Article

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.

Article

Dramatic Entrance

giphy (3)

Reenactment of Molly’s dramatic entrance as played by a 17th century courtier of Versailles.

 

Me: (in bed due to pain and fatigue on a level of having spent the day breaking up boulders to the size of softballs, by hand with a sledgehammer and then bending to lift and transport those softball sized rocks to another location one at a time)

Molly: (throwing open my bedroom door dramatically) I here! I here, mommy!

Me: Well, hello little one! Did you have a nice nap?

Molly: It morning time. Good morning.

Me: It is afternoon time. Good afternoon.

Molly: (mountain-goating onto my big bed)

Me: Little Ms. Molly MaGoo, I have a question.

Molly: What your question?

Me: Today, are you a fish or are you a chicken?

Molly: I not a fish. I a mermaid.

Me: Oh yes, now I see it.

Molly: You see my tail? (kicking her feet) It porple.

Me: I do see your tail. Look how strong you are.

Molly: I strong. I chicken, too. I chicken with mano (brother) and I mermaid and I Amália.

Me: I am so happy to hear it.

Molly: You play with me?

Me: Of course!

Molly: I go get my cars and books and (pinching her fingers together and making her voice squeeky) teeny tiny small things and come back and we play. Okay? (batting her eyelashes and grand gesture nodding)

Me: I can’t wait.

Molly: YAAAAAAAAAAAY! (using the covers to repel back off the bed,running out of the room, curls bouncing) One second, mama. I be back! Onnnnnnnnne second.

(and we played and read and laughed from my big bed for the rest of the afternoon which was the best of all possible medicines)

Article

Pratos no Forno

 

A cookbook for oven baked dishes.

A cookbook for oven baked dishes.

 

(door opening, Pai and Hank tumble in from grocery shopping)

Me: Howdy, boys.

Hank: (shopping bags banging against his legs) MOM, you cannot come into the kitchen because we have a surprise and we need to get it ready for you.

Me: Oh, thank you, but I have a story I am DYING to tell.

Pai: Tell the story from the hallway.

Hank: Yah, just no peeking at what we’re doing.

Me: Roger that. So, while you were out our friendly, well-meaning Circulo de Leitores guy (door-to-door book salesman) came and he hands me a book and says, “Para te (for you),” and I didn’t order any books so I hand it back to him thinking he has the wrong house, but then I see [Pai’s Name] on the receipt.

Pai: Yah, I…

Me: Wait, don’t ruin my punch line. So, I say, “Ah, meu marido deve ter comprado esta série. Vou pegar o dinheiro. (My husband must have bought this series. I will go get the money).” But then he says, “Maravilhosa, uma surpresa para te. Vai receber um por mês. Esta série é uma das nossas mais vendidas (Wonderful, a surprise gift for you. YOU will get one a month. This series is one of our best selling).” And then I realize he is saying this because you bought a cookbook.

Pai: Guilty. Tell me, did you murder our poor Circulo de Leitores guy? Is there a body I need to dispose of because you are too arthritic?

Me: No, it’s not his fault he isn’t awake to the changes in the world. I reminded him, “Senhor, tu sabes, eu não leio os portugueses bem. Eu entendo e eu falo melhor do que eu leio. Meu marido não comprou esta série para mim, ele comprou para ele mesmo e tecnicamente, eu estou pagando por ele, então eu estou comprando um livro de receitas para o meu marido, que ele deve usar para cozinhar para mim (Sir, as you know I don’t read Portuguese well. I understand and I speak it better than I read. My husband did not buy this series for me, he bought it for himself and technically I am paying you for him so I am buying a cookbook for my husband which he shall use to cook for me.).”

Pai: What did he say?

Me: His eyes were as big as saucers.

Pai: I can almost feel what you said next. Did you…

Me: (interrupting) So I said, “Talvez-tu devesse comprar esta série para cozinhar para sua esposa, pois é das suas mais vendidas (Maybe YOU should buy this series and cook for your wife since it is one of your bestselling).”

Pai: I knew it! What did he say?

Me: His eyes were as big as dinner plates and he laughed.

Pai: As if a man cooking for his wife was the funniest thing he had ever heard?

Me: Exactly.

Hank: Wait, I don’t get it. What is wrong with a man buying a cookbook? I love cookbooks. I love cooking and I will be a man. Ricardo cooks for Ana.  Papa cooks for us. What is the big deal about papa buying cookbooks?

Pai: You and I are the reason the antiquated ideas of gender and who should do what will end.

Hank: Sure… Okay. (quickly changing gears) Mom, you can come in now, your surprise is ready.

Me: (entering the kitchen carrying Pai’s new cookbook, sarcastically) You mean I get two surprises in one night? One patriarchal and the other…

Hank: NACHOS with guacamole!

Me: (eyes as big as dinner plates) SHUT THE FRONT DOOR!

Hank: We figured after having a sick day all day from your medicine you could use something special.

Pai: (from behind the open pages of his new cookbook) Hank figured. This was his idea and he made your nachos.

Me: These looks amazing, Hank, thank you. Shall we share them?

Pai: I’m good. You two go. I am going to make dinner. We have all the ingredients to make dish 56: Masa Gratinada com Espinafres e Ricotta (Baked Stuffed Shells with Spanich and Ricotta).

Me: Yum!

Pai: Go on, now! Get out of my kitchen!

Hank: (carrying our nacho’s out of the kitchen on a tray) Thanks, papa! Let me know if you need help.

Pai: Will do.

Me: (beaming)