Article

Two Doenças (Diseases) and a Little Bit of Sheakespeare (A Conversation with Molly)

conversations with hank and molly

Me: Good morning, MaGoo.

Molly: Groan.

Me: It’s morning time.

Molly: No it’s not! It’s not morning. It nighttime. It nighttime, mommy!

Me: (walking to the window and raising the shades) I love how Shakespearean you’re being, but I assure you…

Molly: (shrieks, scuttling from the sunshine)

Me: (tapping the deep recesses of my memory for my favorite line) “No nightingale. Look, love, what envious streaks do lace the severing clouds in yonder east.”

Molly: (tossing off the blanket) What?

Me: Someday may you read and love the classics, my dear, just like your mama.

Molly: Colinho (hold me).

Me: I will do my best. (picking her up out of bed with difficulty since my rotary cuffs are shot)

Molly: Oh, I need my kitty!

Me: Of course, we can’t leave without your kitty. (bending slightly to fetch her lovie cat searing pain shoots up my spine and into the base of my skull and out my eye sockets)

Molly: Ah! Soft Cão (dog)! I need my Soft Cão (dog), too!

Me: How silly of us to forget, Soft Cão! (bending slightly to fetch her lovie dog searing pain shoots up my spine and into the base of my skull and out my eye sockets, turn to leave the room)

Molly: (straining for the top of her dresser piled with random bits and bobs) I need my *unintelligible word*.

Me: (stop, losing strength in my arms) Your what?

Molly: My *unintelligible word*!

Me: (further losing strength in my arms) I don’t understand, what do you want? Point.

Molly: (grand gestures) *unintelligible word*!

Me: (suddenly lose all strength in my arms, put Molly on the floor before I drop her, searing pain shoots up my spine and into the base of my skull and out my eye sockets as I bend to put her down)

Molly: (frustrated, three years old, doesn’t understand) Mãe, colinho! COLINHO! (Mom, hold me! Hold me!)

Me: (sit in the middle of the floor, wincing as my knees and hips pop and my spine pinches and burns and open my arms) Of course I will hold you! Come here.

Molly: (climbs into my lap, cute little lap is the literal translation of colinho, by the way)

Me: I am afraid I can’t carry you anymore today, MaGoo.

Molly: Why?

Me: Because mommy’s arms don’t work.

Molly: Don’t work? Why?

Me:

Me: (holding up two fingers) Because I have two doenças (diseases).

Molly: (attempting to hold up two fingers, but they get tangled in the mess of her other fingers) Two?

Me: Yes, but papa can carry you and mano (brother) can carry you and all our friends and family can carry you! But, you and I, we have something very special.

Molly: What’s that?

Me: Because you are so very strong and brave and independent we can hold hands and you can walk all by yourself and we can sit, where ever we may be, and you can always, and I mean always, climb up and have colinho (be held) with me. No matter where we are and no matter what we are doing I will sit still with you and hold you in my lap.

Molly: That is awe-some, mommy.

Me: Is it?

Molly: Yah! That is awe-some.

Me: I think so too.

Molly: (sighs and melts into me)

Me: (I melt back)

 

 

 

Article

Pick You Battles

batman-comic-panel

 

Hank: (walking in the house from school, coat and backpack still on) Oh my gawd, mom, you will never believe what happened at school today.

Me: Spill.

Hank: So I was in the library and this 6th grader who had missed school was in there to take an exam and he cheated on the whole time! Like through the whole test!

Me: Cheated how?

Hank: I saw him. He was googling the answers.

Me: Huh.

Hank: Normally there is always someone with you when you take a test, but for some reason, I don’t know why he was given the test and left alone so he just used his phone. I mean, I told the librarian, but she said his teacher knew what was going on and not to worry about it, but my friends and I were, like, so upset because that wasn’t right. He should have studied.

Me: Agreed, but Hank, you don’t know the situation. You informed someone of your concerns and that is all you can do.

Hank: I was thinking of speaking to someone else tomorrow. I mean, it isn’t right!

Me: Was the boy physical harming himself or others?

Hank: No.

Me: Was he destroying property?

Hank: No.

Me: Was he creating an unsafe or disruptive environment?

Hank: No.

Me: Was he intentionally spreading a highly contagious communicable disease that could decimate the population?

Hank: Mom!

Me: Hank, you did your policing; you informed an adult and that is all you should do. I know you are a rule follower, but not everyone is like you. In life you will meet people who haven’t earned their place in the world and that isn’t fair, but trust me, that boy will suffer later if he doesn’t know the information on that exam. His laziness will cost him in the future, so there is no need to be a vigilante.

Hank: I just think it is unfair.

Me: Life isn’t fair.

Hank: But (pause)…

Me: Is that boy your friend?

Hank: No, he’s a sixth grader.

Me: All the more reason to not take this further. It isn’t your business, you informed an adult of what you saw and now his cheating is between him and his teacher.

Hank: (frustrated sigh) But why didn’t he just study?

Me: What if he did, but in being left alone he was far too tempted by his access to the internet to prove he knew the material?

Hank: I would never do that. I would never cheat.

Me: And I respect your decision, but no one is asking you to police your school and prosecute wrongdoing. Are you Batman?

Hank: Mom, no.

Me: You did the right thing speaking with the librarian, but you also need to trust the adult you informed to handle the situation further. Only in cases of marginalization, neglect, abuse, violence, impending doom and or natural disaster do you push forward.

Hank: But it’s wrong.

Me: I agree.

Hank:

Me: Okay, I will tell you a story. A couple of years ago I had to get a blood draw and that blood draw had to be sent to Porto for analysis. It was arranged that I would just pop into the pathology lab at the hospital at the earliest appointment possible and dash in, have my blood drawn and dash out. It was all arranged. So I show up and I am the first one in line, but I didn’t have the same paperwork as the other people waiting in line so they assumed I was cheating and jumping in front of them, but I wasn’t Portugal people with certain illness, diseases and ages get to the front of the line.

Hank: Like babies.

Me: Exactly, but I didn’t look like I fit the criteria to jump the queue so a group of people, men and women, started demanding they see my appointment card and when the techs and I explained the situation and that I had priority because of my RA/AS they didn’t accept our answer and got rowdy and loud and accused me of cheating, saying I was lying and was probably a doctor’s daughter and being given special treatment.

Hank: That is so rude.

Me: Exactly! Then someone went and got a security guard and he got involved and questioned the techs and I again why I was jumping to the front of the line.

Hank: But you weren’t jumping.

Me: Yes, but the people assembled weren’t listening and decided to police the situation to get justice for being the second, third, fourth and fifth people in line instead of simply being one spot higher up the chain. It got so bad that the men that had their blood draws just after mine even walked behind me and insulted my limp and accused me of faking it for sympathy literally all the way home. They followed me to the door of our building loudly heckling me and accusing me of being a liar.

Hank: I think I remember this. You were so upset.

Me: I was and here’s the thing: I wasn’t upset when they raised their concerns in line, but I was mortified when they took their policing of me to the security guard and then to the streets. Even if I was cheating, which I wasn’t, was it all necessary? They had made their poor opinion of me and the situation known, they spoke with staff from the hospital and then with security, but in the end took it too far.

Hank: YES!

Me: Do you understand what I mean now about being a vigilante? There are a precious few moments in life when it is necessary to interfere, but there are far more small moments where it isn’t and your interference will be more harm than good.

Hank: Okay. I understand what you mean now. I don’t have to like the cheating, but I did what I could and I don’t want to take it too far.

Me: Exactly. Pick your battles, Hank.

Hank: I should save my battles for when I am needed.

Me: (nodding)

Hank: Okay, I understand now, thanks mom.

Me: Thank you.

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.