We have no choice but to move along the best we can with what we have.
AS’s components are complex but its effects can be pretty simple.
With proper medication and exercise, it’s simply just another part of my life.
The first thing I want to say about what it means to me is I’m not in pain and I’m grateful my genes give me an body that’s very healthy in almost every way (as in I’m not plagued by chronic diseases except for Ankylosing Spondylitis (AS) and my mid-body pudge is minimal and I still ahve a healthy head fuill of dark hair).
When I think of AS physiologically, I often think of it in pretty simple terms. Its components are complex but its affect on my body is rather straightforward.
In its extreme manifestation, AS causes someone to suffer a lot of physical pain and deformity, not to mention the associated emotional pain that is related to all of this. In a less advanced state it demands that the person become aware of its presence and can therefore cause a lot of anxiety because of what the future may hold. There is no cure for AS, though it can be successfully managed. Worrying and the stress it brings, of course, just makes things worse. We have no choice but to move along the best we can with what we’re given.
And that’s what I try do, to move along the best I can with what I’ve been given. Just a daily part of my energy is given to my AS. Be this in my nominal daily stretching and exercises or when a perfect stranger makes the inappropriate (and incorrect) estimation that my life “must be hell” because of AS. My natural way isn’t to give one part of my life too much energy, except for my creativity, or the people I care about. So when something comes along demanding a lot of energy, I have a choice to e stop and explain to them or brush it off and keep on with what I was doing.
So I’ve decided, with the help of fine friends and knowledgeable medical people, that the energy I’m giving to my AS will be on my terms because it is after all my life and the body I possess. Though AS (as well as any other physical challenge) can cause me to feel helpless and frustrated (popup here), I’ve come to accept the awesome notion that the cells that make up this body of mine are going to do what they are going to do, that it was written in my genetic code years ago (decades, centuries?). I can accept this or reject it. I can accept the fact that these cells are scripted to behave in certain ways or I can fictionalize these processes into my own illusion. I choose the former.
But my cells and genetic code actually are in pretty fine form by and large. I don’t have the need to fictionalize any part of it because it’s certainly good enough as it is. Actually it often surprises me, its resilience, its capacity for adaptation, its ability to allow me to feel so much joy at any given moment. AS gives me as much pain as I let it. Its simply another part of my life.