When The Pain Mysteriously Disappears
There have been a few times when I felt almost no pain — and a few months of painlessness that led me to believe remission was possible.
The pain tends to go away or become very mild when I’m very sick, usually with an infection of some sort. This has happened when I’ve had COVID-19, shingles, and bronchitis. It happens sort of gradually, this shift to painlessness.
Sometimes it happens at random
It’s not as though all of a sudden the off-switch is hit, but there’s definitely a change in my immune function. It’s as if my immune system is busy focusing on other problems, like foreign invaders, or latent infection.
Other times, AS is just teasing me, showing me the life I've had become, reminding me of the absence of suffering. It can happen at random, not necessarily when I've done "everything right" — like eating well and keeping active.
When it happens, mysterious as it is, the pain and mobility issues just sort of slowly vanish...into a memory. A dream within a dream. There isn’t a true a-ha moment. I don’t suddenly feel like an athlete, or like I can do backflips.
It's like I just don't feel my AS
While I was sick with shingles or COVID-19, I just didn't feel AS. I thought it'd make AS worse — all that sleeping and being sedentary, but it didn't. In some ways, it was, of course, a gift. I didn't have to manage both at the same time. And in other ways, it’s an ironic reminder that I’m different, that my body is different, that my body works in strange ways. When these strange periods of remission hit, my other symptoms and issues sort of disappearing too. My eye issues, my gut issues, my brain fog all diminish.
When it happens, it's as though I just come to the realization, “Oh, I’m not in horrible pain," and then I struggle to remember when the pain last reared its head. The experiences feel very much as though I'm acknowledging a vacancy, a blank space, a void where the pain once was — as if the pain is part of me, as if it was always meant to be. It's almost as though the pain has become an organ.
Sometimes this absence makes me sad — to know that this is what I’ve lived like — pain-free — for years before I was diagnosed with AS.
Do other people feel free?
Sometimes it's what I imagine others must feel: free. Free to move and go and plan. Free to live a life without medication and worry about their spine become one long, immobile rod of fire. Aside from the random neck pain or back pain from sitting too long in a chair, most people don't experience the pain from AS — but it's become so natural, so second nature, that it feels strange that there is a world without it.
And yet there is. There absolutely is. Before I got sick, I've lived it without taking stock, without gratitude, without acknowledgment — because how do you feel grateful for what isn't there? After my diagnosis, though, I'm grateful for a day that doesn't make me feel like I'm turned to stone. It's a fickle thing, the body experience — and I'm grateful for its lessons and mysteries.
Do you use the word disability to describe your AS?