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Before the illness, I used to tell myself that I wasn’t the most sociable person, that I didn’t need to make friends, that the ones I had were enough. I felt superior every time I said I didn’t need anyone but myself. Today, I recognize that those attitudes and the way I closed myself off to new people and experiences came from wounds, fear, and pride. After everything I’ve been through this past year, I’ve learned the importance of the people around me and how much I’ve enjoyed and grown from the relationships I’ve built.

I am grateful to every person who, with a word, a laugh, or simply their presence, reminds me how beautiful it is to share life. Today, I know that getting here hasn’t been easy. It’s been a struggle. And as much as I’d like to say I’ve done it all on my own, I have to acknowledge that, at some point, I wouldn’t have been able to see how much life is worth fighting for by myself. My family has filled me with love, and that love motivates me to want to be well. I’m thankful for the friends who came into my life years ago and have stayed to witness all these versions of myself, and, of course, for the friends and experiences that have arrived in the last times that without knowing it, have also played an important role in this process.

From all of this, I’ve concluded that there is no way to disconnect ourselves from the world around us. The beliefs we adopt, the values and qualities of our being, the limitations we impose on ourselves, and the fears we feel are undeniably connected to others. Therefore, understanding ourselves requires effort and a genuine desire to understand the world of other people.

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My parents got married five years after they met. In my life, I’ve never seen my father drunk; on the contrary, he is an exemplary and loving man. My family has mantain traditional roles to some extent, at least since I was born. My mother has been dedicated to household work, while my father has been the primary breadwinner. My dad is a teacher and a musician. In his youth, he was part of two rock bands, but making a living through music is always a challenge.

My mother is a marketer and worked in that field for several years before I was born. She is a woman who appears strong and unbreakable, as life taught her to be that way. Regardless her childhood, she is affectionate, caring and and warm. She is also creative and outgoing.

My father is more serious. He is very studious and hardworking, passionate about music and education. he is also very sensitive and loving and generous.

My parents broke the negative patterns from their families. Each gave us the best version of themselves, despite of their stories and circumstances.

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My brother Manuel is nine years older than me, and our relationship is a bit more laid-back, partly because my brother has always been more carefree. He was the sibling for games, "luchitas", and jokes. He taught me how to ride a bike, something I continue to enjoy. He used to take me to the forest to look for insects. I would defend him from my parents every time they were about to punish him and kept his secrets.

My brother left home relatively young, so we didn’t have much time for clash. He cried the day I was born and also cried the day I got into the hospital.

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My sister Jessica is 11 years older than me. She is very talented and creative. She fully embraced the responsibility of being the eldest. She is a bit overprotective but loving , she supports me and is there for me whenever I need her. She held me in her arms the day I was born, and those same arms hold me during my toughest moments. Our relationship isn’t free of conflict. In my teenage years, we frequently fought over various reasons, and even now, we often disagree on many things. Still, we love each other despite our differences.

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Hello! My name is Elizabeth Monroy Gómez, I am 22 years old, I was born on Aug 17th 2002. I am the youngest of three syblings. Everybody around me say I am the spoiled kid … I don’t know, maybe.

I am a very sensitive person, I think that crying is as necessary as laughing. I am grateful for what I am and for what I have. I love languages, animals and rap music. I enjoy doing exercise. Love, family and friends very important building block in my life, and last but not least I have Multiple Esclerosis.

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Loyalty emerge from gratitude and I have so many reasons to be grateful to my friends. They have walked with me in the hardest moments and it is a privilege for me to be by their side in the happiest times and in difficulties.

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I have to say they the first time I got genuine interested in social and political issues was when I met feminism. Feminism was the door to open up the spectrum of social injustices. The intersectional movement taught me about various structural conditions that normalized the violence that women from different backgrounds suffered and the need to arise the voice in order to transform our realities. Feminism also gave me something I am son thankful, my relationships with other women became more honest, gentle, friendly, and empathic. Now I relate better with my mom, my sister, my friends...

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Honesty is a value that I prioritize in my life, I think that if you want real and qualitity relationships, honesty is a must. Being honest is the only way that you allow life to guide to the right people and to grow from authenticity.

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Self-love has been one of my greatest achievements. I only have to remember when my death impulse was the strongest to realize how unattainable self-love seemed to me then. Now I recognize and value the strength and the courage I have built thanks to my self-love. It is an imperfect life project I know that as with any other kind of love, it demands a lot of effort, but it has its reward.

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I think I grew up in a home where social issues were a daily topic at breakfast, lunch, and dinner. My mother and my dad used to play protest music, I remember listening to Ana y Jaime, Mercedes Sosa, Piero, Colombian folklore, and rock music, it is my dad’s favorite. Then my siblings became Punks, they played aggressive music that also addressed political issues. They listened to ska and nowadays, whenever they put on a song I might start singing it unconsciously. Then I discovered Rap music which is contested too. If I had to rationalize why I am interested on social matters, I would in first place say that it is because of my family and in second place, because of music.

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"Ya viví lo que pude vivir

Perdón que me tenga que ir

En la noche conquisto el silencio

Y la ausencia del ruido genera un vacio"

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As I mentioned before I have had cognitive symptoms related to the language. This affects my self-confidence in many aspects and I get worry because language is what I chose to make a living. The risk of losing the ability to speak properly is one of my biggest fears and has made me wonder why do I make that much effort on this, if is this really worthy. It is my death impulse vs my life impulse. I truly want to think that everything will be in my favor and the love I feel for this faculty and all the possibilities it gives me will love me back.

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One of the things that increase the risk of suffering an EM relapse is emotional pain, in general the stress that the body suffers as a result. As I said before, at the beginning of my 2023 I started to have conflict with my couple. The months passed and I didn’t feel completely comfortable with the relationship, I was in the stage of trying to save something that being honest was not bringing me any good. All this stress was the reason I ended up at the hospital. Romantic love seems to be so innocent and in my case the experience I had regarding my health has dived me into thinking that I couldn’t expect more from romantic love than healthy aggravation. I know to build a relationship is not easy and it demands sacrifices, but in my particular case, how much would it cost me? This is a thought that I know is based on fear. But I also reaffirmed that the love is present in every single place and person that surround you. Our society gives so much importance to romantic love that other kind of love are left on a secondary place. My limited experience thought me that the most important love, the one that saved me from a very difficult moment was from my own, from family and friends and those are the types of love I want to cultivate.

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I think that symbolically Canela's death was the death of the life as I used to know it. She accompanied me in a huge part of my childhood, all my teenage years and the beginning of my adulthood, and she left in a moment I which life was teaching me to let things go and open up to something new that would change my life in many ways. Her absence was part of that. As it happened the same year I was diagnosed I blamed myself. There are many people with experiences in which their pets, without foreseeing it pass away in a particular moment when their owners are suffering any kind of pain or stress, they get ill with their owners. She started getting ill when I was facing a very painful emotional moment and therefore I was not there for her as I should have. I feel horrible about it and I think that if I had done more in the moment she needed me, maybe things would have been different. I am learning to live with the past and to be kind to myself.

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I remember an anecdote at the school. I was at Phylosophy class and the dicussion was "happinness", the teacher was asking everyone to tell him, under which circumstances we would loss the capability of being happy. My answer was: the day I loss any of my motor functions, I specified if I couldn't walk, then the teacher asked me if I thought people under those conditions didn't have the right to be happy or what I meant by saying so. I didn't know what to answer then, but today I would say that they have the right to be happy, but also the right to be unhappy.

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I got into the hospital on may, 3rd and released on may 9th . When I first got there I didn't expected to have such a long stay. However, something inside of me knew that it was not gonna be the kind of issue that you forget with the days, months or years there had been an insight of what it could be and that was a strong weapon because I had so much free time to inquire what it was. It was the VIP pass to death impulse.

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Here I will have to give an special award to the year 2023 to be the most challenging. Now I don't feel the same resentment of some months ago. However it was not easy at all.

I would enlist the things that happened that year:

I got heartbroken

I was diagnosed with EM

My childhood dog was diagnosed with sarcoma (an agressive type of cancer)

My dog passed away.

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"El ser humano es una puja permanente entre dos impulsos que guían su vida, uno para construir sueños y proyectos y otro para destruirse … Pelean todo el tiempo, lo llamamos los analistas: pulsión de vida, pulsión de muerte. La pulsión de muerte ingresa, cuando vos vacías tu vaso de amor, cuando vos no dejas lugar para el amor creativo, para el que hace bien."

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CÓMO AMARSE a uno mismo 🥰 - Gabriel Rolón y Marco Antonio Regil

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When I was at the hospital and my mom was visiting me, she used to take phone calls to speak with different people about the situation. I have always been a reserved person. I didn't feel comfortable with the fact that my mom was speaking about my private life with people that was not important for me. At that moment I hadn’t realized she was actually talking about her private life, the thing is that there was something my mom said that made feel rage. She said something about vanity, like "you know, young people and vanity" in regards of how I felt. At that moment I felt that my mom was not understanding everything that the illness would mean in my life. With the time I found out that she had identified something I would go through and would make part of my mourning.

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Some of the risk of EM are cognitive, my memory is not very brilliant, I might confuse words with very different meanings, I have had episodes in which I can not follow a conversation or simply my words are not fluent. This are some of my invisible symptoms.

My family is so academical, my dad is a teacher and he has achieved a master degree. He is so insisting on the necessity to continue my studies after my bachelor degree, and I am privileged for that, but under this circumstances academical life is very frustrating and makes feel insufficient, for sure I will continue my studies but in a ableist society, all of this things make you feel too little.

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By that moment I had a romantic relationship for almost 7 years, already, at the age of 21. I know, everything was wrong and despite my ego and my pride tell me not to talk about it, having slept on it over and over again I got to the conclussion that such experience had a huge impact on what I used to be and what I've become and, of course the perspective I have now about romantic love, which is socially al culturally and priority.

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“nepantla indicates space/times of great confusion, anxiety, and loss of control” (Keating 2006, p.8)

Nepantlera: living in the juction between two worlds, two identities, being and not being.

I have all my motor functions working now but since I was diagnosed I live in the fear of getting any kind of disability.

I think that even nobody in this world can say for sure that they won't get a disability, as an EM patient you start thinking about every possibility, you are halfway, you live in the fear of losing your abilities. You don’t know if you are lucky enough or if you are not, you wonder, when is it going to happen. It is the same uncertainty of a nervous impulse that doesn’t make it to the end.

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Since I was diagnosed I started a battle with my ego and as my mom said "vanity".

I have felt humiliated by the illness, I remember when I had the lumbar puncture, it was painful, very painful and I had been told not no move because of the risk of nerveous damage. My mom arrived and she took a photo of me, I don't know why she did so but when I saw that photo I felt strongly humiliated, I hated how vulnerable I seemed.

With the pass of the time there have been more situations concerning to the illness: having to go to the doctor every 3 months, being dependant to daily medicine not to aggravate my condition, having to wait to receive the medicine, not having the money to buy it myself and just be able to say "fuck you healthcare system" to assume that I am not that self-contained person, that actually my life is at the edge of the cliff of being dependent to something or someone else even for doing the most basic things. It hurts in the Ego because it challenges everything I used to gave value to myself.

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¿Por qué lloras? ¿acaso no ves la belleza de la vida?
La flor de aprendizaje que nace de cada herida
¿A qué temes? ¿tal vez a perder lo que no tienes?
Morir no es más que hacerse hueco para otro que viene

¿Por qué corres, peregrino? calma ya tu fiebre
Sabe más del camino la tortuga que la liebre
Así que saborea lentamente
No vivió más aquel que vivió más
Sino el que vivió plenamente

Contempla nuestra dádiva, como el sol desde arriba
Se derrama sobre el pájaro la canción de la vida

Tu casa es pequeña pero infinito es tu jardín
Todos somos ricos, heredamos la fortuna de existir
Desvela ese sencillo misterio y serás feliz
Haz lo que amas, no lo que el mundo espera de ti

Y no temas a las piedras del camino, amigo mío
Pues las piedras del camino son el camino en sí
Justo y perfecto como el fluir de la energía
Todo el mal que hagamos volverá a nosotros algún día
Pero quién obra de corazón no teme a equivocarse
Su error siempre es acierto porque es aprendizaje

Cada nuevo ser que nace es un papiro blanco
Sobre el que la vida escribe su hermosísimo milagro
Y existir es un regalo, la muerte un intervalo
Algo que sucede a todos no podría ser tan malo
Pero tú aún eres pobre porque tienes demasiado
Lo cual te ata y te impide mantenerte elevado

Líbrate del peso de los bienes
Pero sobretodo hermano mío, líbrate de lo que no tienes
Recuerda que el dinero no es más que un pobre ladrón
Que roba comprándolo todo, menos el amor

Ahora guarda el silencio y compensa el himno del mundo
Dando gracias uno aprende a desear lo que ya es suyo
Viviendo en el presente constante
De instante en instante, en la grandeza de lo insignificante
Pues quien descubre lo grande, se asombra con lo pequeño
Aquello que está compuesto con materia del sueño
No te muerdas más las alas, hay que dejarse vivir
La mente crea laberintos de los que no sabes salir
El dolor te hace fuerte, el sufrimiento debilita
Y cuando muere el miedo a la muerte, nace el amor a la vida
Y aunque ahí fuera el mundo está lleno de fuerzas sombrías
Cólmate de luz y aprende a proteger tu energía

Estás de paso por lo eterno
No hay mayor regalo que esta vida
Ábrelo y encontrarás todo dentro
Nada es de nadie porque todo es nuestro
Y todo está en ti porque todo está en todo, asómate dentro
Y una vez inmerso abraza este todo inmenso
Eres un átomo en cuyo interior cabe el universo
Un átomo en cuyo interior cabe el universo

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I grew up listening to people saying that friends didn't exist,or not giving much value to their friendships. Somehow it made me kind of selective with my friends. I am realistic that friendships can be circumstantial. But I have the luck to have my girls, my true friends. I've known them since I am a child and I am so grateful to make part of their lifes. They are the ones I think of whenever I achieved something or anything good happens, but also the ones I go to, the moment life feels heavier than usual.

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In regards to my extended family when I was growing up I started to perceive hypocrisies, moralism, judges and contempt. My parents used to be strongly criticized for their manners of parenthood and blamed about my syblings behauviour. My syblings were "the bad influence" for the youngest cousins. Our family was seen and treated as the black ship, my syblings didn't have a bright future and maybe, if God was compassionate enough my story would be different. All this determined the way I relate with them, I keep distant and I decided that I was the one to define who were part of my family.

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"Elizabeth has an amazing health, rarely she gets a flu"

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"Elizabeth has an amazing health, rarely she gets a flu"

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When I was a child my mother used to say, very proud, that I had an amazing health and I grew up giving it so much value, as if it was an achievement that gave me worth to as a person.

To have a good health was to be strong, not to give problems to my parents. Being unhealthy or ill is to incomodate, to worry people around you, is pitty, and something to be ashamed for.

This is something I wrote about the guiltiness I felt because of having an illness, concerning to this burden that people around you have to hold regarless of they saying the opposite. Accepting your illness is not hard only for the person dianosed but also to all the people that love you.

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Canela has been one of the most wonderful experiences in life. She filled our life’s with so much joy. And now I understand that she had a purpose in my life. I was 9- or 10 years old, she was running desesperately away from fireworks. We gave her shelter in our garden. She was supposed to have owners, but she was never treated as a family member. One day we saw many male dogs chasing her. We had to bring her into home with the promise of sterilizing her and it would be it. But we fell in love, she just simply stayed, at the beginning my dad was the first to opposed and it was difficult to convince him, actually I used to think that he was never fully convinced, he had just resigned, I knew I was wrong the day she passed away. I never saw my dad crying the way he did that day. Canela was very important to all of us, in December it will be a year since she left and it still hurts. We love her and we can't imagine how our life would have been without her presence.

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EM as "Elizabeth Monroy" Or as "Esclerosis Múltiple"?

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EM as "Elizabeth Monroy" Or as "Esclerosis Múltiple"?

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When I was thinking about what has been determinant to my identity, no matter how much I wanted to think far away from EM, I realized that every perception I had now about my life, the aspects I appreciate the most, have passed through all that the illness brought with it. I have had this conflict because even in conversations, in honest conversations, my brain always find the way to even switch something into a metaphor about how my body works.

With this I want to say that at the beginning I was so worry not to be related with the illness, maybe trying to hide something that is simply there and has the right to be heard. I know that I am much more than this, that I was so many things already before her. The fact is that that I don’t want to ignore her anymore, honestly speaking I am so proud of the person I’ve became and I wouldn’t be half of what I am now without EM influence.

So, yes it is EM as Elizabeth Monroy, BUT ALSO, as Esclerosis Múltiple.

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It started at the hospital, after being said that there was a possibility that I had EM. inmediately I started looking at the internet, I found on tik tok a video about it and the first thing to highlight was the fact of being the second cause of disability in young people. There my world fell apart, I wanted to believe that it was something different but as the "realistic" person I wanted to be I started convincing myself and imagining how my life would be, I said to myself that I was not going to life a life like that. With the days the spectrum of possibilities extended. All among the neurodegenerative, self-inmune and orphan possibilities. None of them were better options. My relapse was manifested on my eyes so I was told it could be Neuromyelitis Optica, which is known to attack the eyes. Of course it was not a life option for me.

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I am not sure of the right moment or motivation that I decided it was enough of escaping and avoiding my reality. I don’t know where the strength came from. It just happened. I was tired of complains and victimization. If I didn’t want people to feel pity for me I was the first one that must stop it. Even rage comes and goes constantly, I’ve learnt to listen and I identify it comes from anxiety, and death impulse, and I don’t want anything but to live.

I was tired of being stuck so I assumed the responsibility of my well being. I accepted that my body is just trying to keep me safe and I had to help it, so I started to be grateful, I realized how strong and capable it is, and that vulnerability don’t make it less of it. I live more in the present moment something that was not a constant before the illness, it is contradictory under the circumstances but I don’t wonder anymore. If EM was what I needed to be more self-responsible, compromised, to start thinking about the things that really matters, to be grateful and lo live in the present moment there’s nothing more than being thankful with her, for what she came to teach me and profoundly thankful and proud of myself for listening, and have the strength to continue with life, the will, courage and braveness to continue this journey.

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My siblings already had full lives by the time I was born. They had shaped part of their identities already. In my case, I don't conceive myself and what I am without their influence. My sibling are the most beautiful thing I have in my life.

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When I came into my parents' lives, I took them by surprise. My mother was not supposed to be able to have any more children. On top of that, my parents were going through relationship problems. I suppose the arrival of a new baby gave them a strong reason to stay together. Today, I can say they have a good relationship and that there is love beyond mere commitment.

My mother's childhood was difficult. She had an abusive and violent father. She grew up watching her father come home drunk to beat my grandmother. As if it wasn't enough, she also had abusive siblings. She is the youngest and had to endure all that family frustration in the form of mistreatment. She tells me that getting married was never part of her plans, naturally because she feared repeating her mother’s story.

My father’s childhood was also difficult, though at least he had good siblings. Even though my grandfather liked to drink, he was not violent. However, alcohol always caused conflict to my father. He is the oldest son, and he worked and studied from a young age. At one point, my grandfather considered no longer providing his education, but my grandmother opposed. As an adult, he continued to work and took the responsability fo continuing to support his siblings.

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When I saw this interview I felt like everything was making sense to me. Even all experience with illness are different form person to person I could find some views in common that made me realize that I was going through a normal process, I am living a type of mourning the best way I can, with all the learnings and tools that I have found in the path.

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#Gordofobia y la magia de la esclerosis con Esmeralda Soto | T3. Cap #12 La Magia del Caos