Living with Ankylosing Spondylitis (AS) is hard. These days I find the physical symptoms the easy part (if there is such a thing) of the management of my disease. Even in the worst of flares. It’s predicable, even as agonizing as it is. I can plan for it, plan around it, treat it with my own tried and tested formula. It works.
The hard(er) part is the emotional aspects. They seem to come from nowhere. Thankfully depression doesn’t have the hold on me as it once had. But I’m not immune to emotion, regardless of the expression on my face.
What bought on the tears? My son did. He’s five years old, and the eldest of my two children.
I adore my son. He makes me proud every day. Today was no exception. He showed me that he has an emotional maturity that I wouldn’t expect from a five-year-old.
We were doing our normal morning routine today, like any other day. He was eating his breakfast, and I was drinking coffee. I reached for pill box and took my morning meds. He’s asked me before why I take “medicine” every day. Normally I answer with something like “Daddy has poorly bones”. And that’s usually the end of it.
Today was different though. When he asked me at breakfast today, he didn’t do it in the same nonchalant manner that only a kid can do. This time he looked sad, and I could see the concern in his eyes. I knew this was the moment I would have to try and explain to my son that I will always be sick. There is no cure for Daddy.
Believe it or not, I’ve practiced for this day. I’ve put thought into it. Though I must say I never expected it so soon. It certainly caught me off guard coming today. Had it have been on a bad flare day, when I was struggling to walk, then I could understand it more.
Even though it was just a few hours ago, I don’t recall our conversation verbatim. But it went something along the lines of this:
Son: Why are you poorly, Daddy?
Me: Don’t worry, I don’t have germs. So you can’t catch it.
Son: If you’re poorly you need to stay at home today.
Me: It’s okay I can go out and take you to school, because I don’t have germs. I’m a different kind of poorly, I have a disease. That means I am poorly on the inside.
Son: Inside your bones?
Me: Yes, that’s right. Daddy will always have poorly bones, they can’t get better. But don’t be sad, because if I take my medicine everyday then I’ll be okay. And Daddy will be around for a long time, so I’ll be able to play with you lots.
Son: You should still stay at home.
Me: I’m okay now because I just took my medicine.
The conversation took a turn then, as it often does when you talk to a five-year-old. But I could see the water in his eyes dissipate. He understood. He cared.
I cried because I had so much more to tell him. But he’s too young to understand the rest without me scaring the hell out of him. I will never lie about my condition to my children, but I don’t wish to place unnecessary emotional burden on them, either.
I cried because I know I will have the same conversation with his younger sister one day. And many more conversations about it as the get older.
I cried because I’m sleep deprived.
I cried because I know he is genetically predisposed to the same affliction.
I cried because I can’t help myself any more than I currently am. There is no cure. AS is degenerative. It’s all downhill from here.
But mostly, I cried because I was proud of him. For asking the right questions. For caring about me. And for noticing. That’s a lot more than some adults do.