A Visit With Uncle Chuck!
On Memorial Day this year, I visited with my uncle, Chuck. You should know that I am 62 so as you can guess, Uncle Chuck is a little older than I am. It is a strange twist, but Uncle Chuck is only about ten years older than I. I am sure that subject will come up later as you get to know Uncle Chuck better but for now just understand that we are closer in age than you might expect.
Second, you should know I barely see Uncle Chuck. He does not live in Indiana, so it is rare we see each other, which is fine because we do not have a lot in common. Still, when we see each other, we tend to talk a lot about mostly nothing. Then he travels back to his home state, and we do not visit except occasionally through email. It has been about three years since the last time I saw him, so we had lots to talk about. Here is my memory of a part of our conversation, I bet some of it will ring true for you as a person with AS.
Uncle Chuck: Hey Rick, how the heck are you? (Uncle Chuck does not say heck so that part is made up).
Rick: Dude, I am doing well; it is good to see you, Uncle Chuck.
Uncle Chuck: How are you doing with dia-bet-ees? And don’t you have some of that "arr a?" (Uncle Chuck tends to slur his words sometimes)
Rick:My RA seems to be under control of late. I have good and bad days. I am very proud that I have been able to live with type 1 diabetes for almost 45 years. It is a constant thing that I have learned to live with.
Uncle Chuck: Hey, what is going on with your ankles?
Rick: Oh, that is all fixed. I broke that about two years ago and while diabetes is causing feet issues, my ankles are doing well.
Uncle Chuck: That is not what your dad said.
Rick: Well, you know my dad passed back in 2016, right? I had not even broken my ankle when dad passed.
Uncle Chuck: Well I ain’t been talking to him since the fun-er-al, and he said your ankle was acting up really bad. Are you telling me he was lying to get attention?
Rick: Well no, I never knew dad to lie for attention. Are you sure he said it was my ankle?
Uncle Chuck: Yeah he said you could hardly stand up much and he thought you might get you a brace or something.
Rick: Oh, maybe you mean, ankylosing spondylitis? He might have been talking about that. But that hurts my back not my ankle, per se.
Uncle Chuck: You had your back broken? I had that when I fell off the roof.
Rick: No, my back has not been broken. Ankylosing spondylitis is a disease that can cause problems all over my body but hurts me most in my back. It has been a significant issue for me since I cannot take the typical biologic drugs for it.
Uncle Chuck: Yeah that insurance can sure mess you up. Did you get the pills?
Rick: No, I am using an infusion to help me out, but it is not meant for ankylosing spondylitis.
Uncle Chuck: Why you take them confusions then?
Rick: Oh, infusions, I take them for the RA.
Uncle Chuck: So what do that got to do with your ankles?
Rick: The doctor makes me.
Uncle Chuck: I hate dem doctors when they make me do stuff, like stop taking dem pills when I fell off the roof.
Rick: Yeah that is awful.
Uncle Chuck: Sure as heck is.
Do you use the word disability to describe your AS?