Client 2
"Andrómeda"
June 8th, 2022
"Andrómeda"
June 8th, 2022
Andrómeda is 56 years old, but you would never guess so based on appearance. Fourty-five, you’d say, maybe 50. That’s because Andrómeda loves to stay active – whether it be a team sport, dance, or walking around town, perhaps attending a concert – she’s on her feet. Through this, as well as through her past marketing role for the family business (wherein she drove her motorcycle around the whole city), Andrómeda’s come to know the neighborhoods of Madrid better than most tour guides could ever dream.
With bushy black hair accentuated by large, warm, brown eyes – Andrómeda pulls you in. She’s always dressed in style, with some combination of top, pants, and matching Converse that complete the look. She carries a black backpack, within which she stores her communicador (communication book), which has her name, address, and pages of personalized photos she can use to get her point across to others. Her phone, stored in the same satchel, has a placard that reads the same basic information (without the pages of photos) in case she needs it in a jiffy, or in the case of an emergency.
And even if you somehow don’t catch sight of her, you’ll know Andrómeda’s around when you hear down the hall her excited “¡Muy bien, muy bien!”
Andrómeda’s home is in a bustling neighborhood, La Latina. Situated just southeast of El Palacio Royal, there’s plentiful access to bars and terraces with tapas, as well as buses to take her elsewhere, should she choose to do so.
***
After wandering down a narrow street that curves towards an outlook over El Caso de Campo, I found the correct apartment number, and rang the bell for Andrómeda to let me in. I stepped through the entryway and up a few stairs to a second set of doors. Next to the main wide, worn marble staircase, there’s a rickety old elevator that gets residents up from the mailboxes to their apartments. I chose the stairs.
Now with a “permanent OT lens,” as my professors called it, I note the irony of the elevator’s placement. This rising metal box on strings (it doesn’t deserve much more of a title) is still 11 steps and two doorways back from street level. Back at Polibea, Andrómeda’s occupational therapist, Raquel, has shown me videos of her visits to Andrómeda’s home, and how they practiced carrying light-weight items up and down the stairs. It goes without saying that many people would not even have this option. And even if the placement was logical, this elevator was not an exception from the majority I’ve squeezed into in Madrid – hardly wide enough for two people to stand shoulder-to-shoulder. No wheelchair would have a chance.
When I first walked into Andrómeda’s apartment, I saw that she had been sitting on the sofa, playing a game on her tablet. Our small talk was brief, given that I wasn’t sure what to ask after “¿Qué tal?” to which, of course, I received a “Muy bien,” and a huge smile. We got right down to the tasks at hand – I brought up a few recommendations that Andrómeda, Raquel, and I had pulled together over the last few days. I asked her preferences, and we agreed that heading to the family business first was a good start.
We grabbed our masks, bags, and Andrómeda her cane, and headed out. She was sure to lock the door behind us, turn the lights on and off for me in the hallway, and secure the elevator door (not that a thin latch made me feel any better about the metal box on strings). We headed out.
***
At the end of the day, as we sat and waited for the cake to bake, Andrómeda offered una merienda, or snacks. She pulled two bags of potato chips out of the drawer. After opening and tasting them, she noted that they had both expired. When we tried two more bags, we discovered that those were also expired, and had been for multiple years.
Now, it would be one thing if an item or two in the cupboard had gone past their recommended date. It happened in my family too, that is, before my brothers hit their growth spurts. However, a single jar that has migrated to the back of the shelf and is then promptly forgotten about tells a different story than a drawer full of expired food.
At first, this seemed out of character for Andrómeda. Her home is dust-free and organized. She takes care of herself and is always clean. Everything in her home has its place. Andrómeda doesn’t seem like someone who would forget about a drawer full of food.
However, as I sat on it, the stale potato chips began to make sense. Andrómeda lives a life of routine. Based on my knowledge, that routine includes getting herself ready, daily commutes on the back of her brother’s motorcycle to (arriving 10.00h) and from (leaving 14.00h) Polibea. She’s usually home before lunch and eats on her own. She uses the bus to visit her mom. For errands, she can go on foot to the grocery store for small items, orders larger things by bulk online, and goes to the hair salon next door to her apartment. On the weekends, she frequently makes trips to see her son, daughter-in-law, and two granddaughters who live just outside Madrid. In the hours between these scheduled events, Andrómeda is alone.
I would imagine she does not have many occasions within which to pull snacks out of a concealed stash in the living room, never mind check their expiration dates. Perhaps what I saw was truly just four bags of expired potato chips, within which there was nothing else to discern. However, after getting to know Andrómeda, I believe it points to something more. Her determination to be independent, along with her severe communication challenges, means she is also very alone.
The lack of one sense (taste, smell, sight, hearing, touch) often results in heightened awareness of another. If less of your brain is dedicated to seeing things, more can be dedicated to hearing things.
In my time at Polibea, with the case study clients, with Lu, and in other experiences, I’ve noted a similar phenomenon in individuals with communication challenges. If someone struggles to verbalize what’s on their mind, they likely have a knack for another way to go about doing so.
For many, expressions (and for that reason we frequently practice them, such as at the teleférico, or in the taller de apraxias) and gestures are superb. For Andrómeda, the latter is particularly impressive given the hemiplegia that affects her right side. With a simple raise or furrow of her eyebrows, or the glint in her smile-creased eyes, one can begin to recognize what Andrómeda is trying to say. Even more, they still manage to do so when masks are obligatory. That being said, gestures still can’t get us everywhere. In discussing more detailed subject matter with Andrómeda and other case study clients, I turn to closed questioning.
For some individuals with aphasia, or other neurological challenges, comprehension is an immense challenge. Understanding must reach a certain level before any hope of logical expression. For Andrómeda, this is not the case. She comprehends, it’s expressing her thoughts where she needs more time, alternative methods, and patience from the other individual. The last is vital for effective communication with Andrómeda. As with many other individuals with aphasia, when asked a question, the first answer is impulsive. For Andrómeda, it’s always “sí, sí, sí.” Only by waiting a second, and confirming by asking the question again, does she have adequate time to truly process.
If we still weren’t on the page after a series of yes or no options that progress from general to specific, Andrómeda rarely got frustrated. She would lightly swat me on the shoulder with the back of her hand, scrunch up her face, shake her head, and say “no, no, no.” I would verify, “¿no nos importa mucho?” she would smile, and we would move on.
From my conversations with Raquel, I know this wasn’t always the case. Andrómeda has been at Polibea for 8 years, and in the beginning, she was often frustrated, and emotional. This is to be expected, when one has to work unbelievably hard to communicate what’s on their mind. Through her work at Polibea, Andrómeda has constructed a toolbox of skills to help her communicate, therefore lessening her times of frustration.
To organize our day, Andrómeda and I communicated via WhatsApp. As I saw in various logopedia sessions, Andrómeda can read short words. With this, though I’m not sure if she understands the entire sentence I write, she can gather the important information. She then responds with emojis. If that’s not working – Andrómeda’s got a good memory to ask Raquel to tell me what she was trying to say.
For short distances, such as walking around her neighborhood, or walking around Polibea, Andrómeda uses a cane. At home, this cane is left at the entryway, and she furniture-walks.
***
In the United States, many of our days are spent rushing from one point to the next, a competition with ourselves to see how quickly we can get from one place to another. What’s the fastest metro route? How much can I push the speed limit on my drive? How much work can I get done while on my commute? In Spain, this is not nearly as common of a question.
Yes, people have schedules. However, “1 o’clock sharp” is best translated as “a las 13.00h, tranquilamente.” As mentioned in other reflections, there’s a common phrase in Spanish – “quien abarca mucho, poco aprieta,” or the equivalent phrase in English, “don’t bite off more than you can chew.” In Spain, I think part of why people don’t run between one obligation to the next is because they simply don’t sign up for so many obligations.
For Andrómeda, time is even less of the essence than the average Spaniard. As she lives alone, she is on her own time. And though it would only take her brother 20 minutes to drive her to Polibea’s new location on the back of his motorcycle, she would much rather find a route she can do on her own, despite the fact that it will take her almost four times as long on the bus. This ties into her high value of independence – as we’ll later discuss, Andrómeda doesn’t want to limit or interfere with the lives of any of her loved ones.
For now, Andrómeda does rely on her brother to get her to Polibea. The current site is not easily accessible by public transport. And last week, her brother suffered an ischemic stroke. Andrómeda did not make it to Polibea all week. Fortunately, he had a quick recovery, and was able to drive her by car (not their typical motorcycle) the following Monday.
I had no idea where we were going. I did not even know what the family business was. All I knew was that Andrómeda knew where we were headed, and that she knew how to get us there. Raquel had told me Andrómeda knows Madrid like the back of her hand, and we were putting that to the test. Though she couldn’t tell me what her plan was, nor could I discern the buildings she was trying to point out on our way to the bus stop (we later pieced together that it was the Puerta de Toledo around the corner to the south, and El Palacio Royal behind a building to the north), she clearly knew what she was doing.
While we waited at the bus stop, without checking a map or schedule, Andrómeda knew the first bus wasn’t ours. The second was, and she knew how much she had to pay to ride. While I was ready to pay for myself, when the driver asked, “¿para uno o dos?” Andrómeda quickly pulled 2 more euro out of her purse, shaking her head when I tried to pay her back.
On the bus, Andrómeda tried to point out certain things to me. I would guess – “¿tiene que ver con La Plaza de España? ¿Tiene que ver con la ropa? ¿Las películas?” With so much to see in downtown Madrid and given that everything was a moving target while we were on the bus, I was unsuccessful more often than not. But, as mentioned, Andrómeda would lightly swat my shoulder, her way of saying “it’s not super important.”
After getting off at Chueca, we still had 750 meters to go on foot. Andrómeda knew all the turns and followed all safety guidelines as we walked. Going at Andrómeda’s pace was a nice change for me. I noticed things that I just don’t pick up when I’m sprinting (sometimes literally) through town.
Everyone at the store knew her, of course. A younger Andrómeda could be seen in many family photos hung high up on the wall. Before her stroke, Andrómeda ran the place. She was the third family generation to take on the role. And as a certified Habana cigar establishment, many famous people had been through for photo ops.
Andrómeda’s brother asked her about her upcoming plans, as I had mentioned what I knew in my attempt to pass the time while Andrómeda used the restroom. When Andrómeda tried to explain, both her brother and I were confused. I knew she was leaving for her son’s house that Friday, June 10th. However, she kept saying “cinco,” which led her brother to believe she had just come back and had left on the 5th. Andrómeda pulled out her communicador and pointed to the days of the week printed on one of the first pages. Each day was assigned a number, 1-7. Friday, Viernes, was 5, cinco.
After a quick visit, we stepped back outside. Andrómeda pulled out her phone and ordered a Cabify car to get us back – I assume given how long it took to arrive by bus, and our plans to still make a cake. However, we had a slight challenge. As we waited, Andrómeda was getting calls from an unknown number. She didn’t answer it, but they kept calling. I wondered if it might be the driver trying to contact her.
As we stood, I was looking around to try and find the cab. Around the corner, I saw him. He wasn’t able to park where we were. Sure enough, it had been him calling. During the commute, I checked for a way that Andrómeda could see the phone number of an expected driver. I couldn’t find anything. So, I recommended that Andrómeda answer unknown numbers when she’s waiting on Cabify.
I was chuckling to myself on our way back. Though the driver had a GPS, Andrómeda communicated where she wanted him to go through the tone of her voice, “asi, asi, asi, aaaaahhsi.” Andrómeda knows Madrid better than Siri!
Our trip to the market was quite the hunt. Supermercado Día manages to squeeze a lot of goods into a small amount of space (something that could potentially be a motto for Spain in general). The tightly packed shelves lining the small pathways make things difficult for a novel shopper like me, and even for a frequent shopper like Andrómeda, who’s looking for things she’s never purchased before.
Andrómeda went for the pre-made cookies and other baked goods first, which is a logical step based on our goal. After she realized this wasn’t quite what we needed, we continued in a circle around the market. I found the chocolate chips, and after giving Andrómeda time, pointed her in the right direction. After another circle, we realized why the peanut butter had been so hard to find. Rather than be labeled as “crema de cacahuete,” or “mantequilla de cacahuete,” peanut butter was labeled just as that – peanut butter.
As has happened when a few clients start speaking to me in English and I don’t catch it with my Spanish brain on, my visual scan did not pick up on the English words either. The visual helped. After we collected our items, Andrómeda again insisted on paying. She was also determined to carry the bag back home.
Earlier that day, “Lupin” and I had made a photo recipe for my day with Andrómeda. My only pre-requisite had been one key ingredient – peanut butter. Andrómeda had discovered this delicacy in a recent cooking class at Polibea, and Raquel told me it was an immediate hit. So, I told Lupin, “cualquier cosa sencilla que tiene crema de cacahuete.” After he did a quick Google Search, we landed on a peanut-butter chocolate-chip Bundt cake.
Andrómeda often uses pictures to guide her through her commute. Raquel showed me the photo map they had made together to get from Andrómeda’s apartment to her mom’s senior living home. Andrómeda can then take a single picture and generalize to where she’s at while on the bus. With this in mind, we made a photo map of baking the cake. Through a video linked to the cake’s recipe, we took screenshots. And with three heads together, we figured out how to crop and align them on Microsoft Word.
***
Before we left for the family business and supermarket, I had suggested we see which ingredients Andrómeda had in stock, and which we would need to pick up. Just as with our texts, Andrómeda could read individual words. So, she was able to read the ingredients, and knew where to find them in her kitchen. When she didn’t have chocolate chips, she provided an alternative – bars of chocolate. When we looked for the necessary tools, Andrómeda was also able to generalize beyond the exact instruments used in the photos and knew where to find them.
***
When we got back from the supermarket, Andrómeda wanted to put on some background music while we baked. I’m not sure if she’s ever tried to use Movistar+, but there were multiple steps involved in pulling up the interface on her television, searching for, and selecting a song. Almost every song required a subscription to the music streaming service, which she didn’t have. So, we ended up listening to MTV’s 2000’s hits, which in my mind, was more entertaining anyway.
Andrómeda took part in each step: we weighed the ingredients together, she mixed the batter until she got fatigued, and she cracked the egg with just her left hand. One challenge Andrómeda did have was staying on top of completed steps. Each time we’d return to the recipe, she’d forget what we had already done. I suggested comparing our current product with the photos to see where we were, as well as putting checkmarks next to the completed steps. She seemed to like the first strategy more, perhaps simply not to mess up the freshly printed recipe.
Though the cake smelled delicious, it was getting late, so I made my exit. The next day, when she walked into Polibea, Andrómeda had a huge smile (even bigger than usual) on her face. When I asked her how the cake turned out, of course, I got a fist-pumping thumbs up, with many “Muy bien! Muy bien”s. With each therapist at Polibea who asked Andrómeda about her time with me, they got the same enthusiastic response. I felt a great sense of pride.
Andrómeda loves her son. Following her stroke 11 years ago, he and his wife moved in with her to provide support. While gracious for their generosity, Andrómeda is sharp. She saw that her son felt responsible for the care of his mother, and yet that he and her daughter-in-law needed to live alone. When Andrómeda moved into her own place, it was because she did not want to be the one to stand between that.
Raquel told me that this continues to be her main motivator for an independent lifestyle. Andrómeda does not want to be anyone’s burden. She wants to show her son that he need not feel responsible, that she can live alone.
This independence and determination are also what drove Andrómeda to find Travel Xperiencia, a company that organizes group trips across the world. Andrómeda loves to travel but had difficulties doing so on her own after the stroke. She would go to the beach with her son, daughter-in-law, and granddaughters, but felt similarly to when they were living together – she didn’t want to be an inconvenience. Plus, she would much rather venture solo into the unknown than sit on a beach. So, Andrómeda went to Raquel, and asked for help. Together, they found Travel Xperiencia, which serves both people with disabilities and people without (In general, Andrómeda prefers to spend her pass-times this way, rather than in “adapted” activities).
Though not “independent” in its traditional sense, Andrómeda’s adventures are precisely the kind of independence we aim to facilitate as occupational therapists. Though her trips may be pre-organized and in groups, they are still done without relying on her son. The same sentiment applied when Andrómeda recently visited Valencia with a close friend – not alone, but still independent.
***
Andrómeda is also very close to her mother. Early on in my case-study day with Andrómeda, her mom called for a quick check-in. Andrómeda knew it would be her on the other end of the line, predicting so before getting to the living room, where her cell phone was propped on the back of the couch. The brief, comfortable encounter led me to believe the conversations are regular.
Andrómeda’s mother has recently moved to a residential facility. Andrómeda visited her frequently before but is now even more determined to see her mom as much as she can. With this in mind, she and Raquel made the photo map to her mom’s place so Andrómeda can visit as often as she’d like.
When I asked Raquel about her many years of working with Andrómeda, one of the first things she told me was, no matter how small the matter, “ella lo quiere resolver a su misma.” She wants to solve it by herself. From installing a jar opener into her kitchen shelving to traveling across the world, Andrómeda is finding a way to do so independently as possible.