I am (currently?) disabled

In late 2007 (I was 33 years old) I began having symptoms of fibromyalgia. In 2013, only a few years into my oncology massage practice, I was formally diagnosed with fibromyalgia, following two years of my (wonderful) doctor researching my symptoms and giving me a battery of tests and sending me all over Seattle (where we lived at the time) to specialists. In 2016 we flew to Palo Alto, California, to see a specialist at Stanford; he declared I had chronic fatigue syndrome.

I've been sick for about 16 years.

The severity of this illness makes it impossible for me to work. When we moved back to Oregon in 2019 I experienced some considerable improvement, enough that I attempted to finish my degree (my academic interests are (were?) folklore and linguistics). I handled a few online quarters with a single class, but two weeks into the first in-person quarter, I was crashing severely (with weakness and fatigue) and unable to continue. It took about a year to partially recover from that crash. I still haven't fully recovered.

Right now life is in somewhat of a holding pattern - a common experience for people with chronic illness.

I have difficulty writing about this

As someone with a instinctive need to point out elephants in the room, it's a source of confusion (and often distress) for me that I struggle to write about the two largest elephants in my own life: anxiety (panic disorder) and chronic illness. In person, privately with friends, I'm able to talk about both of these issues easily. More publicly, including online? Not so much.

Brené Brown seems to have been lifted from academic obscurity by espousing the message that if we embraced vulnerability as one of our core values, we would all be a lot better off as humans. I have enjoyed several of her books and I deeply appreciate her message, but my own experience with vulnerability has not been particularly rewarding. In eight different schools between first and ninth grade, being bullied imparted a very different lesson about vulnerability, reinforced at home as a single kid in a family where I was routinely criticized for being "oversensitive".

When, for various reasons, I thought it would be fun to start blogging again (writing this in autumn of 2022), I wasn't sure whether or how to write about this. I have read about other sorts of handicaps, "Don't let it define you," and yet, this does define me. It defines everything about my life. It is life that is in fact missing; all the things that would normally define me (a love of and constant presence in the outdoors - especially on the water - being the largest) that no one sees because I can't live them. This ache, this deficit, is everywhere present in my life and yet completely invisible to anyone outside looking in - a crushing pain that rests like a heavy layer of dust over this space in the world I inhabit.

I guess this page is my pointer to that. I can't describe it all. It's too hard. But it's necessary to at least point to what maybe isn't obvious, what's hidden behind everything else. The whole picture includes this invisible part.

The ghost of myself stands next to myself.

Created Autumn 2022