I met a couple of my friends back in the 90s when we were cooks in these popular local brewpubs which I won’t name. Let’s just say there are dozens of them in Oregon and Washington, and they are restaurant work dialed up to eleven. Something about toiling in this harsh environment slingin’ burgers and beers leads to long-term friendship—at least it did for us. I personally have a love/hate relationship with these pubs, they’re so kitschy and cozy inside, but I gave so much of myself, so many little offerings of blood and bone, metaphorically speaking, during my years working there. I look back now and realize I had no business being in those kitchens. But I didn’t know at the time I had Ankylosing Spondylitis, only that I was in a heluva lot of pain. At this point I often think about how different things could have been if I’d known.
Which brings me to my point. I now live in rural Oregon—wine country, specifically. It’s picturesque out here, but I’ve discovered something important about myself. I don’t like living in the boonies. I’ve tried, but it’s not for me. I recently went back for a visit, and all doubt was removed while I was there. I’m. A. City. Girl. I would not have ended up here if I’d known I had AS. We made our plans to move out of the city with incomplete information, which is a crappy way to make big life decisions.
Those of us with undiagnosed, untreated, or otherwise invisible diseases are left to do the best we can with only half the story. It took me years and a dozen doctors to get diagnosed. For whatever reasons, my complaints didn’t ‘land’ with many of the doctors I saw at first. It took time to learn how to be my own best advocate while also being a good patient.
So here I am, with not enough stimuli to keep my mind off chronic nagging pain, my precious friends are 75 miles away, and I swear I will not die in this funky little town. I’d rather die in a funky city, and be able to occasionally hang out in one of those goddam brewpubs before I do. So I’m making plans. . . with all the intel this time.