Learning Objective 3
Learning Objective 3
Embedded Files
Deepen knowledge of the lived experience of individuals with aphasia
Interview with "Lu" Vives
Interview with "Lu" Vives
05.25.22
05.25.22
As I stand on the corner of Espíritu Santo and Madera, Barry Manilow’s “Copacabana” is spilling out into the narrow cobbled streets. Growing up in a family of Fan-ilows (from which I must admit I am a black sheep, when it comes to Barry’s unrelentingly cheesy tunes), I can’t help but chuckle when I hear the familiar conga.
As I stand on the corner of Espíritu Santo and Madera, Barry Manilow’s “Copacabana” is spilling out into the narrow cobbled streets. Growing up in a family of Fan-ilows (from which I must admit I am a black sheep, when it comes to Barry’s unrelentingly cheesy tunes), I can’t help but chuckle when I hear the familiar conga.
I’m waiting outside Lolina Vintage Café in Malasaña, a central neighborhood of Madrid known for its surplus of vintage clothing stores. Or at least I assume it must be, as a quick visual scan of the window displays returns with more patterned button-down shirts than I’ve ever seen outside of films from the ‘80s...or perhaps at none other than one Barry Manilow concert I was dragged to, where die-hard Fani-lows dressed up in gear from the years of Barry’s height of fame.
I’m waiting outside Lolina Vintage Café in Malasaña, a central neighborhood of Madrid known for its surplus of vintage clothing stores. Or at least I assume it must be, as a quick visual scan of the window displays returns with more patterned button-down shirts than I’ve ever seen outside of films from the ‘80s...or perhaps at none other than one Barry Manilow concert I was dragged to, where die-hard Fani-lows dressed up in gear from the years of Barry’s height of fame.
I’m here to meet with María Luisa “Lu” Vives. Recognizing her face from her YouTube channel, I spot Lu coming up the street. She gives besos to the owner of the fruit stand next door. As we sit down at Lolina, the waitress knows her by name, and knows her order. Malasaña is Lu’s barrio, and she is evidently a welcomed local.
I’m here to meet with María Luisa “Lu” Vives. Recognizing her face from her YouTube channel, I spot Lu coming up the street. She gives besos to the owner of the fruit stand next door. As we sit down at Lolina, the waitress knows her by name, and knows her order. Malasaña is Lu’s barrio, and she is evidently a welcomed local.
Lu Vives is a woman of many talents, but I’ll try and fail to do her justice by naming a few. Lu paints, acts, and sings. Lu is a former expert consultant in innovation, with which she aided businesses in finding creative alternatives to improve their practice. Lu understands six (and she would perhaps tell you seven) languages. Lu is mom to two young girls, and spouse to Carlos.
Lu Vives is a woman of many talents, but I’ll try and fail to do her justice by naming a few. Lu paints, acts, and sings. Lu is a former expert consultant in innovation, with which she aided businesses in finding creative alternatives to improve their practice. Lu understands six (and she would perhaps tell you seven) languages. Lu is mom to two young girls, and spouse to Carlos.
On May 22, 2018, four years and 3 days to the morning we met for un café, pan y tomate, Lu had a stroke. As a result, she lost her ability to coherently express herself through spoken word. Nor could she write or read. Lu soon learned that she has aphasia. This is how her “seventh language” came to be – in addition to Catalan, Castellano, French, English, Portuguese, and Italian – Lu also speaks aphasador, a term she coined for the challenge it is to speak with others given our fast-paced world. As she puts it in another interview, “En un mundo tan veloz si no puedes hablar no existes.” Translated, “In such a fast-paced world, if you can’t talk, you don’t exist” (Echazarreta, 2022).
On May 22, 2018, four years and 3 days to the morning we met for un café, pan y tomate, Lu had a stroke. As a result, she lost her ability to coherently express herself through spoken word. Nor could she write or read. Lu soon learned that she has aphasia. This is how her “seventh language” came to be – in addition to Catalan, Castellano, French, English, Portuguese, and Italian – Lu also speaks aphasador, a term she coined for the challenge it is to speak with others given our fast-paced world. As she puts it in another interview, “En un mundo tan veloz si no puedes hablar no existes.” Translated, “In such a fast-paced world, if you can’t talk, you don’t exist” (Echazarreta, 2022).
Now, Lu can speak Castellano (the Spanish language in most regions of Spain, outside of Cataluña), and is beginning to recall her Catalan when she’s back in her hometown, Barcelona. Formerly fluent in six tongues, these are the two languages with which Lu is still able to speak. Impressively, Lu is still able to understand her other four languages. Occasionally, a word or two from her other languages (papallona rather than mariposa, or butterfly, mitjó rather than calcetines, or socks, and oli rather than aceite, or oil) are easier for her to say – so she takes the path of least resistance.
Now, Lu can speak Castellano (the Spanish language in most regions of Spain, outside of Cataluña), and is beginning to recall her Catalan when she’s back in her hometown, Barcelona. Formerly fluent in six tongues, these are the two languages with which Lu is still able to speak. Impressively, Lu is still able to understand her other four languages. Occasionally, a word or two from her other languages (papallona rather than mariposa, or butterfly, mitjó rather than calcetines, or socks, and oli rather than aceite, or oil) are easier for her to say – so she takes the path of least resistance.
Today, Lu spoke with me for just short of two hours. Despite our unique duo – Lu, a native speaker of Catalan and Castellano with aphasia, and me, an English-speaking graduate student who began her Spanish studies 13 years ago – I’d like to think we communicated quite well. Just as Lu was patient with me when I searched for the right noun or verb conjugation, I was patient with her as she fought a much harder battle in her own head.
Today, Lu spoke with me for just short of two hours. Despite our unique duo – Lu, a native speaker of Catalan and Castellano with aphasia, and me, an English-speaking graduate student who began her Spanish studies 13 years ago – I’d like to think we communicated quite well. Just as Lu was patient with me when I searched for the right noun or verb conjugation, I was patient with her as she fought a much harder battle in her own head.
A battle. That’s how she described the constant hunt for the right word, amidst the jumble of six languages in her brain. If you speak Castellano, I highly recommend you watch Lu describe this process herself – here, here, and here. As is emphasized in her videos, and as Lu told me herself – speaking takes immense time and energy. At the end of the day, she can be greatly fatigued.
A battle. That’s how she described the constant hunt for the right word, amidst the jumble of six languages in her brain. If you speak Castellano, I highly recommend you watch Lu describe this process herself – here, here, and here. As is emphasized in her videos, and as Lu told me herself – speaking takes immense time and energy. At the end of the day, she can be greatly fatigued.
It is stories like Lu’s that first drew me to study neuroscience, and later occupational therapy. I remember sitting in psychology class one day, junior year of high school, where we learned about aphasia. It was the first I had ever heard of the word. We talked about how aphasia can express itself differently for people who speak more than one language. I was fascinated to learn that, depending on the stages of life in which an additional language is learned (simultaneously, or at different periods) – the localization of these languages in our brain changes. Therefore, depending on the localization of brain damage, some languages may be more impacted by the damage than others. Similarly, for those who speak sign language, damage to the same area of their brains can cause challenges in hand coordination in forming words and phrases.
It is stories like Lu’s that first drew me to study neuroscience, and later occupational therapy. I remember sitting in psychology class one day, junior year of high school, where we learned about aphasia. It was the first I had ever heard of the word. We talked about how aphasia can express itself differently for people who speak more than one language. I was fascinated to learn that, depending on the stages of life in which an additional language is learned (simultaneously, or at different periods) – the localization of these languages in our brain changes. Therefore, depending on the localization of brain damage, some languages may be more impacted by the damage than others. Similarly, for those who speak sign language, damage to the same area of their brains can cause challenges in hand coordination in forming words and phrases.
As we’re told in school, “when you’ve met one person who has had brain damage, that’s that – you’ve met one person with brain damage. No two brain injuries are alike.” Lu learned Catalan and Castellano as an infant. She learned French and English in primary school. In her 20s, she learned Portuguese through friends, and Italian for her work. Today, she can speak Castellano, and is working on bringing her Catalan to the same level. She tells me that returning to speak the other languages is years down the road, if at all.
As we’re told in school, “when you’ve met one person who has had brain damage, that’s that – you’ve met one person with brain damage. No two brain injuries are alike.” Lu learned Catalan and Castellano as an infant. She learned French and English in primary school. In her 20s, she learned Portuguese through friends, and Italian for her work. Today, she can speak Castellano, and is working on bringing her Catalan to the same level. She tells me that returning to speak the other languages is years down the road, if at all.
Lu’s current focus is Hola Que Tal, an initiative she named in reference to one of the few phrases she would often repeat shortly following her stroke. Her personal lexicon has grown exponentially since. Now, through Hola Que Tal’s YouTube, Facebook, Instagram, Twitter, and LinkedIn presence, Lu supports individuals with aphasia, advocates for accessibility to services, and disseminates awareness of aphasia to those who are unfamiliar with the term.
Lu’s current focus is Hola Que Tal, an initiative she named in reference to one of the few phrases she would often repeat shortly following her stroke. Her personal lexicon has grown exponentially since. Now, through Hola Que Tal’s YouTube, Facebook, Instagram, Twitter, and LinkedIn presence, Lu supports individuals with aphasia, advocates for accessibility to services, and disseminates awareness of aphasia to those who are unfamiliar with the term.
Her first objective, to support Spaniards with similar diagnoses – focuses on helping individuals find the resources available to them. The system does not make it easy – there is no distributed list of doctors, speech therapists, rehabilitation centers, classes, and extracurricular groups available. After one week at the hospital immediately following her stroke, Lu went home. She didn’t hear from any doctor for three months. Lu describes one tool she hopes to bring to fruition – a Google Map, of sorts – with all the opportunities available to individuals with aphasia and their support networks.
Her first objective, to support Spaniards with similar diagnoses – focuses on helping individuals find the resources available to them. The system does not make it easy – there is no distributed list of doctors, speech therapists, rehabilitation centers, classes, and extracurricular groups available. After one week at the hospital immediately following her stroke, Lu went home. She didn’t hear from any doctor for three months. Lu describes one tool she hopes to bring to fruition – a Google Map, of sorts – with all the opportunities available to individuals with aphasia and their support networks.
Lu takes these efforts one step further with her second objective, where she speaks with policy makers, professional groups, and the like to advocate for more wholistic and higher quality care. Lu hopes to convince hospitals to start collecting diagnostic data, of which there is currently none, on the approximately 350,000 (and more, given severe cases of COVID-19) Spaniards diagnosed with aphasia. Recently, she presented these numbers in her talk, “Vivir con afasia” [Life with aphasia], at a webinar entitled “Avances frente al ictus: desde la Estrategia del Sistema Nacional de Salud al Plan de Acción Europeo” [Progress in stroke treatment: From the National Health System’s strategy to the European Action Plan].
Lu takes these efforts one step further with her second objective, where she speaks with policy makers, professional groups, and the like to advocate for more wholistic and higher quality care. Lu hopes to convince hospitals to start collecting diagnostic data, of which there is currently none, on the approximately 350,000 (and more, given severe cases of COVID-19) Spaniards diagnosed with aphasia. Recently, she presented these numbers in her talk, “Vivir con afasia” [Life with aphasia], at a webinar entitled “Avances frente al ictus: desde la Estrategia del Sistema Nacional de Salud al Plan de Acción Europeo” [Progress in stroke treatment: From the National Health System’s strategy to the European Action Plan].
Lastly, Lu works on dissemination. She wants people to know that “En la cabeza, todos somos normales.” Translated, “In our heads, we [people with aphasia] are normal.” When it comes to her personal experiences, she wants people to know that “Soy mama normal,” or, “I’m a normal mom.” Lu shared that this part of her life, learning to tell different types of stories to her daughters at night, or being unable to help them with their French homework despite her prior fluency, has been the most difficult for her to grapple with.
Lastly, Lu works on dissemination. She wants people to know that “En la cabeza, todos somos normales.” Translated, “In our heads, we [people with aphasia] are normal.” When it comes to her personal experiences, she wants people to know that “Soy mama normal,” or, “I’m a normal mom.” Lu shared that this part of her life, learning to tell different types of stories to her daughters at night, or being unable to help them with their French homework despite her prior fluency, has been the most difficult for her to grapple with.
Lu mentioned that a great challenge with Hola Que Tal is the writing component. While Carlos, her sister, her cousin, a friend, her neuropsychologist, and speech therapist all volunteer their time to help Lu put down in writing what she wants to communicate – they all have their own lives and their own jobs too. My ears perked up – and I hastened to ask if I could perhaps help Lu write during my time here in Madrid. Despite our aforementioned unique duo, we were conversing quite well. Before we parted ways, we made plans to meet again, and see if our two brains can combine to put Lu’s words down on paper. That is to say, on social media…of which I am a far cry from being an expert. In the end, I believe we will both learn a lot.
Lu mentioned that a great challenge with Hola Que Tal is the writing component. While Carlos, her sister, her cousin, a friend, her neuropsychologist, and speech therapist all volunteer their time to help Lu put down in writing what she wants to communicate – they all have their own lives and their own jobs too. My ears perked up – and I hastened to ask if I could perhaps help Lu write during my time here in Madrid. Despite our aforementioned unique duo, we were conversing quite well. Before we parted ways, we made plans to meet again, and see if our two brains can combine to put Lu’s words down on paper. That is to say, on social media…of which I am a far cry from being an expert. In the end, I believe we will both learn a lot.
I hope Malasaña is soon not known as simply “the place where patterned button-down shirts go to die, or to be bought at ridiculously high prices.” Rather, I hope it is known as the place where Lu lived (she’s moving in a few short weeks to be closer to her daughters’ school). Given Lu’s popularity in her barrio, she is well on her way. Perhaps the small bit I contribute can aid Lu in her endeavors to support other Spaniards with aphasia. Given her strong relationships (friends here in Madrid with different communication deficits, friends in Portugal, and connections to France, to name a few) – I imagine her efforts can extend beyond people with aphasia, and beyond Spain.
I hope Malasaña is soon not known as simply “the place where patterned button-down shirts go to die, or to be bought at ridiculously high prices.” Rather, I hope it is known as the place where Lu lived (she’s moving in a few short weeks to be closer to her daughters’ school). Given Lu’s popularity in her barrio, she is well on her way. Perhaps the small bit I contribute can aid Lu in her endeavors to support other Spaniards with aphasia. Given her strong relationships (friends here in Madrid with different communication deficits, friends in Portugal, and connections to France, to name a few) – I imagine her efforts can extend beyond people with aphasia, and beyond Spain.
Case Study Introduction
Case Study Introduction
05.31.22
05.31.22
Along with communication challenges (aphasia and dysarthria), the second theme for these case studies is “La capacidad surge de la necesidad” translated, “Ability arises from necessity.” That is to ask, do surrounding environmental factors (e.g., limited social support, limited financial resources) bring about a strong recovery through the mere fact that one must do so to continue on? On the other end of the spectrum would perhaps be learned helplessness. In this instance, referring to clients who perhaps feel they don’t need to make rehabilitation gains, because there is always someone there to do so for them.
Along with communication challenges (aphasia and dysarthria), the second theme for these case studies is “La capacidad surge de la necesidad” translated, “Ability arises from necessity.” That is to ask, do surrounding environmental factors (e.g., limited social support, limited financial resources) bring about a strong recovery through the mere fact that one must do so to continue on? On the other end of the spectrum would perhaps be learned helplessness. In this instance, referring to clients who perhaps feel they don’t need to make rehabilitation gains, because there is always someone there to do so for them.
An important distinction – this isn’t a defense of the idea to “pull oneself up by one’s own boot-straps.” After a severe brain injury, some abilities, no matter how hard one works, may just never return to the prior level of function. However, there can be a sense of scrappiness. A willingness to find an alternative method. Why do some find this, and others don’t?
An important distinction – this isn’t a defense of the idea to “pull oneself up by one’s own boot-straps.” After a severe brain injury, some abilities, no matter how hard one works, may just never return to the prior level of function. However, there can be a sense of scrappiness. A willingness to find an alternative method. Why do some find this, and others don’t?
I must also clarify, this is by no means an argument that some individuals are motivated, and others are not. As I learned in my first semester of OT school, “there is no such thing as an unmotivated client.” It is our surrounding contextual factors, our lived experience, and our unique cognitive make-up that combine to make each of us dance to a slightly different rhythm. And as occupational therapists, it is our role to help our clients find the beat.
I must also clarify, this is by no means an argument that some individuals are motivated, and others are not. As I learned in my first semester of OT school, “there is no such thing as an unmotivated client.” It is our surrounding contextual factors, our lived experience, and our unique cognitive make-up that combine to make each of us dance to a slightly different rhythm. And as occupational therapists, it is our role to help our clients find the beat.
A third theme for these case studies is a term many rehabilitation professionals idolize – independence. While this may be the goal for a client in the United States, Canada, England, or Australia – it is not a universal goal. Many societies place a higher value on interdependence. To connect things back to another favorite topic of mine, this can be seen in the language of occupational therapists as well. For example, ubuntu is a South African philosophy used to describe the interconnectedness between an individual and their community (Mahoney & Kiraly-Alvarez, 2019). This is to say, not every culture values independence as much as the US, Canada, England, or Australia do. I list these countries because they are also where an overwhelming majority of research in occupational therapy is conducted. As Castro et al. warned in their analysis of occupational therapy as a culture, “Specific knowledge, values, and meanings…supported by the western thinking [have underlined] the knowledge construction for the discipline since its beginning. This is presented as a fact, and also as an issue that requires deep and critical analysis” (2014).
A third theme for these case studies is a term many rehabilitation professionals idolize – independence. While this may be the goal for a client in the United States, Canada, England, or Australia – it is not a universal goal. Many societies place a higher value on interdependence. To connect things back to another favorite topic of mine, this can be seen in the language of occupational therapists as well. For example, ubuntu is a South African philosophy used to describe the interconnectedness between an individual and their community (Mahoney & Kiraly-Alvarez, 2019). This is to say, not every culture values independence as much as the US, Canada, England, or Australia do. I list these countries because they are also where an overwhelming majority of research in occupational therapy is conducted. As Castro et al. warned in their analysis of occupational therapy as a culture, “Specific knowledge, values, and meanings…supported by the western thinking [have underlined] the knowledge construction for the discipline since its beginning. This is presented as a fact, and also as an issue that requires deep and critical analysis” (2014).
From my limited experience, occupational therapy in Spain is also framed around independence, similar to that of the United States. However, some of the factors that come into play – the healthcare system, the job market, etc. – can make independence look a little different. Throughout these case studies, I will focus on what independence means to each individual.
From my limited experience, occupational therapy in Spain is also framed around independence, similar to that of the United States. However, some of the factors that come into play – the healthcare system, the job market, etc. – can make independence look a little different. Throughout these case studies, I will focus on what independence means to each individual.
Given the nature of case study work, it will be hard, if not impossible, to draw broad generalizations from these findings. Though a bit old for research purposes, Salminen et al.’s literature review of the case study method and its benefits for occupational therapists still rings true:
Given the nature of case study work, it will be hard, if not impossible, to draw broad generalizations from these findings. Though a bit old for research purposes, Salminen et al.’s literature review of the case study method and its benefits for occupational therapists still rings true:
“The purpose of case study research is to understand the chosen phenomenon and to learn about it in context. The careful selection of participants is important in case study research, but an individual study does not intend to represent large samples. It is therefore impossible to claim, or to expect to be able to generalize from a single case when statistical generalization about a population is considered” (2006).
“The purpose of case study research is to understand the chosen phenomenon and to learn about it in context. The careful selection of participants is important in case study research, but an individual study does not intend to represent large samples. It is therefore impossible to claim, or to expect to be able to generalize from a single case when statistical generalization about a population is considered” (2006).
In the end, I am not sure where these case studies fall – a case study approach, or case study research. The former “illustrate[s] the application of approaches or techniques in therapy, [and] are useful for describing a situation, but cannot be classified as case study research.” The latter is a “systematic research method…an effective way of gathering rich descriptive data that demonstrate differences and similarities between participants.”
In the end, I am not sure where these case studies fall – a case study approach, or case study research. The former “illustrate[s] the application of approaches or techniques in therapy, [and] are useful for describing a situation, but cannot be classified as case study research.” The latter is a “systematic research method…an effective way of gathering rich descriptive data that demonstrate differences and similarities between participants.”
Case study research can be descriptive, explanatory, instrumental, or collective. Data collection can be qualitative, quantitative, or both. Assessments, tests, observations, interviews, documents, and audio-visual material from multiple sources are used to collect data from multiple viewpoints (Salminen et al., 2006). The cases presented here are composed of mostly qualitative data, and voices from select family members, friends, and therapists were heard. However, I would hesitate to call my approach to these interactions “systematic,” nor “research.” I heard people’s stories, I asked questions. I presented an informal occupation- or task-based challenge and observed accordingly. If I felt it was appropriate, I worked with the individual to try a new strategy or two. Through it all, as we learned to do in OT school, I came in with an occupational lens. Perhaps this is my idealistic perception of the dynamic, but it did not feel scientific, it felt personal.
Case study research can be descriptive, explanatory, instrumental, or collective. Data collection can be qualitative, quantitative, or both. Assessments, tests, observations, interviews, documents, and audio-visual material from multiple sources are used to collect data from multiple viewpoints (Salminen et al., 2006). The cases presented here are composed of mostly qualitative data, and voices from select family members, friends, and therapists were heard. However, I would hesitate to call my approach to these interactions “systematic,” nor “research.” I heard people’s stories, I asked questions. I presented an informal occupation- or task-based challenge and observed accordingly. If I felt it was appropriate, I worked with the individual to try a new strategy or two. Through it all, as we learned to do in OT school, I came in with an occupational lens. Perhaps this is my idealistic perception of the dynamic, but it did not feel scientific, it felt personal.
As a profession, amidst the documentation and fast-paced system that the American health care system presents, I believe we have lost a bit of this interpersonal approach. During my time here in Spain, I’ve aimed to embrace the familial approach. This is part of what drew me to occupational therapy, rather than other medical professions, in the first place. I hope to carry these values forward with me to any future practice setting, and to stick to them as much as I can despite the common systemic push for quantity over quality.
As a profession, amidst the documentation and fast-paced system that the American health care system presents, I believe we have lost a bit of this interpersonal approach. During my time here in Spain, I’ve aimed to embrace the familial approach. This is part of what drew me to occupational therapy, rather than other medical professions, in the first place. I hope to carry these values forward with me to any future practice setting, and to stick to them as much as I can despite the common systemic push for quantity over quality.
Salminen, A., Harra, T., Lautamo, T. (2006). Conducting case study research in occupational therapy. Australian Occupational Therapy Journal, 53, 3-8. https://doi.org/10.1111/j.1440-1630.2006.00540.x
Salminen, A., Harra, T., Lautamo, T. (2006). Conducting case study research in occupational therapy. Australian Occupational Therapy Journal, 53, 3-8. https://doi.org/10.1111/j.1440-1630.2006.00540.x
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