(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 undressed
- 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
- Getting dressed
- 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.
Hank: You read my mind all the time!
Hank: Yes! And mama, how are you doing? Do you need me to push the stroller? Can I help?
Me: (leaning on the stroller for mobility support) Just asking was all the help I needed, thank you.
Molly: (exhausted from her day at play, blissed out in her stroller, eyes heavy)