The past year has been good for me in terms of my ankylosing spondylitis. Just saying that out loud makes me wonder if I’m jinxing it. But the fact is that it was a good year. I was very mobile for the most part. Pain levels rarely were over a…
I’ve kept this column positive for a while now, not only for you, my readers, but also for myself. If I keep my head up and find the wisdom beneath the trauma, then all will be well. Most of the time that’s true. But I have a bone to pick…
It’s easy to say that if people can’t understand us, we should just forget ’em. Unfortunately, people like — and to some extent need — their friends and family. So, it hurts when people with ankylosing spondylitis (AS) experience a flare-up and have to cancel plans. Cancellations are met with…
When you’re searching for others who understand the AS experience, you probably want to see something real — not something sanitized or generated by pharmaceutical groups. There comes a point when articles and information shared by doctors just feel a little empty, devoid of the real perspective. You ask yourself:…
The other day, my friends, my boyfriend, and I traveled from New York City, where I live, to Minnewaska State Park Preserve in New York State. And I’m glad that we did — the need to get out of the city is real! I have missed green trees and…
Some people just don’t get it. Maybe others try, but the majority don’t. If you don’t live with a chronic or degenerative disease, it can be hard to wrap your mind around an invisible illness. When you’re not actively sick all the time, it’s easy for people to think you’re…
Travel is particularly brutal when I’m in a flare-up. When I’m feeling OK, it’s still hard but more manageable. With a partner whose family lives in Brazil and the U.K., I go to Europe at least once per year. I travel pretty frequently within the States as well. The ability…
I realize that the title of this column is hyperbolic, but it contains an element of truth. I often think about how we get to know our daily pain on a deep, intuitive level. We can guess its patterns and ways of expression. We can understand where it came from…
As a poet myself, it warms my heart to have learned that Simon Armitage, the U.K.’s new poet laureate, has ankylosing spondylitis (AS). I know of few writers who have the disease, and to see someone like Armitage living and creating, despite AS, gives me hope. I won’t…
I am a big fan of ritualized living. I even wrote a book about it, “Light Magic for Dark Times,” which includes a chapter on body and identity, largely inspired by chronic illness. To me, ritual is a wellness habit. When we embrace ritual, we are actually embracing time…
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