Aleijado (Crippled)

conversations with hank harry potter ankylosing spondylitis #spooniememe #ankylosingspondylitismeme


(over dinner)

Hank: Mama, are you not hungry?

Me: (drinking my second serving of soup from a mug, using two hands) No, I am hungry and this mushrooms soup is delicious.

Hank: But you don’t want any of this nice food you made? Just soup?

Me: (debating whether to lie or be honest, choose honesty) I had to take some paracetamol and now my stomach hurts. I used my hands too much today and I can’t use a knife and fork anyway, so I am very satisfied with soup and bread.

Pai: (wincing)

Hank: My friends at school ask me why you’re, you know, aleijado (crippled). They see you walking around town and they always ask me. I tell then it is your disease. I say, “She has a disease called Rheumatiod Arthritis and one I cannot pronounce.”

Me: Ankylosing Spondylitis.

Hank: I can’t say that.

Me: If you can say Tyrannosaurus Rex you can say Ankylosing Spondylitis. Think of it like a Harry Potter spell (adopting a British accent, using my swollen hand to arthritically spell cast) Anka-low-sing Spawn-dow-light-us!

Pai: Espondilite Anquilosante (Ankylosing Spondylitis).

Hank: But the Rheumatoid Arthritis is what causes your pain.

Me: No, they both cause chronic pain.

Hank: But you um… coxear (limp) because of the pain?

Me: My left hip and pelvis are fusing together. When I only walk short distances I don’t really limp that much but when I walk for longer than a city block my hip gets really stiff. I don’t limp because of the pain I limp from stiffness caused by Ankylosing Spondylitis.

Hank: Oh, so what is the Rheumatoid Arthritis?

Me: Cheat sheet to what is going on with me as of now: my neck, back, hips and pelvis are Ankylosing Spondylitis issues. My feet…

Hank: Oh yah, your feet hurt all the time! That is why you walk around barefoot in the winter on the tile floor.

Me: Right, because it is the same as icing my feet when they are burning with pain.  Cold helps lower or sooth inflammation. The Rheumatiod Arthritis issues are my feet, ankles, knees, shoulders, elbows, hands and sometimes my jaw.*

Hank: I don’t know what inflammation is.

Pai: Inflammation is a biological response to harmful stimuli. With your mother’s diseases her immune cells confuse her joints and other parts of her body as harmful and attack them. That is where her pain comes from.

Hank: Oh, so right now you have to be careful because your hands hurt so that is the Rheumatoid Arthritis?

Me: Yup. I over did it today and now there is so much inflammation in my hands that it is very difficult to make them preform properly.

Hank: And inflammation means pain. Your hands hurt.

Me: Pain and swelling in my hands make it hard to preform fine motor skills like cutting food with a knife and fork and not dropping that fork on they way to my mouth.

Hank: SO that is why are drinking your soup and not eating it with a spoon.

Me: No one every called you dumb, not one day! It is also why I took a paracetamol. (attempting to change the subject) This soup is very good if I do say so myself.

Pai: I love your mushroom soup.

Hank: It was really good, mom, but will you be okay tomorrow?

Me: I am okay right now.

Hank: But you’re in pain!

Pai: Hank, your mother is always in pain.

Hank: Not always.

Me: (deep sigh, loving that he didn’t know) Always: Every day, all day, when I wake up until I go to sleep without fail I am in pain. Some days more than others, some places in my body more than others, but always in pain.

Hank: But…

Me: But I laugh and sing and joke and work and refuse to stop living my best life because of pain. My life is too good and it is amazing how people are able to adapt. I am so used to pain by now it is just something in the background. Don’t worry, buddy.

Hank: I didn’t know it was all the time.

Me: That is because I am too busy having fun and enjoying every second of my life. I am not going to let a little thing like pain stop me.

Pai: Hank, don’t worry, your mother in is good hands and listens to her doctors and is…

Me: As well as possible. I am as well as possible and my attitude makes me even better! So you can tell that to your friends that when they’re curious about your mãe americana tonta e aleijada (silly, crippled American mother).

Pai: You can tell them she is unstoppable.

Me: (smiling, sipping soup, feeling loved)

Hank: They all think she is the coolest, anyway. They all want to go Casa de Memória and make pottery with her and they are all jealous that she can make brownies any day I ask, even better than at cafés or in the store, and she is funny and you are, mom, you’re really funny. I guess they just aren’t used to your walking.

Me: That is it exactly. Thank you for helping your friends understand.

Hank: Thank you for helping me understand. (stuffs his gob with salad)

Me: (cautiously raise my mug of soup to my mouth with two hands)

Pai: (winking at me)

Me: (winking back)


*Before those of you educated about RA/AS say anything, of course I know RA also affects my organs and my eyes.  Although I choose to be honest with Hank I also don’t want to scare him.  He’s ten.