Eng - MCD Capstone

Client 3

"Pomona"

July 1st, 2022

Introduction

When I first met Pomona, I was a bit overwhelmed. We were in a group session, Aseo Personal, and the individuals present were all paying attention to their own self-care routine, whether it be makeup, painting nails, face masks, or facial hair removal. Pomona joined the group last, and upon her entrance, the noise volume of the room quadrupled. She reached into her bag, and revealed both a sturdy, 3-headed razor, and a ripened, yellow-brown banana. Pomona swiftly ate the latter (while still maintaining a conversation across the room), and then promptly moved on to use the former. Though at first glance I was taken aback by her dominating presence, I grew to learn how her seemingly exaggerated personality is driven by love and compassion.

Pomona is a 38-year-old mom to “Poppy” and “Lily,” almost-four-year-old twin girls. The day after the twins’ first birthday, Pomona lost consciousness, and was taken to the hospital. They found that although her physicians had attributed her headaches and nausea to post-partum depression, the real source was a cerebral tumor. Since then, her world has completely changed.

Home

A professor in graduate school once told me that if you really want to know how another person lives, to look inside their refrigerator. If one applies this theory to Pomona’s story, one would note that, simply put, her life is messy (I’ll write more on this in the Gazpacho section below). One of the first things María, my mentor as well as Pomona’s occupational therapist at Polibea, told me when I began to work with Pomona had to do with this disorganization. As María put it, “los pocos recursos que hay no se gestiona adecuadamente.” Translated, “the few resources they have, they don’t adequately manage.” This theme popped up again and again throughout my time with Pomona.

***

Pomona’s home is cramped – not only due to the piles of things lining the walkways and every surface in the rooms, but also in the hallways where a woman as short as me can easily touch both walls with my arms outstretched. This apartment, while technically reachable by elevator from ground level – is far from accessible. Seated in her first wheelchair, Pomona was unable to navigate her home independently. After jumping many hurdles, she recently received a chair that fits the doorways of her home – greatly increasing her quality of life.

While Pomona has an expensive phone hanging on a lanyard around her neck, and multiple large tattoos painting her skin, when asked if she could afford a transfer bar to assist with getting in and out of bed (182.95€ on Amazon, purchasable through 15€ monthly installments), Pomona and her husband, “Rolando,” stated it was too expensive.

Similar evidence of María’s words were found as soon as I walked into their kitchen. Counterspace was filled to the brim with tools that hadn’t been used in recent history, as evidenced by the layer of dust on the surfaces. What I thought was perhaps an unfamiliar adaptive tool that had gone unused was in fact a wooden frame specifically made to display and freshly slice jamón ibérico, an expensive meat that is shaved directly off the leg of a pig. I believe this is a rookie mistake I would never have made in the United States.

***

Messiness and jamón ibérico aside, Pomona made sure to make me feel welcomed upon my arrival. We began with hugs and kisses, as is custom. We picked up on conversation we had left off at Polibea. Despite this kindness and familiarity, my first feelings in her apartment were anything but that of comfort. I struggle to imagine how their home operates when two young girls and a small dog are running around.

Communication

Different than the other case study clients, Pomona does not have aphasia. Rather, she struggles to communicate due to her dysarthria, a speech disorder caused by muscle weakness. Due to hemiparesis on her left side, Pomona’s vocal cords do not fully align, and she struggles with phonorespiratory coordination. In speech therapy sessions, I saw how her therapist, Magda, helped her hear herself properly pronunciate by shifting her head to allow gravity aid in closing her vocal cords. I learned how she practiced vowels by first starting with “m” (an easier sound to pronounce as one’s vocal cords are open) and shifting to more difficult, closed-cord sounds such as “a,” “i,” “o,” and “u.” To coordinate her breathing, Magda asked Pomona to produce progressively longer sentences preceded with a deep inhale. This muscular practice was different than anything I’d ever seen in my previous experiences with communication disorders, the majority of which had been cognitive.

At first, I really struggled to understand Pomona. In some ways, even more so than with the other clients I worked with – because while those with aphasia often had other forms with which to communicate (comunicadores, emojis, written words) – Pomona did not. Over time, within which I learned more of her story and became accustomed to her contexts and common topics, I began to understand. I am quite proud of this, as María later told me that many therapists at Polibea still do not understand Pomona.

Mobility

While brainstorming what I could do to help Pomona in our brief time together, María recommended we work on transfers in Pomona’s home. What happens in therapy is often not that which happens outside of therapy, and María was curious how things were going once Pomona left Polibea.

Previously, María had shown me edited videos she and Pomona had made on Movari Video Editor Plus. Within this system, they could add shapes, icons, and letters to video recordings of the transfers they practiced at Polibea. From what I saw, Pomona could safely and effectively do these transfers with practice and time.

As expected, the operation did not go down as planned back at Polibea. One of the first things we did upon my arrival was to look at how Pomona transfers from her one wheelchair to the other, with the assistance of Rolando. Later, we looked at Pomona’s transfers on and off the toilet, on and off the shower chair, and on and off the bed. While cumbersome, the transfer between wheelchairs was functional. Pomona and Rolando had their own way of doing things, and it worked. I later told María that I had made the decision not to step in with what I would change – their way was safe, and odds are what worked for me as a much smaller human than either of them would not apply to them.

However, I did step in with the bathroom and bedroom transfers. These were less effective, and in many senses more important than the wheelchair transfer. In order for an individual to be home alone safely, they must meet two requirements: 1) to be able to move around the home without the help of another person, and 2) to be able to go to the bathroom without the help of another person. With her new wheelchair, Pomona meets the first requirement. However, not yet the second. She currently needs Rolando to aid lifting and lowering her.

What with the tight quarters in their bathroom, this is not an easy task. Though both individuals described to me exactly what kind of support bars would help, though we simulated the transfers, and while I came to the same conclusions and gave the same advice as María, no action steps were taken.

***

It was not until we were halfway to the market that Pomona mentioned that this was her first time driving her new electric wheelchair in public. As her therapist in this situation, it was my responsibility to know this. I knew we were practicing, and that I must stay by her side – but I had not known just how much of a novice driver she was. I immediately adapted my approach, and never took my eye off her nor left her side. I was surprised to see that while Pomona is not consistently aware of her limitations, she was sure to remind herself that she must concentrate while driving her chair – “tengo que concentrarme” – and that she shouldn’t talk while doing so.

***

Of note, when Rolando had doctors’ appointments one morning and could not take Pomona to Polibea, she did not show up. The only way María and the other Polibea staff knew what happened was because I recalled Pomona’s disagreement with her husband on our way back from the flea market – when they were discussing who would help her get out of bed, dressed, and ready for the day on the day he had early appointments. A multitude of factors plays into this dependency – environmental, financial, relational – meaning there is no easy solution.

Activities

Vuestra Llegada

Vuestra Llegada, a story written by Pomona for her daughters, was not a project to be completed in a single day. Rather, it was a multi-step endeavor that spanned multiple occupational therapy sessions over multiple weeks. As I became accustomed to Polibea, and further developed my project, I jumped into the process about halfway. Pomona had dictated her story to María, who had then typed it up on Microsoft Word. Together, they reviewed it to make edits and correct errors. Pomona then collected pictures she wanted to add to the book, and María loaded them onto the occupational therapy department’s desktop at Polibea. I stepped in when it came time to transfer Pomona’s words and photos to an online book-making site, Hofmann.

Over the course of five sessions, Pomona brought her story to life by reading a copy María had printed while I typed her words onto the program’s template. Then, Pomona matched the photos to the desired pages, told me where to crop and enlarge or where to shrink as I maneuvered the mouse, and selected patterned backgrounds for each page, to which I made tasteful suggestions to make sure the black, Comic Sans print would still be legible when layered on top. When it was done, we checked together for errors. I was impressed to see the consistent effort Pomona put in, and was touched by the story of her daughters’ first few years of life.

***

We hit a bump in the road when trying to order the book to be sent to Polibea. Two days in a row, Pomona forgot to bring in her credit card to purchase and ship the book. When I arrived at Pomona’s for our day together, I delivered the book. She quickly dropped everything to read the pages again, this time with her work in her own hands. Luckily, we finished with plenty of time to spare before the twins’ birthday, as this would be their gift.

As previously mentioned, many therapists struggle to understand Pomona due to her dysarthria. Many of her friends and acquaintances at Polibea are challenged to understand her as well. One of the most powerful moments for me throughout capstone came in helping Pomona communicate.

After our day together, Pomona brought Vuestra Llegada to Polibea to read to her friends. We sat at the front of the room, Pomona in her chair and me perched on the computer table behind her. As Pomona held the book, turned the pages to show the pictures, and read one phrase at a time, I repeated her words again for the audience. María told me this was a poignant moment for her as well – that I had come to understand Pomona, in Spanish, and was able to then repeat her words clearly to other clients.

Mercadillo

On our way to the flea market, I asked Pomona about her daughters, who I had not seen around. Pomona explained that during the summer, the girls go to their grandmother’s for a few weeks at a time. The dog goes with them.

Upon arriving, I witnessed firsthand what María had told me about – a poor management of money that seems to add to the daily challenges in Pomona’s life. Pomona and Rolando first stopped at a shoe stand, and purchased two pairs of high-heeled espadrilles – off of a mountain of partner-less shoes which incited a 20-minute search – that did not fit her feet.

Soon after, Pomona’s husband moved apart from us as we stopped at different stands. Pomona was looking for a certain type of clothespin, and we searched every homeware table we saw. I was impressed by each vendor’s patience with Pomona – I encouraged her to ask herself each time, and then I would help clarify if the person did not understand. In the end we were unsuccessful, but Pomona didn’t seem to mind.

Along the way, we also stopped at multiple stands with swimsuits, which she struggled to buy with her credit card since many only took cash. When she found a vendor that would accept her card, she was midway through the purchase when her husband came. He at first appeared overwhelmed with the situation, but then went along with it. I had initially asked what she needed the swimsuit and shoes for, and then if she really needed them, but I quickly realized I wasn’t getting anywhere.

Our last stop was a produce stand, where they purchased tomatoes, cucumbers, peppers, and bags filled with other ingredients for the gazpacho Pomona wanted to make.

***

Throughout our time at the market, I was uncomfortable. While I attempted to guide Pomona through basic traffic guidelines (look farther ahead than the person right in front of her, break before she thinks she needs to break, particularly given her decreased vision, etc.), Rolando repeatedly advised the opposite – “Es tu derecho, las otras personas deben moverse, si los atropellan es su culpa.” Translated, “it’s your right of way, the people around you need to get out of the way, if they get run over it’s their fault.”

To a certain extent, he was right – Pomona has the right of way. However, I also felt that it is basic human decency when in a crowded market to at least try and not run over peoples’ feet, when there’s no way they could possibly always see you coming. I felt like in saying so, Pomona’s husband thought I was disrespecting her. Luckily, Pomona didn’t seem bothered and thanked me for the advice.

As we walked back to their apartment, Pomona and her husband got into the aforementioned dispute – or perhaps it was simply banter, what showed to be their most common method of communication I witnessed in my time with them – about who would get Pomona up and ready for the day at Polibea. What ever they later attempted, surmised by Pomona’s absence that same day, it didn’t work.

Gazpacho

Pomona likes to make gazpacho because it is a meal she can make with her Thermomix kitchen aid. This tool gives you step-by-step instructions, weighs ingredients, and blends them together. While I helped with the cutting, Pomona correctly followed all of the steps. Due to safety concerns with the knife and her decreased tactile sensation and coordination, I do not believe Pomona could do this alone. However, she can participate to a far greater extent than she would with a more complex dish.

***

As Rolando cleared off a workable space for us in the kitchen (my offer to help was declined), I used the time to take note of the space. Under the pretense of asking for water, I opened the fridge – to which I saw a plastic bottle filled with gazpacho already made, as well as a drawer full of the same fruits and vegetables we had just bought, but these much older and wilting. We had enough tomatoes and peppers to make gazpacho for weeks. Unfortunately, I knew these ingredients would not last that long.

Later, after we filled the mixer to the brim with ingredients, we still had old vegetables leftover – and the ones just purchased were kept in their plastic bag in the opposite corner of the kitchen. We had more tomatoes than I knew what to do with, no freezer space to store it, nor the energy to make that much gazpacho after our trip to the market anyway. On top of it all, we had the leftover gazpacho sitting at the front of the fridge.

***

While Pomona and I made the gazpacho, Rolando slept. I would imagine such an opportunity is few and far between. Though Pomona and her husband warmly welcomed me into their lives, after just a few hours spent in their world, I was absolutely exhausted.

Independence

During my time with her, Pomona’s three-year plaza pública ended. She would have to pay independently or stop coming to Polibea until another spot opened up. As you can now probably surmise, Pomona was leaving.

On her last day, Pomona was quite distraught. She had made a family there and did not want to leave. However, it did not appear that her continued progress, now in jeopardy, was at the top of her mind. While María tried to remind her of exercises that she could turn into games with her daughters (e.g., Poppy and Lily move colorful balls and pens while Pomona tracks the moving object), Pomona was focused on completely different matters.

She wanted to go in for optical surgery (purely aesthetic in purpose) as soon as possible, and wanted her mother-in-law to leave. When María explained that the former was not functionally necessary and could wait, Pomona quickly moved on to the second. When María asked who would clean Pomona’s house, who would cook, who would take the girls to school, and other family maintenance tasks, Pomona had no response. She circled back to her same concerns and unfounded arguments. Pomona was perseverating on her definition of “independence,” and could not begin to see that reality will likely be quite different. In many senses, Pomona is not aware of her deficits.

In addition to her plaza pública ending after three transformational years at Polibea, Pomona had further reason to be overwrought on her last day. The day prior, she had received incredible news – the last remains of her cerebral tumor were gone. Amidst all the goodbyes, Pomona was excitedly sharing a video recording from the night prior. The two-minute clip brought tears to multiple pairs of eyes, as it showed a dear friend of hers singing a self-composed tune to Pomona, detailing just how proud he was of her and her journey while they celebrated at a dinner in town.

***

This is all to say, much in Pomona’s life is in transition. Despite this, what motivates Pomona to move forward has remained largely the same – Poppy and Lily.

Pomona was unable to participate in almost all her daughters’ first years of upbringing. Her therapy has been focused on doing as much as she can as a mother. As her story to them writes: “Para mama, ‘sus niñas’ sois muy importantes; tan importantes que luchó, lucha, y luchará hasta que consiga cuidaros sin necesidad de ayuda, porque para ella, la magia, la hacéis vosotras.” Translated:

“For mom, ‘her girls’ are very important; so important that she fought, fights, and will fight until she manages to take care of you without needing help, because for her, the magic, is done by you both.”

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