(I talk a large dose of medication for my Rheumatoid Arthritis and Ankylosing Spondylitis on Wednesday evenings before I go to bed. In order to always remember I have set an alarm on my phone. Last week Molly “helped me” turn off that alarm.)
Phone: (medication alarm ringing)
Me: (in the kitchen)
Molly: I fisk it, mommy! I fisk it! MOMMMMMMY, I fisk it, okay?!
Me (returning to the living room to witness Molly furiously tapping my phone like Desi Arnaz tapped the bongos, silencing my alarm while also managing to activate Siri)
Molly: (noticing me, proud) I fisk it, mommy!!!
Siri: Alright, I will check for a contact. What is your mommy’s name?
Molly: (to Siri without hesitation) POOP-AH-TINO!
Siri: I’m sorry, I have no contact for: Poop-ah-tino. Would you like me to try again?
Molly: (absolutely hysterical, this is the funniest thing that has ever happened to her) POOOOOP-AH-TINO, Mommmy!
Siri: I have no contact for: Poop-ah-tino Mommy.
Me: (giggling, turning off Siri)
Molly: I fisk it.
Me: You did, chicken. You fixed it all by yourself.
Molly: Yah… POOP-AH-TINO!!!
Me: (riots of laughter, scooping her up in my arms) SO who is this poop-ah-tino? Am I poop-ah-tino?
Molly: No, I Poop-ah-tino!
Me: You’re Poop-ah-tino?
Molly: (wiggling free, toddling off with the swagger a mini superhero) Poop! AH! TINO!
Flashback reenactment of Molly turning off my phone alarm as played by Desi Arnez
(Backstory: I have been trying to come up with a way to participate and raise awareness for World Arthritis Day 2017 and then a few days ago this Conversation with Hank happened and I had my answer. In Portugal there are a large number of apartment buildings whose ground floor are commercial plazas. Picture an indoor strip-mall consisting of local businesses such as: clothing boutiques, cafés, photocopy stores, electronics, a small groceries and hair and nail spas. This conversation partly takes place in a commercial plaza that was built before Portugal adopted laws mandating buildings to be handicap accessible.)
Hank: (holding the door open for Molly and I as I push her in an overburdened umbrella stroller with multiple bags draped over the handle + a toddler leaving her Nanny’s apartment)
Me: Thank you, kind sir.
Hank: So where should we go to have our lanche (late afternoon snack)? You’ve never picked me up from my new school before now that I walk myself and we haven’t found our lanche (snack) spot yet.
Me: Well, we have to be strategic. (pausing as we come to our first ramp which is very steep and not a wheelchair accessible incline, therefore knowing I will struggle to safely glide Molly’s stroller and myself down with my hip mobility issues due to Ankylosing Spondylitis)
Hank: I will stand at the bottom to catch the stroller.
Me: (frustrated giggle) Thank is kind of you, buddy, but who will catch me? (pitching us down the ramp precariously) Jeesh. I think these ramps are for deliveries and dollies. They are for sure not for people. Now I see why Molly’s nanny goes out of this building through the garage when they go for walks.
Hank: Okay, so back to the café question.
Me: The mitigating factor is I would rather walk out of our way home than up one of the intimidating hills of this neighborhood to our neighborhood with this stroller, so we will have to pick a café along the long loop home… (pausing at the top of another non handicap accessible ramp, this one ending in the non-opening side of an automatic sliding glass door) You have got to be kidding me!
Hank: Okay, look here, mama (taking the steps down leaving Molly and I at the top). Before ramming Molly into the glass you can pivot and bring the stroller down here like a step. Okay?
Me: (executing Hank’s plan of attack) I should have consulted Adriana (Molly’s Nanny) about the best way to leave this building before our goodbye kisses! Argh.
Hank: (leaving the commercial center and gliding down another flight of five stairs to the sidewalk) Okay, so to finish, are you saying we are going to pass by…
Me: (stranded at the top of the flight of five stairs, searching for an exit ramp and finding none exists)
Hank: (from the bottom of the stairs, noticing) I’ll come back up and help.
Me: Thank you, Hank. (together we manage to half lift, mostly bounce Molly, her stroller, her day bag, Hank’s gym bag, my tote bag and me down the short flight of five stairs)
Molly: Whoa! Whoa. Alllllllll Done.
Hank: Whoosh! That was so much work!
Me: Just to leave a building. Look around, Hank; there is no handicapped accessible entry that I can see in or out of this building. I guess I can’t buy the apartment for sale here like I was considering.
Hank: I never thought of that before.
Me: (starting our walk home) I think about these things all the time. I always have to make decisions about how much strain I put on my knees, my hips and my feet because of my Severe Rheumatoid Arthritis and Ankylosing Spondylitis. I make choices all day long based on what an activity will cost me in three areas: energy, mobility and pain. Some days just five stairs are enough to make my knees inflame and burn for 24 hours and there is no relief.
Hank: But we have five steps to get into our house.
Me: Five steps to get from the street into our building or the garage to our elevator, so either way there is no handicapped accessibility because there is no ramp and then there are five steps from the landing into our house, therefore if I want to leave the house I have to decide if I am able to spend what it costs in mobility, energy and pain to climb and descend 20 steps just to leave and return.
Hank: But you said five steps make your knees burn.
Me: That is correct.
Hank: So like, no matter what, if you leave the house your knees will hurt for the rest of the day.
Me: And the next. Thank you for listening and understanding.
Hank: But going down is easier than going up.
Me: So you would assume, but no. It all has a cost. Everything I choose to do in my life at this time has a price, even lying down! Even following my doctor’s orders of limited mobility has ramifications. I eat a healthy diet, but because of my recommended activity restrictions at the moment I live with weight gain. It’s not much, but enough that I notice and my vanity and joints don’t like it.
Hank: But you can swim, right?
Me: According to my primary doctor yes, according to a specialist second opinion no and to go to the pool to swim requires:
10 steps down to leave the building
Walking five blocks with a hill or holding my elbows above my waist, which is very painful, to hold the steering wheel and drive the five blocks to the pool
Getting dressed in a swimming suit
The activity at the pool
The shower after where I have to raise my elbows above my waist, which is very painful, to wash my hair and the bending to wash the chlorine from my body
Walking five blocks home with a dramatic decline or raising my elbows above my waist, which is very painful, to drive home
Ten steps up to the apartment.
Every activity in my day costs me three things. Do you remember what they are?
Hank: Um, energy, um… moving… mobility and pain.
Me: With my two forms of inflammatory arthritis as of now if I completed that list to get to the pool which could be beneficial in shedding the 5 kilos (10 lbs) I have gained this year I would pay with two solid days of intense pain, I would be house bound and mostly in bed and unable to be with you and Molly and papa. For now, I choose quality time with my family over weight loss and try to be a little more forgiving of myself when I don’t like the way my clothes fit when getting dressed in the morning.
Hank: Mom, I have a question. I think about this a lot actually. Why are there no medicines to help with your pain?
Me: There are, but they are very strong and have side effects. Eventually, I will ask for pain management drugs, but I want to wait as long as possible. I have the life style, freedom with my work and a very supportive and understanding family where I know I can take this walk, pick you up from school and Molly from her nanny, enjoy this lovely fall evening, have a treat in a café, navigate that ridiculous centro comercial (commercial plaza) back there and tomorrow lay flat all day. I can rest and stay quiet until you and Molly get home and save my energy to spend time with you two and your papa. It isn’t easy making this choice. My world has become very small and consumed by calculating what I can and cannot do to manage and maintain the level of pain I live with and to not raise that level to where I can’t cope mentally.
Hank: That is a lot to think about.
Me: Thank you for acknowledging that, it is, yes, but it is my choice. Making the choice to live with these two degenerative diseases and at this time not take pain management drugs makes me feel powerful and in control. This will change and evolve as my diseases progress or stabilize, either way and as things change I will find other ways to feel powerful. I will also find other tools to help my quality of life and aid my mobility.
Hank: Like a wheelchair?
Me: Yes, or a walker when I can’t lean on Molly’s stroller anymore.
Hank: When I get my first apartment I will only ever live in a building that is accessible. It will be like on House Hunters International! I will go to the imobiliária (real estate office) and tell them how many bedrooms I want, what my budget is and that I have to have an apartment where my mama can visit me.
Me: And I will walk or wheel through the front door on that day and be so very proud of you while also feeling very loved and respected.
Hank: Right, so the café?
Me: We are close enough to our very favorite café in town that I think the extra cost to visit it is far worth the price.
My motto, this hangs on my studio wall, illustration by me.
Hank: (dramatically belly flops on my bed)
Me: (awakened from my mindfulness practice)
Me: What’s up, buttercup?
Hank: (solid whine) I can’t find my pen.
Me: We have 10000000 pens in this house.
Hank: Not that kind of pen my pen for my school computer work.
Me: Oh, your thumb-drive.
Hank: I don’t know why you call it that. No one calls it that.
Me: Alright Sassafras, when was the last time you remember having your pen for the computers at school?
Hank: In Visual Education class. I had to do a drawing and I took it out when I was selecting my colored pencils.
Me: And is it in your pencil case now?
Me: And is it in your backpack?
Hank: NO! Argh, I am so stupid!
Me: No way.
Hank: WHHAATT? I am! I am so stupid! I lose everything!
Me: STOP RIGHT NOW.
Hank: (taken aback)
Me: You do not get to walk into this room and be self-deprecating. I REFUSE to participate in that kind of behavior. You can be frustrated. You can be annoyed. You can even think it is funny that things slip in and out of your life and disappear like snow flakes on warm pavement, but you do not under any circumstances get to come into my room, into my calm and loving space and expect me to participate in your insulting and punishing behavior over a trivial mistake. YOU are not stupid.
Hank: BUT I…
Hank: But mom, listen.
Me: I REFUSE! You made a mistake and it is time to learn from it. What have you learned, Hank?
Hank: (button pushing) That I am stupid.
Me: No matter how hard you try to get into trouble by sassing me I refuse to punish you because I know that is what you want. This is unacceptable behavior. STOP. What did you learn from this totally normal, happens-to-everyone kind of mistake, Hank?
Hank: That I lose everything.
Me: Stop. Sit up. I can’t sit up right now, but you can so sit up and look at me.
Hank: (sits up and meets my gaze, shoulders slumped, spine in a c-curve)
Me: (lovingly) Hank, I can see now that my suggestion of keeping your school thumb-drive, I mean computer pen, in your pencil case was a mistake. It is easy for something so small to slip to the floor or hide in a shadow and for you to walk away from it. Look for it tomorrow at school and if it is indeed lost we will just get you a new computer pen.
Hank: But I neeeeeeeed it for tommorrrroooowww!
Me: And I can’t do anything about it now. You’ve waited until too late to pack your backpack when I specifically told you this afternoon that if you have no homework then your first job when you walk into this house is to swap out your school books and make sure you are prepared for the next day.
Hank: ARGH! (slaps himself on the forehead very hard)
Me: STOP! Don’t you dare. Don’t you dare abuse and insult my son, WHO I LOVE, who is learning something new. You have never had so many responsibilities given to you to execute in such a short time and you have to be polite to yourself when you’re learning something new. Your teachers understand that which is why tomorrow you will stop into the Visual Education classroom and ask your teacher if he has seen your computer pen.
Hank: But he hasn’t he would have said something.
Me: You don’t know that. You don’t know if he found it later and placed it on his desk. After you speak to your Visual Education teacher if he doesn’t have it you will ask the functionaries (school aids and employees) if they have it in the lost and found box.
Hank: I don’t have that much time in the morning.
Me: You do if you make the time. You walk to school. Get to school 9 minutes earlier. I acknowledge that you made a mistake and lost something you need so be proactive enough to try and find it and I guarantee that your teachers will respect you for trying to correct your mistake. If you don’t find it then I will take you to buy a new one tomorrow and together we’ll come up with a better solution to keep it secure in your possession.
Me: You still want to punish yourself don’t you?
Hank: I just am so full of… ARGH!
Me: You’ve had a destructive habit of self-punishment since you were a toddler and it will take strength and practice to forgive yourself when you make a mistake and move on without self-abuse.
Me: How do you feel? Tell me about the storm inside.
Hank: My chest is like pressure and my breath is caught in my throat and I just want to scream, “I am so stupid,” over and over and over. My head hurts and my hands want to make fists and I want to cry forever.
Me: (deep, loud, exaggerated inhale and long exhale) A few years ago I would have wanted to take on all your feelings and absorb then like a sponge so you wouldn’t feel them alone.
Hank: (looking up)
Me: Does that make sense, because I mean that sincerely. When someone that I loved was hurting I used to collect all of their big, terrible feelings and soak them all up and also feel them so that they wouldn’t hurt alone. No one knew I did that, how could they, but it made me feel like I was helping. I don’t know when I started that habit. Maybe when I was Molly’s age, but it took a lot of work to stop consuming other people’s pain and instead sit with them, listen to them and empathize without feeling their pain, too.
Hank: (rather quietly) I don’t know how that feels but I know what you mean if that makes sense.
Me: We can’t help someone if we take on their struggle. We can’t. It is impossible, because then we are struggling too. If you can’t break the habit of punishing yourself when something goes wrong you will never be able to grow and cope and function in this world. We all make mistakes and the key is to learn from them. You can be frustrated and you should be frustrated. If you had walked into this room frustrated about losing your computer pen then we would be having a very different conversation right now, but I absolutely refuse, flat out, never and no way will I participate in your self-deprecation, in the way you abuse yourself, because it is wrong and it has to end. Losing you computer pen the night before you need it is frustrating, but there is absolutely no correlation between an annoying mistake and your intelligence. Your father is a doctor and loses everything, a million times a day, all day long and he is soooooooo smart, not smarter than me, but still very, very smart. You’re argument about losing things being a direct result of stupidity does not hold water.
Hank: (giggling because he knows it is true)
Me: My amazing, loving, important GAWD DAMN DOCTOR OF COGNITIVE DEVELOPMENT partner in life could not find his belt the other day, which I found in 0.8 seconds, but will they take away is Ph.D. for it?
Hank: (smiling) No.
Me: No. You’ve gotta learn to stay calm. Tell that voice inside your head that starts abusing you, calling you stupid and questioning you, to shut up. SHUUUUTTTT UPPPPP!
Me: You punch that voice in the face then take a huge, deep breath, because it is just a computer pen. It isn’t dire and even if it was a dire mistake if you fall into that abusive pattern you won’t have the ability to learn, fix, grow and evolve past that moment and you’ll get stuck. If you do the math and contemplate spending your entire life time crashing landing on my bed, broken by every little, small, normal accidental folly then you will have no time to laugh, take walks, enjoy life, eat ice cream, swim, puddle jump without that abusive voice inside telling you how much you suck.
Hank: (deep, accepting breath)
Me: The change won’t happen overnight, but I know you can do this.
Hank: How? That voice is loud and that voice is me!
Me: (trumpeting his victory) Whoosh, baby, you just halfway won the battle already!
Hank: (furled brow of disbelief)
Me: You know that voice is you. YOU. IT’S YOU! And if the abuser is you then you are the one with all the power to stop it. Do not let that lying, manipulative, ASSHOLE, part of you get to win!
Me: What? The abusive you is an asshole! I don’t want to hang out with the abusive, lying, asshole part of your brain and neither should you. We all, every single person on this planet have an inner voice wants to undermine us and, Hank, if you can punch that part of you in the face, that scared asshole part of you that abuses you, you will be doing yourself a life long favor because the longer you let that part of you win the harder it will be to gain the control over it in the future and eventually you will have to or he will win every time, every single time and you deserve better than to be consumed by hateful lies.
Me: How do you feel now?
Hank: (sigh) Tired.
Me: Battles are exhausting.
Hank: I am going to go and be alone for a while and listen to some music.
Me: Okay, thank you for talking to me and for listening. It isn’t your fault you have an abusive voice inside you, every single person has one, but you’re right that the voice is you, therefore you have the power to not let you hurt you anymore.
Hank: Tomorrow, I will go and look for my pen and even if I don’t find it I will be okay. I will be okay.
Me: You will. I promise you will be okay.
Hank: Thanks, mama.
Me: Love you, buddy. When you find your computer pen or we buy a new one we will attach a string to it and tie it to something you take to school everyday, like your planner or your pencil case.
Hank: That is a good idea. (oozes off the bed, worn out)
Me: (stares up at the ceiling, equally exhausted, because being a parent is no joke)
Hank’s current favorite song is My Funny Valentine, by Chet Baker.
He listened to it on repeat for the rest of the night.