This is the internet weblog of Bix Frankonis.

What If Even Things I Care About Break Me

Since starting an unplanned sabbatical from my nonprofit in the middle of January, I’ve not had a mental health day as low as any of the recent days beforehand.

For almost a year, I’ve been tracking my moods in an app called Daylio. It then generates charts and graphs based upon the average mood of each day. The math on that means it’s not immediately clear when any given day might have had an incident I marked as being Awful (I edited the default moods into a progression of Awful, Bad, Meh, Good, Great; I have never had a Great mood), but it does give a helpful overview.

It’s especially useful for noticing trends, or for spotting months that were overall smooth versus months containing wild swings.

Looking back at the past three months, November was generally steady in and around the middle, December fluctuated wildly into Good and Bad, with January being somewhere between the two but with some significant Bad but also some noticable Good. (Even the good days, however, can debilitate.) This is a fair representation of what relocating an entire nonprofit project involving construction and moving both material and livestock is like: November was a lot of stressful planning, December was the bulk of the actual construction and move, while January was final steps and setup.

What happened in the middle of January? That’s when I had that rager of a meltdown, was chided and disrespected for it, unceremoniously announced I was unavailable for the rest of the month, and then deleted Slack from my phone and muted certain people in Messages.

I’ve since spent my time only making sure to keep the books updated. No chores, no communications with the team, no social media updates for the nonprofit. I’ve only been doing, I guess, self-care. Although that’s had to happen without visiting the goats, because I didn’t need to end up running into anyone.

In the days since going on sabbatical, I’ve not come anywhere near to a sobbing breakdown except once, the very next day when I went on my weekly mental health trip to the zoo, dropped money on the farm tour (in order to visit someone’s goats), and then they failed to show up and tried to tell me it was at a different time. Mostly, as this was literally the day after I temporarily quit my nonprofit, it was a pretty terrible moment for the zoo to choose.

All of this was from working fewer hours than a part-time job, mostly of the labor on the weekends, on a project that I personally care about.

Social Security, however, believes that I am not disabled and am gainfully employable, a determination made solely from my original diagnosis in 2016 and an assessment in 2018 by an Oregon Department of Human Services hired gun based on their “consultive exam” that lasted maybe ninety minutes. No one talked to Vocational Rehabilitation or to my therapist from during and after my job placement about how that attempt at employment sent me spiraling headlong into an autistic burnout that continues to this day.

It’s bad enough that being a midlife-diagnosed autistic means there is no paper trail, no documented evidence of disability or impairment. There’s only the anecdotal reports from one’s self and one’s family. Are my three decades of work history replete with “Unsuccessful Work Attempts” (a Social Security term of art)? Yes. Are the few exceptions the result of happenstantial (and unreplicable) mitigation of some of my impairments? Yes. Social Security, however, could not possibly care less, because there’s no outside contemporaneous confirmation of these struggles.

Given the lack of acceptable pre-diagnosis record, how can Social Security possibly consider it valid or appropriate to make a disability determination without examining what there is of a post-diagnosis record?

This initial disability determination by Social Security is under reconsideration, and I did what I could to point out current records and resources they didn’t check the first time around. Of course, my request for reconsideration was submitted just before the federal government shut down, and it’s anyone’s guess what that does to the timetable.

Meanwhile, in just a few days, as January comes to a close, I need to make a determination of my own.

How involved can I be in The Belmont Goats going forward when the costs of involvement even in something that matters to me might be too high for my own good? How high would be the cost to my mental health of walking away?

What happens if I have nothing, and then Social Security determines again that that’s all I deserve?