Me: (walking to the kitchen to get coffee, eyes not yet open)
Hank: Happy Birthday, mom!
Me: Thank you, buddy.
Hank: Good morning! I am so glad it’s your birthday.
Me: Me, too.
Hank: Are you being sarcastic.
Me: Not at all! I love my birthday; one more trip around the sun.
Hank: You’re 38!
Me: Indeed, isn’t it wonderful!
Hank: I love that you love your birthday so much. Some moms don’t like getting older.
Me: Yes, but I am not some moms. (inhaling my coffee) I am grateful to age. Unfortunately, I have many friends that will never have the opportunity to be 38. I am so very lucky to live this life every single day and my birthday is the day I get to love my life out loud and celebrate how awesome it is to be me!
Hank: I didn’t know you thought about birthdays that way.
Me: Every day I get to wake up and hang out with you, enjoy this beautiful place where we are fortunate to live, laugh with your sister and be adored by your papa. I have amazing friends and family, my life is rich with creative pursuits and food and and the internet is full of puppy videos and no matter how hard I try I will never be able to read all the books I want to read and see all the places I want to see or all the films or plays, but every year I get a chance to try.
Me: Everyone’s life is hard. Every person has their own struggles and we can’t compare our life to anyone else’s. You only get this one wild and magical life to be you. My life isn’t easy, but it’s worth it and I love it.
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.
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!
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.*
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.
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.
Annnnnnnnd our Molly slept through the whole argument. Molly loves her sleep.
(3 out of 4 settling around the dinning table, Molly napping like a stone)
Pai: Thank you for the lovely lunch.
Me: Who wants soup?
Hank: I do.
Pai: Me, too.
Me: (in command of the ladle)
Pai: Have we all calmed down?
Me: I think we’re all still fragile.
Hank: I am better.
Pai: Can we start at the beginning? What happened in the kitchen?
Me: Hank came in to tell me that you had said he wouldn’t be able to get a new Nintendo game until next month and then he said he didn’t say that.
Hank: I didn’t think I said that, but now I think I did say that, but what I meant to say was that my papa didn’t say that, but that I thought he said that.
Me: So you assumed.
Hank: I don’t know what that means.
Pai: An assumption is when you guess that you are correct about something without proof. I told you that I was working on something at the moment and we could talk about getting your new game later, meaning that I wasn’t going to stop what I was doing and instantly solve your problem, because my task took greater precedence.
Me: And you heard what your papa said and applied it to what we established about how you would not be able to have more than one new game a month and you assumed, which made an ass out of you and me.
Pai: (groaning at my pun)
Hank: (cluelessly confused)
Pai: You have to speak better English to understand your mother’s pun. It’s because of how you spell assume in English. IGNORE HER. Now is not the time to pun, Hanford.
Me: Right, sorry. So you came into the kitchen with your assumptions and started manipulating me to go and speak to your papa about what you thought he said, but he didn’t actually say, and then while I was cooking you dropped the lid to my wok on the ground…
Pai: That was the part of this fight I didn’t understand.
Hank: I was talking…
Me: Whining. You were not talking.
Hank: I was whining to mom about what I thought you said about my game and I was holding the lid to her pan and I accidentally dropped it on the ground and it made a loud noise and mom just started screaming at me.
Pai: And that is when I came in and you stormed off to your room and then you mom and I had an argument because we didn’t understand each other and couldn’t communicate because of your assumption and because your mother was over the edge upset.
Me: (deep breath) I am sorry I yelled about the wok lid.
Hank: (spoon raised to his lips, eyebrow raised, trying to process the sentiment)
Me: Before modern times when traders would bring silks and tea and other imports from the East to Europe they packed all the goods on camelback and took something called the silk road. Camels are able to go long distances carrying great weight, but everything in life has a limit so the phrase, “the straw that broke the camel’s back,” came from that imagery. Picture a camel, burdened with cargo, standing totally fine and you lay one more piece of straw on top of him and he crumbles to the ground. That seemingly, weightless, unimportant thing was just far too much to bare, not because of it’s weight but because of everything else already carried. That is what it is like for me all the time and I need to get better at communicating that I am on the threshold of collapsing under the weight of all this pain!
Pai: Your mother goes through so much that we can’t see or imagine, Hank.
Me: I am only gonna tell you this once because I don’t want you to be sad, but I need to be honest so you understand.
Hank: (pushing his soup around) That is what you said when you came home from the hospital the first time. You said I wasn’t to be sad because you would never get better, but that it was okay because you were not going to die.
Me: And isn’t that great! I am grateful for this wild, magic life that I have with you and your papa and your sister. I am so in love with everyday that my diseases are minor sacrifices, but I need to be honest with you. I spend all of my energy every single day pretending to be well and sometimes I fail and instead of saying, “I can’t” or “can you help me” or “I need to rest,” I fail and am mean or yell or lash out and it isn’t fair. I am sorry I yelled at you when you accidentally dropped the wok lid, but it was the straw that broke the camel’s back and I am the camel of this family and when it isn’t me the camel is papa and we wouldn’t have it any other way, but it isn’t easy. Just like your life isn’t easy sometimes, Hank. That is my part in this argument: I let my pain overwhelm me and I didn’t ask for help before it was too late.
Hank: And my part was I assumed and wasn’t patient and then I got too sad and then I got upset.
Pai: And my part was I was too busy to see any of this happening.