my money too, I really should be upping my donation game. But that means talking about money and that’s scary. That was one of my top 10 goals for last year and I wasn’t any good at it then either. (I did have a donations-to-good-causes “registry” for my wedding rather than a gift registry, so that’s something.)

I’m hoping to be more organized: for instance, actually checking my mail rather than just letting it pile up. At some point I stopped going to worship anywhere on a regular basis, and I want to get back into that. I want to cook more and do grocery shopping occasionally (that’s not actually on my top-10 list, but it is something I want to do.) I want to be better about initiating contact with friends and family. I want to figure out how to follow the news consistently and without getting overwhelmed. I want to actually write fiction. I want to keep refining my daily schedule and adhering to it better so I can get more accomplished.

I have that all written out as actual specific things so that I’ll be able to tell whether I did them or not. I just figure the specifics aren’t terribly interesting to read.

I recently read Gretchen Rubin’s Better Than Before about habit formation and maintenance, and I have a lot of thoughts on that and how it intersects with goal-setting. Most of my goals this year are sort of process goals rather than project goals. (A project goal is “I’m going to write a novel”, a process goal is “I’m going to write for an hour every day” — the wording overlaps in an unfortunate way with process vs outcome goals, or then again maybe they’re the same thing. My focus is different though: process vs outcome is how vs what; process vs project is journey/everyday life vs destination/one particular special day.) There’s a lot of good stuff in there; I particularly like the bit about different types and how for instance some people do OK with holding themselves accountable whereas other people really need someone else to do it. I think I’m probably  a Questioner with Upholder leanings: I like to know why I’m doing stuff, I can get very resistant to doing something if I don’t understand the reason behind it, and I can sometimes be effectively self-directed. Emphasis on sometimes.

Semi-related, I was looking up Enneagram a few weeks ago and got frustrated because some of the “little” stuff about Type 4’s really hit the nail on the head (I tested into 4w5), but the core motivation doesn’t make sense for me, but the core motivation for Type 1 does, but the little things about Type 1 don’t (for instance, I’m not especially punctual or critical of others) so what does that even mean then? I think it means that this sort of typing feels more accurate than it actually is, unfortunately. I ran into a similar problem with Meyers-Briggs, because if you’re an Intuitive type you’re supposed to have a strong leaning towards either Feeling or Thinking but I’m right on the line. And I’m definitely Intuitive.

For those who are genuinely trying to improve themselves or have a better life in 2019, I wish you the structure and support you need to achieve your goals, and for those who are giving resolutions a pass this year, that’s cool too (I’m not actually convinced this sort of self-improvement effort leads to actual self-improvement more often than it leads to bonus helpings of guilt and shame, and people do grow and change without deliberate intention all the time.) For those of you who are telling people you’re going to make a change but you aren’t committed to actually doing it, why????? Eh, whatever, people do things because they work on some level, so if a lot of people act out the cliche of setting New Year’s resolutions and breaking them by mid-January, there must be some purpose for it. I like Best Year Yet though.

Just one thing

(I’m going through old drafts and publishing them. This one is from June 25.)

I’ve always had little things that are important to do but feel kind of scary or unpleasant so I just put off doing them. What I’m doing right now, and it’s surprisingly effective, is I set a timer for 1 pm every weekday (I’ve almost always eaten one meal by then; if I woke up late I might not have eaten lunch yet) and I pick one thing I’ve been putting off and I just do it. Sometimes it takes about two minutes; if it’s a longer thing I tend to cap it at half an hour because hey, I have CFS, I can’t do any one thing for that long. Also, I want to make it an overall pleasant experience.

My alarm is set to play a song I enjoy, so in theory (not always in practice) I just spend three minutes or so enjoying the song, maybe dancing around to it, before I start the Thing, and after I get to do something I enjoy, like play a game on my tablet. This lets me get pumped up enough that if the Thing is scary I sort of get a running start on it, and if I feel more stressed because there’s more things to be done than I feel relieved or accomplished, then at least I have something fun after. I’ve been pretty consistent about it in the few weeks I’ve been doing it. I give myself the weekends off. The alarm is helpful because that means I can’t just keep putting it off later and later, although occasionally I’ll notice it’s getting close to 1 pm and get started early. (October update: this is still on my daily schedule, and I still do it most weekdays. I don’t use the alarm any more, and I often don’t do the ramp-up song but I probably should. It’s particularly good for making phone calls.)

Actually it’s been so effective that I’ve been also setting an alarm for 2 pm to make sure I get my PT in. I think setting an alarm is most helpful for establishing a new or not fully established habit; I think it would be annoying to have a whole bunch of alarms throughout the day, but I can tolerate two (and it helps that they happen at the early end of my productive zone. I’ve pretty much given up on doing anything remotely challenging in the morning, although these days I am doing pranayama and chanting or singing first thing and a bit of journaling, which is pretty good given that I often don’t wake up before 10:30. Then my first rest is at about 11:30. If I get up earlier in theory I listen to a dharma-talk type podcast and color or knit or something. In practice I tend to just do random web-surfing. It’s a work in progress.

Today I cleared up some papers, magazines, old mail etc that had piled up on the breakfast table. It felt really good. I’m usually super disorganized when it comes to that sort of thing, I can have mail that hasn’t been looked at for months. So this is kind of a big deal for me. And it feels sustainable.

In other news, I have been getting a bigger “energy envelope” with the new medications, although I had a sort of regress a couple weeks ago that I think was due to stress. This past week I had two days, Wednesday and Friday, with an unusual amount of activity (walking, standing, social) and while there was some aftereffect, it wasn’t that bad. I don’t want to get too complacent about this but it does seem like I have more of a buffer against crashing/relapsing than I’m used to.

Of course, last year June was a really good month too and then things completely fell apart in the fall, so who knows.

I’ve also been keeping track of my to-do list in colorful mini post-it note form. Not very transportable, but since I make most of my “what do I do next?” decisions on the couch at home anyways, it’s working pretty well and it’s making me happy. The downside is sometimes I have more thoughts about what to do than I really have room for, so I may need to start having a sort of reserve area when I have more ideas about what I want to do than things I can reasonably focus on. (October update: I’m still doing that, and the pruning/delaying concept is still a problem. I should do a separate post about my health, mostly I’ve been keeping health updates in my personal journal.)

But there’s so many different disabilities, trying to be aware and inclusive of all of them is just too haaaaard.

Let’s talk priorities. We can send rockets into outer space when we choose to. We learned how to send virtual pictures of poop anywhere in the world instantly from hand-held devices. We have a vast interconnected system of paved highways, we have industrialized agriculture, we have airplanes for crying out loud. Flying machines, and we use them every day. We can do some pretty amazing things when we set our minds to it.

I’ve spent something like 18 years in a school of some sort, most of which were focused on general education, the things everybody’s expected to know. Some of that was focused on biology, including human biology. Some of that was focused specifically on health. I learned about the difference between aerobic and anaerobic exercise and what RICE stands for and I was required to pass a swimming test to graduate from high school. When I became disabled I had no idea what to do. It hadn’t been covered.

Disability could be covered in school though, thoroughly, at all levels. Living with it. Making the mental adjustment from being able-bodied to being disabled. An overview of what services are available for people with disabilities, and maybe a walk-through on how to apply. Dispelling myths. Etiquette on how to interact with people with various disabilities: do try to get down to eye level with someone in a wheelchair so they’re not stuck craning their neck, don’t inundate someone with a chronic illness with unwanted advice about supplements and alternative medicine.

When I first got CFS, all I knew about becoming disabled was that when you have health issues you go to the doctor. So I went to the doctor. I got lab tests, I got a lot of things ruled out. When it got to the point where I sometimes wasn’t showering for days at a time because I couldn’t stay standing for that long I said so. I think on some level I assumed that would trigger some automatic response from any doctor: oh, you’re having trouble with activities of daily living, ok that’s a problem, let me refer you to someone who can get you some help with that. What happened was…nothing really.

Doctors can’t possibly be unfamiliar with the basic concept of disability, can they? Surely they know that some people 1. have health problems that aren’t going to get better any time soon, if ever and 2. can’t do necessarily daily-living stuff on their own as long as those health problems persist. Surely they know that these people still need care. Surely they know that most of us don’t know who to turn to other than our doctors. Surely?

I got told it might be depression. I got massively offended at this, it seemed dismissive (as well as just inaccurate.) I sometimes get embarrassed about getting offended: if I believe depression is a real, serious illness, and I do, then why did getting told “maybe it’s depression” feel like my real, serious illness wasn’t being taken seriously? Then I read this and first, it kind of blew my mind, and second, it made it all make sense. If my fatigue that kept me from showering was rooted in depression, that wouldn’t suddenly mean I was capable of showering. I would still need help with the, you know, Activities of Daily Living and Instrumental Activities of Daily Living. (And I still wouldn’t necessarily be able to get myself to a weekly therapy session, thank you very much.) When I finally called about getting therapy, because it was becoming clear I was having depression issues on top of my CFS (because I was being treated like I was able-bodied when I wasn’t), I talked to a nice, helpful woman who pointed out that some therapists made housecalls but there was a waiting list. I was so relieved. It was the first time anybody I’d seen or talked to really acknowledged that yes, some people literally can’t do normal things because they’re too sick. It was the first time that I knew I was being believed.

(Because I was being treated like I was able-bodied when I wasn’t. Is there a word that’s like “gaslighting” but doesn’t imply intent? It was very unsettling and somewhat rage-inducing to know something is true (I had become disabled) and have everybody around me act like the opposite was true.)

I have sympathy for why doctors respond the way they do. I understand they want to help, and getting someone assistance with household and personal care stuff doesn’t seem nearly as helpful as curing them. It can feel like giving up. To some degree it felt like giving up to me too, and some of my depression was from having to let go of the idea that a return to full health was just around the corner. But within a month or so I started feeling dramatically better, not because I’d been cured, but because I started learning to live where I was. This is when I started using my folding stool, when I bought a rolling cart to do laundry, when I tested out washing dishes in a plastic basin sitting down (even though I only ever did that like once.) When I learned that I could shower sitting down.

From the outside it looked nothing like a cure, but it helped me feel better as much as a cure would have, because I was doing things I’d thought I couldn’t do any more. I could only do that when I switched from trying to get healthy again as fast as possible, to learning to live with the way things actually were.

Circling back to where I started. Priorities. When I was healthy and had a lot of physical and mental energy and a reasonable amount of free time and had an activist mindset as well, I spent about 0% of my time thinking about disability and accommodation. I didn’t really read up on disability rights at all. While there are some individuals who aren’t disabled themselves who spend a lot of time trying to figure out how to help people with disabilities (either from a “helping” or a “justice” perspective) the vast majority spend very little time thinking about it. I think I probably spent more time thinking about whether it made sense to terraform Mars, than I did thinking about how we could make life better and more just for disabled people on Earth.

It doesn’t have to be that way.

When there’s a “special needs” kid in an elementary school or preschool class, instead of trying to get that kid put somewhere else we could understand that part of the curriculum for young children is learning how to get along with all people, especially people who seem different or difficult at first. And that that starts with the teacher modeling inclusivity. (Or perhaps with principals, state assessment standards, etc acknowledging there might be some actual benefit to having special needs kids in mainstream classes, to the mainstream students, that might counteract a reduction in learning in other areas, because yeah some kids can make it really hard to teach.)

When we teach health, we can teach about disability. When we teach social studies, we can teach about disability. (I read something just the other day that I already can’t find again, about the distinction between “impairment” and “disability” — not being able to walk up stairs is an impairment, not being able to get to an event because stairs are the only form of access is disability. Likewise hearing/communicating etc.) When we teach history, we can talk about what the lives of everyday people were like in different times and places, including people with disabilities. When we teach manners, formally or informally, we can include things that are specific to people with disabilities. When we teach subjects like literature and philosophy, we can treat disability as a central part of the human condition and value what people with disabilities have to say about their own experiences.

When we teach medicine, we can teach doctors to be alert to when a patient needs help living-with rather than or in addition to recovering-from. I think if we get disability awareness sufficiently ingrained into our culture though, we won’t need doctors to help with that because we’ll already all be familiar with what resources there are and how to get them, just like I know that I can get a marriage license from City Hall even though I’ve never needed one before. It’ll be just another life skill.

The Cliff

Inspired by this.

About a year in, and I’m still trying to find words for the experience, conceptualize it.

One story I came up months ago as a story about a fall off of a cliff.  You’re standing on top of a cliff, in perfect health, able to see the whole world spread out in front of you. Then something happens, you trip or the rock crumbles beneath your feet, and when the dust clears you’re at the base of the cliff.

What you want is to get back to the top of the cliff, as quickly as possible. That’s where everything good is. Maybe you had a house on top of the cliff and the house was where you lived and you have to get back to where you lived.

But it’s a steep cliff, you can’t just climb straight up.

So maybe at some point you start walking along the cliff. And some part of your brain is going, am I back at the top of the cliff yet? No? Well, this is just a waste of time then.

Eventually though, maybe after a very very long time, you realize you’re just not going to get back to that house on top of the cliff any time soon, maybe never, and you’re getting tired of sleeping on the cold ground. You build a small shelter at the base of the cliff, tell yourself this is home now. And you cry, for a long time, because your little shelter at the base of the cliff isn’t nearly as nice as that cozy well-built house you had at the top of the cliff.

But then something happens, once you start recognizing that you truly aren’t living at the top of the cliff any more. You start to notice which way is up. When you walk along the side of the cliff, instead of telling yourself “I’m not at the top of the cliff, this is terrible”, you can see when you get a little higher than where you were at the complete bottom. So you keep walking that way. And the path doesn’t go consistently up, of course, it goes up a bit and down a bit and you don’t know if it’ll ever get you all the way back but at least you can see that it’s going somewhere.

I hit a turning point in late June. Up until then, I expected my health care providers to figure out how to get me back to full health, and I sorta figured it might happen pretty quickly, right? But they weren’t getting me anywhere and I was just getting worse. (In the metaphor, that would be “let’s check to see if there’s an elevator in the cliff. No elevator? OK, well, do you see a hot air balloon lying around anywhere? Stairs?) At around the same time, within a week, two things happened: the first was that I figured out I could still walk around Dolores Park if I took it slowly enough, more resting than walking. In other words, the base of the cliff wasn’t quite as unlivable as I’d first thought. Then, the most recent test came back negative and my new primary care provider refused to give me anything to test or check or try or work on before our next appointment. So I cried a lot, and also I decided I really needed to be doing my own research. I didn’t have a diagnosis, but CFS seemed more likely than anything else, so I started looking into that. I also became open to exploring alternative medicine, and while I didn’t have any immediate successes there I did notice that having a reiki session that didn’t seem to really fix things was a lot more pleasant than going to a doctor’s appointment that also wasn’t really fixing things, and I decided to prioritize among the things that might help, things that would feel good even if they didn’t. I went down to the ocean, I listened to guided meditations, I did yoga, and I took long hot baths.

Really the only things I do now for health that I don’t like doing are the limits, such as not making more plans than I can handle for one weekend. And I can see that that helps.

I still want to be at the top of the cliff, as soon as possible. It’s nice up there. But it’s nicer where I am now than where I was before I started walking.