El podcast de Julio Chojeda Torres: Episodio 3

Note: In this episode, I catch up with Julio and discuss lifting and positioning with a disability. A fitting topic, because not long after recording this podcast, I went to the hospital to get an x-ray to prepare for the operation for taking Spinraza, the first drug to treat people with our condition. Convincing the people in the radiology department on the importance of proper transfers was an uphill battle, to say the least. But as a recent workshop given at the Ann Sullivan Center in Lima showed, proper lifting is a sweet science. — Matt

Partial transcript

Julio: At 68 years old, with SMA, things always happen that surprise me. So, not long ago, at the end of May, the administrative personnel at the Ann Sullivan Center where I work gave rigorous medical exams, and I was no exception. Alberto, my personal assistant brought me to the medical center where they provided all of the facility arrangements that severe disability required. I took the psychological tests on the first floor, not on the second like everyone else, and also, on the first floor, they performed the electrocardiogram with a portable piece of equipment. The results of the first test did not seem normal, and I thought it was due to the force exerted on my body with each transfer I underwent from the time they got me out of bed at 4:00am to the time they put me in the stretcher around 9:30am. The question that the technician and the doctor that were giving the consultation had was: Have you had a pre heart attack before? I started to worry. I said no, and they did two additional tests to see if the wave pattern repeated. The medical center was not far away, so we travelled by foot (with me rolling, of course), while I attempted to adjust myself to the potential diagnosis and assimilate to this new condition, which would be added to an already extensive list of secondary conditions I have gotten over the years.

Experience helps when one is of my age. Just another battle scar, I told myself, and as always, there was no other option but to keep fighting. It took me longer to accept the glaucoma diagnosis after overcoming the retina detachment of my right eye in 2012, than it did this new condition. And how it helps to have work to distract you! My worry took a back seat, and my mind became focused on finishing the translation to Spanish of the PowerPoint slides that Jennie Atwood, Ellen Pope, Brenda Randall and Joan Augustyn required for the workshop that the Ann Sullivan Center was organizing on “Lifting and Positioning” and “Sensory Processing, Eating and Sleeping Issues.”

In the June 3 workshop on Lifting and positioning, I observed the extraordinary work displayed by the 4 North American professionals in brilliant practical demonstrations with participant groups. Seeing such knowledge put to action caused me to think back to my past, which I have a tendency to do, and about how much this would have helped my mother Julia to learn how to lift me off the floor when I would fall, or how to go from the floor to the bed when lifting me had become impossible for her. Or a certain English gentleman in the ’80s, who offered to help his compatriot and my friend, Barbara Spears, by lifting me out of the car when we got to the Church of the Good Shepherd of Miraflores for the 10am service, and because of a lack of proper technique, I fell on the ground. And right afterward, Mrs. Spears, in the blink of an eye, lifted me up and sat me in the wheelchair. The experience of having helped her husband with muscular dystrophy day in and day out explains how she, at 1.6 meters, could lift more than that man, who must have been 1.8 meters tall!

The times were different back then, but the other day during that workshop, I was reminded that the purely medical focus toward disability is just as strong now as it was then, ending in a diagnosis and a goodbye. As if I had gone back in time, I spoke with a mother from CASP with a child affected by Duchenne muscular dystrophy, and I know that she feels helpless because she cannot do anything for her son, and because the state and the law do not grant any assistance to people with disabilities. I remembered my mother, because while she saw how my body was deteriorating, I never saw her depressed, but rather she had immense faith. But I imagine how she must have cried when she was by herself, because she had no one to talk to about her child’s specific problem. Three weeks later, the official results of the medical exams showed that my heart was fine, according to the cardiologist, and that a stomach bacteria had been detected in my blood and urine tests. Which must be true, because on May 28, I was feeling worse after each test of the many I had to take up to 1:30am the next day. Fortunately, I had an attendant and was at CASP. Without sleep or strength, with the help of the translators Olenka and Katherine of UNIFE, we finished the seminar project, and after resting 2 hours at the department of CASP, I left.

And if anyone asks, “Why is a person with spinal muscular atrophy, in a developing country, where I have gone from adolescence to old age, still alive?”, the answer is, the force of will and courage are strong factors, as well as the help received from people in solidarity from time to time. It is also true that God responded to my prayers through CASP, which has constantly been at my side for the last 30 years, and which for the past five has subsidized my living arrangements, as it were, via an apartment to sleep in Sunday through Friday, because the progress of SMA and my dependence on others for my care, generated more costs than I could take on.

Retirement would bring its own problems, but there is hope, although I would also like to have Spinraza even though the 750,000-dollar price tag says different. Today more than ever, miracles are necessary for someone who plays by the rules in an unfair fight.

El podcast de Julio Chojeda Torres: Episodio 2

A las personas que escuchan, grabamos este episodio hace más de un mes, pero me pasó mucho tiempo preparándolo para poder poner en el blog. Grabamos otro pronto para dar más noticias de lo que hablamos aquí. Gracias, — Matt

Dear listeners, we recorded this episode more than a month ago, but it took me a long time to prepare it for posting on the blog. With will record another one soon with more updates! — Matt

Below is a loose transcription:

Matt: We were going to speak more about your life experiences in this second episode, but your country has been in the news lately. What can you tell us about the flooding rains that have affected your country, and what do you know about the situation of people with disabilities who live in the affected areas.

Julio: Peru has been affected by what NASA has called heavy rain in the northern part of the country and what journalists call the coastal El Niño. The ocean temperature, which should not exceed 22 degrees Celsius in the north of Peru, has been 5 degrees above that, which caused a lot of evaporation of ocean water, the formation of large clouds that proceeded to drop all their content on the high and low regions of the Andes mountains, causing the rivers and their tributaries that flow into the Pacific Ocean to flood cities and towns in their path toward the ocean, and large amounts of mud and stone to slide through ravines where townspeople had built their homes, which were destroyed in the path. The departments of Tumbes, Piura, La Libertad and Lambayeque in the north are flooded with great material loss, especially Piura, where in the last few days, the river of the same name flooded the department capital and put districs like Catacaos under water. The river had a discharge of 3,400 cubic meters per second.

In Lima, the mudslides, that mass of mud and rocks, increased the levels of the rivers Chillón, Huaycoloro and Rimac, to an average of 100 cubic meters, and sowed destruction in the districts of Carabayllo, Carapongo, Chosica, Huachipa, San Juan de Lurigancho and Punta Hermosa. The central highway is destroyed in many stretches, hundreds of people who lived on the riverbanks saw their whole life’s work destroyed in a matter of seconds. The rough waters of the Rimac destroyed buildings and bridges and left the capitol without water for days.

In Lima, due to the mudslides, the water supply was suspended in more than 26 districts, because the treatment plant of the Atarjea could not process the waters with high mud content and because the floodgates had to be closed to avoid major damage to the plant from the enormous rocks that were carried by The Talking River, as they call the Rimac. The capital had to form large lines in the water supply or in the fire protection pump in order to provide a little water. The housewives saw with astonishment how the prices of products that come from the affected regions, like sugar, rice and bananas, rose in the market.

The inconvenience of the lack of drinking water, the rise in the prices of food, or the rain in the capital of Peru are nothing compared to the tragedy thousands of compatriots in the north of the country are living through, who do not have anywhere to sleep, eat, get dressed and move on with their lives. Generous international help is somewhat alleviating the situation of the victims, and the task of rebuilding on safe ground is monumental and will take more than ten years. Our land is suffering in these moments, but history tells us that the spirit of the Peruvian grows with adversity. We will rise; we only hope that this time it will be with previsions and planning.

On TV they have only showed the rescues of the elderly and the blind in the north; and in Lima, I have only caught on television, as if it were a painting, the remains of a wall of a house, carrying a folded wheelchair along the waters of the Rimac River. What could have happened to its user? I only hope that the people in wheelchairs who lived close to the riverbed were rescued on time.

What do you think, Matt, about Spinraza, which is being given to children with SMA I in your country? Do you know any children in your area who are receiving this costly treatment for free, and what positive changes are they observing? People like you and me, who have SMA I and II — is there any hope for us with this drug?

Matt: Well, that remains to be seen. I have an appointment with the neurologist next week and will let you know what he says. As far as the children we were discussing before the show, with the video of the young child, with SMA II I believe, walking, yes I know them. Those are the children of the founder of Stop SMA in Jackson, Mississippi. I’ve been to most all their funding events since they were formed when their first child was born. And my brother was a member of their organization.

It is like a miracle to see all of this happening. Just five years ago, I remember always thinking, “People are always talking about a cure or a treatment or what have you, but it is a long way off.” It just wasn’t a reality for me then. To see it unfolding like it is, with SMA I children living longer and SMA II children walking around, it is truly a miracle.

What remains to be seen is the cost and the insurance. With the drug costing hundreds of thousands per year, I’m sure there will be hurdles.

El podcast de Julio Chojeda Torres: Episodio 1

Welcome to Julio’s first podcast episode. After passing around different ways Julio could blog without having to type too much with weakened hands, I said, “Why don’t we just record our conversations and put them on your blog in a podcast?” So that is what we have done, and we hope this will help Julio both stay in contact with his friends in the disability and education communities abroad, as well as anyone else interested in hearing reflections from a person with spinal muscular atrophy hailing from Lima. Unfortunately, we don’t have the manpower to transcribe/translate the episodes for now, but I hope this letter from Julio, dictated in Spanish using Dragon and translated by yours truly, will serve as a nice summary for non-Spanish speakers or those unable to play the audio.

Hello friends,

My name is Julio Chojeda Torres. I have had spinal muscular atrophy since birth, I live in Peru, and I don’t do much. I am 68 years old. To live so long with this neurological condition is a miracle not only in my country, but in any third world country, because the laws in favor of people with disabilities do not work, not only because of a lack of budgeting, but because they are often not enforced.

You ask me if Peru is a developing country or a third-world country. For me, both terms mean the same thing, and they are used to refer to poor countries of our Latin America, the countries located on the African continent, and any other continent if the country is in a situation of poverty. The term “third world” was used for the first time during the Cold War to refer to non-allied countries, while the United States and its allies were dubbed “first world” and Russia and its supporters, “second world.” The term “developing countries” sounds better and is less pejorative, because we only ever know our own single world.

Matt, you ask me if Peru could become a first-world country in the span of a decade, as some people claim. If the question was answered by someone from today’s government or another representative of the governing elite, he would tell you that the gross domestic product of Peru has increased considerably in the last 20 years and that becoming a first-world country would be around the corner. When I was a child, I was intrigued by a quote that the famous researcher of the Peruvian reality, Antonio Raimondi, had expressed at the end of the nineteenth century, referring to his enormous riches: “Peru was a beggar sitting on a bank of gold.” In the 50s, the export products of this “beggar” were sugar and cotton, as well as copper, silver and gold. Sixty years later, Peru is not an industrialized country, and as before, it continues to sell raw material to first-world countries, including China, without receiving the just compensation it deserves for being the owner of such natural resources. Economic growth is not the same as development, and Peru, without solid institutions like the judiciary, which does not ensure the law prevails over the interests of the government of the day or other groups with power, it is still far from achieving that national objective that history would approve.

That is all, friends. Until next time.

Thank you,


PS. Websites describing the situation of abandonment of people with disabilities in Villa Rica, northeast of Lima.


The situation of people with disabilities in Lima is not much different, even if appearances say otherwise.

65 años con Atrofia Muscular Espinal: Un milagro en Perú

He cumplido 65 años y aún me cuesta creer que haya llegado a esta edad. Un milagro en verdad porque nací con una enfermedad neuromuscular progresiva denominada Atrofia Muscular Espinal, y no en un país desarrollado donde las personas con discapacidad severa cuentan con un sistema que los ayuda a lidiar con necesidades cada vez más crecientes, sino en Perú donde las personas con discapacidad severa y sus familias están solos para hacer frente a la adversidad.

My mother Julia and me (in 1994) / Mi madre Julia y yo (1994)
My mother Julia and me (in 1994) / Mi madre Julia y yo (1994)

No obstante esta diferencia de realidades, me siento bendecido por Dios porque puso en mi vida a una madre extraordinaria que me enseñó desde niño a luchar contra la adversidad, una  madre con mucho amor y coraje que a través de sus propias circunstancias de vida, me ayudó a fortalecer el espíritu, tan necesario para esta lucha de largo aliento. Aún más, ya en su ancianidad, mi madre Julia, quien había estado haciendo frente al Parkinson por más de una década, se fracturó tibia, peroné y cadera de la pierna derecha; y lejos de amilanarse, no se rindió y con sus 82 años a cuestas, hizo todo lo que tuvo que hacer para ponerse nuevamente de pie y volver a caminar por el lugar donde vivíamos, esta vez empujando una silla de madera mientras se le compraba su andador. Cuando las fuerzas físicas se le habían ya agotado, esperaba sentada en su silla por mí, hasta que yo regresara del CASP. Entonces se ponía de pie e iba con su andador hasta la cocina para traerme un poco de té. Qué feliz se sentía de poder ayudar a su hijo menor de esa manera, qué recuerdos que me dejó, y qué lecciones para aplicar en mi propia vida.

Mi madre Julia se reunió con nuestro Señor el 05 de septiembre de 1998, pero continua viviendo en mi mente y en mi corazón, y la sigo viendo en los ojos de mis hermanos César y Miguel, quienes me visitan con frecuencia en el Centro Ann Sullivan, no obstante sus propios problemas de salud; y en los de mi hermana Rosa quien mantiene una lucha aparte con un problema de salud muy serio. Todos ellos estuvieron a mi lado las veces en que estuve hospitalizado, en especial recuerdo la de 1996, cuando parecía que mi vida se extinguía. 53 días en la Unidad de Cuidados Intensivos, y de milagro me recuperé. El amor y la fe de una madre, el apoyo de los hermanos, las plegarias de tantas personas hicieron posible que Dios me concediera un tiempo de vida adicional.  Ellos, mis cuidadores principales, ya no están en edad ni tienen fuerzas para cuidar de su hermano, pero están y estarán conmigo hasta que el Señor disponga otra cosa.

My mother Julia giving me a cup of tea (in 1997) / Mi madre Julia dándome una taza de té (1997)
My mother Julia giving me a cup of tea (in 1997) / Mi madre Julia dándome una taza de té (1997)

En este recuento de anécdotas y agradecimientos, viene a mi mente  Jeanie Schielfelbush, entonces una joven estadounidense, quien en junio de 1987 se presentó en la puerta de mi casa con el párroco Giuseppe Mizzoti de la Iglesia la Visitación, trayendo consigo un proyecto de almuerzos gratis para niños y ancianos pobres a través del sistema de padrinazgo de la organización Christian Foundation for Children and Aging de Kansas, Estados Unidos.  En aquel momento, en que el destino jugó a mi favor, escribí más de 100 cartas de presentación para los niños en búsqueda de padrinos en los Estados Unidos; y como resultado de esa visita providencial, no sólo se proporcionó alimento diario en el comedor Belén a ese centenar de niños, sino que yo tuve la oportunidad de conocer a la Dra. Liliana Mayo, Directora Ejecutiva del Centro Ann Sullivan del Perú-CASP; y en el tiempo, un trabajo que cambió toda mi existencia – traductor de artículos utilizados en la capacitación de padres de familias y profesionales que trabajan con personas con habilidades diferentes, y encargado de datos estadísticos de las Escuelas de Familias, y Notas de Padres.

A mix of the old and new building of CASP (in 2002) / Combinación del edificio nuevo y antiguo del CASP
A mix of the old and new building of CASP (in 2002) / Combinación del edificio nuevo y antiguo del CASP

El Centro Ann Sullivan de Perú-CASP, buque insignia de la Educación Especial en Perú, como todos saben, es un centro internacional de educación, capacitación e investigación que enseña a personas con habilidades diferentes, sus familias y profesionales que trabajan con ellos. Esta gran institución que prestigia a nuestro país, y de la cual estoy sumamente orgulloso de formar parte de su personal, es también un centro que apoya a sus miembros en los momentos más difíciles de su vida. Teniendo una enfermedad degenerativa y sabiendo de mi necesidad de contar con equipos que facilitarán mi vida, no sólo me han ayudado a través de los años a conseguir equipos donados sean sillas de ruedas eléctrica o computadoras o teclados que pudiera presionar a medida que mi condición neuromuscular avanzaba; también tuvieron en cuenta, la accesibilidad al baño que utilizaba, cuando las propias instalaciones del centro se modificaban ya sea en el edificio antiguo o en el nuevo. Y para no olvidar nunca, cuando mi madre fue operada de emergencia por su fractura de cadera, o cuando ella falleció, o cuando estuve al borde de la muerte o cuando sufrí desprendimiento de retina en 2012 y casi pierdo la visión del ojo derecho o cuando ya no tuve apoyo de la movilidad para regresar a casa después del trabajo, CASP estuvo siempre a mi lado. Actualmente, cuando ya no se puede regresar a casa diariamente después del trabajo, y debe uno seguir ganándose la vida para seguir subsistiendo, CASP  me libera de ese estrés diario del cómo ir y venir, y permitiéndome pernoctar  en el apartamento del Centro durante la semana, me da oxígeno para hacer frente a otras necesidades.

At breakfast time at the CASP apartment (2014) / A la hora del desayuno en el departamento del CASP (2014)
At breakfast time at the CASP apartment (2014) / A la hora del desayuno en el departamento del CASP (2014)

Si he vivido más de lo esperado, con este tipo de enfermedad progresiva, y en un país donde las leyes de apoyo sólo existen en el papel, ha sido porque el Señor me dio una gran familia, y un lugar de trabajo donde lo imposible se hace posible.

Gracias madre mía, gracias hermanos, gracias a la Visitación, gracias Liliana y Judith, gracias CASP; y gracias a todos esos ángeles que vinieron en mi ayuda de distintas partes del mundo, y en diferentes fases de mi AME, para hacerme sentir que no estaba solo en esta lucha. Gracias Dios mío porque sin ti nada hubiera sido posible.


Julio Chojeda Torres

In front of the apartment (December 2013) / Frente al departamento (diciembre de 2013)
In front of the apartment (December 2013) / Frente al departamento (diciembre de 2013)
With Denisse Ramos, coworker at the administration office (in 2014) / Con mi compañera de trabajo Denisse Ramos en la oficina de administración (2014)
With Denisse Ramos, coworker at the administration office (in 2014) / Con mi compañera de trabajo Denisse Ramos en la oficina de administración (2014)

65 Years with Spinal Muscular Atrophy: A Miracle in Peru

Translated into English by Julio, with the help of his friend Matt

I have just turned 65 years old and I still can’t believe it, that I have reached this age. It is a miracle come true, because I was born with a progressive neuromuscular condition called spinal muscular atrophy, not in a developed country where people with severe disabilities have a system to help them deal with the increasing needs and secondary conditions caused by this devastating disease, but in Peru where severely disabled people are on their own.

My mother Julia and me (in 1994)
My mother Julia and me (in 1994)

In spite of these real differences, I was blessed by God because HE gave me an extraordinary mother who taught me to fight against adversity since I was a child, and helped me strengthen my spirit through her own living circumstances, which ended up being very important in this fight with SMA over the long run. Even, in her old age, my mother Julia, who had been fighting with Parkinson’s disease for more than a decade, broke her tibia, fibula and hip. At that time she was 82 years old but never surrendered.  Instead she did all what she had to do to get up again and walk around the place we both lived by pushing a wooden chair until she got a walker. When she could not do this anymore, she used to wait for me, seated in her wooden chair, until I returned from work. Then she rose to her feet and with her walker she went to the kitchen to fetch me a cup of tea. She felt tremendously happy to help her youngest son in this way. What memories she left me! What lessons to apply to my own life!

She reunited with our Lord on 5 September 1998, but she continues living on in my mind and my heart, and I even see her in the eyes of my older brothers Miguel and Cesar, who still find time in spite of their own chronic health problems to visit me at the Ann Sullivan Center where I live, and in the eyes of my sister Rosa, who is dealing with a serious health problem. I still remember vividly when I was hospitalized in 1996, fighting for my life for 53 days in the ICU until I recovered miraculously. The love and faith of a mother, the support of brothers and the prayers of so many made it possible that God would grant me additional years in this life. All of who were my primary caregivers are no longer young and cannot take care of me anymore but I know that they will be with me to the end.

My mother Julia giving me a cup of tea (in 1997)
My mother Julia giving me a cup of tea (in 1997)

Here retelling these stories and occasions for thanksgiving, I recall Jeanie Schielfelbush, a young American who appeared at my door with parish priest Giuseppe Mizzoti of the Visitacion Church in 1987 with a project to provide free lunches for the poor children and elderly through the sponsorship system of the Christian Foundation for Children and Aging People. In that moment, when destiny was on my side, I wrote more than 100 introduction letters for children who were looking for sponsors in the United States. As a result of this providential visit, not only daily food has been provided to poor children of the Visitacion Church, but I was given the chance to meet Dr. Liliana Mayo, Executive Director of the Ann Sullivan Center; and in a short time, she gave me a job that changed my whole life, a job translating articles used for training parents and professionals who work with people with different abilities. I was also put in charge of statistical data of the Schools of Families and the Notes of Parents.

A mix of the old and new building of CASP (in 2002)
A mix of the old and new building of CASP (in 2002)

The Centro Ann Sullivan de Perú-CASP, the flagship of special education in Peru, as everyone knows, is an international center of training, education and research that educates people with different abilities, their families, and professionals working with them. This great institution that gives prestige to our country, and which I am greatly proud to be part of, has helped me through the years to get donated equipment that made my life a little easier as my neuromuscular condition progressed. They also kept the accessibility of the bathroom I used in mind in the old building and in the new one. Most important, when my mother was operated on emergency because her broken hip, or when she died, or when I was on the brink of death or when I almost lost my right vision in 2012 because of retinal detachment or when no taxi driver wanted to help me get into and out of the car and could not go to work or return home, CASP was behind me. Today, when I cannot return home daily after work but still need this work to continue to support myself, CASP helps relieve this stress by allowing me to stay in an apartment at the center during the week, giving me the ability to face other necessities.

At breakfast time at the CASP apartment (2014)
At breakfast time at the CASP apartment (2014)

So if I have lived more than expected with this kind of progressive condition in a country where welfare laws only exist on paper, it has been because the Lord gave me a supportive family and a place where the impossible is made possible to work and fight for my life.

Thanks to my mother, my brothers, the Visitation church, Liliana and Judith, CASP, and all those angels who came to my aid from different parts of the world and during different phases of my SMA in order to make me feel like I wasn’t alone in this fight. Thank you, my God, because without you nothing would have been possible.


Julio Chojeda Torres

With Denisse Ramos, coworker at the administration office (in 2014)
With Denisse Ramos, coworker at the administration office (in 2014)
In front of the apartment (December 2013)
In front of the apartment (December 2013)

Gabriel Muro Rodríguez sigue viviendo en los corazones de quienes lo amaron

Gabriel Muro Rodríguez 1949 - 2013
Gabriel Muro Rodríguez
1949 – 2013

No hace mucho, en  marzo de este año, cumplí 64 años de vida, y lo que debía ser una celebración por el milagro de llegar a esa edad teniendo una enfermedad neuromuscular progresiva como la atrofia muscular espinal, se convirtió en una dicotomía de tristeza y alegría. Por un lado, se sentía la ausencia física del amigo Gabriel, a quien el cáncer se había llevado el mes anterior; y por el otro, mi amigo Charly Castillo contaba unas ocurrencias que podían hacían reír hasta a los muertos.  Se percibía el sentimiento grato que un grupo de vecinos transmitía  hacia mi persona, el afecto de Daniel quien sacrificaba sus horas de descanso para poder atenderme cuando la visita se marchase.  Y toda esa sensación de alegría y camaradería que a su modo encarnaba en vida mi compadre Gabriel.

Era 2 de abril de 1962, había asistido a mi primer día de clase en el turno mañana de la Gran Unidad Hipólito Unanue, y debía regresar a las clases de 3 a 6 pm. Ese tarde mi madre Julia me acompañó al paradero para tomar el tranvía que me llevaría al colegio (distante unos 2 Km)   cuando pasamos por el conjunto habitacional “Hogar 16 de Julio”. Gabriel conversaba con un grupo de jóvenes de nuestra edad, 12 o 13 años, cuando lo divisé y reconocí por la insignia que portaba que éramos del mismo colegio. El ir con mi madre por única vez, con el paso de los años, se transformaría en toda una gran historia. Según Gabriel, quién estaba fumando con sus amigos cuando pasé por su lado, yo iba agarrado de la mano de mi madre, y eso no era ya una conducta de los adolescentes de entonces. Así no fue, pero Gabriel enriquecía año tras año dicha anécdota cuando hablaba sobre el inicio de nuestra gran amistad con amigos de diferentes círculos. Unos años más, y Gabriel hubiera contado que mi madre me llevaba de la mano hasta quinto de media. Así de imaginativo era, y creyente de su versión.

Julio Chojeda Torres, Gabriel Muro Rodríguez, Percy Rojas
Julio Chojeda Torres, Gabriel Muro Rodríguez, Percy Rojas

Yo estudiaba el primer año de media, mientras que él cursaba el segundo año. Amigos de Gabriel, mayores que nosotros (dos o tres años), que estudiaban conmigo en el primer año I, a quienes él conocía porque se quedaban castigados después de clases por su mal comportamiento, le habían hablado para que me pegara un día a la salida del colegio. Yo no los ayudaba en los exámenes, y por tanto debía recibir un escarmiento. Yo era bajo de talla, pero tenía  experiencia de calle y muchas peleas en la escuela primaria en mi haber. Cierto me caía ya, pero acepté pelear a la salida porque entonces eso era lo correcto.  Frente a frente, Gabriel le dijo a Flores Velasco, Ramírez y a otro cuyo apellido no recuerdo: “Yo no peleo. Él es de mi barrio”. Con el tiempo, este constituyó mi anécdota, así, medio en broma medio en serio, contaba que Gabriel fue el primer matón contratado de la época. En 1963, cuando jugaba en el recreo de las 10 am, esos “tres compañeros del 2F” me dieron de golpes. Me defendí lo mejor que pude, pero la superioridad numérica se impuso. Prometí romperles el alma cuando tuviera más edad, pero  su mal aprovechamiento los llevó a otro colegio, y yo empezaba  a perder fuerzas en forma acelerada.

En 1964,  cuando pasé a tercero de media y me encontré con Gabriel, quién había repetido el año, en Tercero A, sabíamos que éramos amigos. El solía sentarse en la última fila mientras que yo lo hacía en la primera. Esa mañana, hicimos nuestra primera negociación de las muchas que hicimos en nuestras vidas. Ni para él, ni para mí, escogimos una carpeta de la tercera fila.

En 1965, en uno de esos días, cuando los estudiantes decidíamos no entrar a clases, sea para ir a ver una de las películas de estreno de James Bond, o para vagabundear, Gabriel me dijo: “Enano, cuando me case y tenga un hijo a quien llamaré Gabriel Alonso, tú serás mi compadre”. Sí loco, le respondí.  Muchísimo tiempo después, no nació el hijo imaginado en la adolescencia sino Rosángela, y aun cuando varios colegas suyos le habían solicitado tal honor, Gabriel cumplió su palabra. ¡Así era mi compadre! Un hombre de palabra.

Group studentsHUEstuvo a punto de perder el año en 1965 porqué sacó tres cursos para estudiar vacacional, entre ellos biología, un curso temido por los estudiantes de cuarto año. Flores Pezo, el extraordinario profesor del curso, solía decir: “Él que no aprueba el curso en 9 meses no lo aprobará en el vacacional”. Gabriel fue la excepción. Su futuro compadre, el mejor estudiante del curso, lo preparó día y noche, y él aprobó no sólo este curso sino también los otros dos, y pasó a quinto de media con todos nuestros amigos. Un logro que lo enorgullecía, y que recordó toda su vida.

Otra anécdota que solía contar a través de los años, se refería a un examen oral que el profesor Flores Pezo tomó a los alumnos de Cuarto A.  Entonces, todos sin excepción estaban siendo masacrados por el profesor, a quien no se le ocurre mejor idea que llamarme para darles una lección de biología. Yo sabía los temas más complejos del curso pero las partes simples eran mi Waterloo, y él me pregunta sobre esto último. Mi respuesta no fue completa y para demostrar que no tenía favoritos, me aplicó la peor nota que tuve como estudiante de secundaria. Al paso de los años, asentía con la cabeza cada vez que Gabriel relataba su hazaña, y agregaba como colofón, mi estrepitosa caída. Por supuesto que no decía, que finalmente obtuve la mejor nota del curso y fui segundo en el cuadro de honor. Pero era su anécdota, no la mía.

Podría contar muchas anécdotas de nuestro paso por la secundaria, en las que mi compadre Gabriel era el protagonista principal, pero solo mencionaré que solía hacernos bromas  pesadas ya que a veces terminábamos en medio de la pista, junto a la rueda de un ómnibus o magullados por un arbusto. Estas palomilladas como Gabriel los llamaba, no nos causaban ninguna gracia, pero al paso de los años, eran motivo de conversación y de mucha alegría. Los jóvenes cometen muchas locuras, y mi compadre no fue la excepción, más bien hizo honor al sobrenombre con  que lo llamábamos.

Gabriel estudió Ingeniería Química, y en la universidad, nos juntábamos únicamente para asistir a reuniones de amigos en común o para estudiar resistencia de materiales o cálculo diferencial. Mientras tanto la  atrofia muscular espinal seguía su curso implacable y pronto perdí la capacidad de ir a cualquier lugar en forma independiente o de incorporarme del suelo si me caía.  Cuando ya no fue posible asistir a la universidad debido al progreso de la AME, Gabriel que entonces vivía en el distrito del Rímac solía visitarme los fines de semana; y con más frecuencia, cuando ya estaba realizando sus prácticas profesionales en empresas químicas de primer orden.

Con Gabriel salía a fiestas, no importaba si éstas se celebraban en un segundo o tercer piso, él me ayudaba a subir las escaleras; y si me caía bailando, me levantaba enseguida. Me acompañaba luego a casa y me dejaba acostado, recién entonces él se marchaba a su casa. Hasta  año y medio antes de su fallecimiento, si ambos participábamos en una reunión, él iba y venía conmigo.

Cuando fui llevado de emergencia al Hospital 2 de Mayo en 1972 por una perforación de úlcera, supe entonces que quería vivir y que AME no me llevaría tan fácilmente.  Como siempre, mi compadre Gabriel fue el primero en llegar al hospital y extender su brazo para  la transfusión de sangre que tanto necesitaba.

Gabriel terminó su carrera y trabajó en una prestigiosa compañía cervecera del Perú, y  jamás se olvidó de su amigo julio. Venía a mi casa con regularidad, donde se le consideraba un miembro más de la familia.

Un hombre tan generoso como Gabriel vio su suerte cambiar a fines de los 80s; mientras que a mí, la Dra. Liliana Mayo, Directora del Centro Ann Sullivan, me daba la oportunidad de mi vida en 1987. Gracias a ese giro del destino, pude ver por mi madre hasta el final de sus días, como se lo había prometido cuando niño, y enfrenté a AME con mejores estrategias, y mayor resolución.

Mi madre Julia sufre una caída en 1994 y se fractura tibia, peroné, y cadera. El Dr. Maceda la opera de emergencia, y una campaña internacional puesta en marcha por la Dra. Mayo y la Dra. Leblanc, a la que se suman amigos míos en Inglaterra, Suiza, España y Venezuela salvan su vida.  10 días después de la intervención quirúrgica, mi madre Julia presenta un cuadro severo de retención de orina y problemas cardíacos. Solo en casa, atiné a llamar a Gabriel y al médico que la había operado, quien me sugiere buscar a un médico que tratase la retención de orina mientras él ubicaba al cardiólogo para que la atendiese de emergencia. Era ya de madrugada cuando el peligro se conjuró por completo. Mi madre Julia superó los problemas de su intervención quirúrgica, y con la terapia apropiada, se puso de pie y caminó nuevamente con apoyo por ese piso lleno de huecos de nuestro vecindario, que no era apropiado para su edad (82 años) ni para su discapacidad adquirida.  Ella vivió cuatro años más y mi compadre Gabriel estuvo a nuestro lado hasta  su final en 1998.

Yo mismo me fracturé tibia y peroné en1995 y pasé tres meses con la pierna izquierda enyesada, que por su peso y mi atrofia imposibilitaba que estuviese en posición vertical.  Aun así no falté al trabajo. En 1996, tuve perforación de vesícula, y una piedra (cálculo) enorme que debiendo bajar por los intestinos subió extrañamente hasta el píloro donde se atascó.  Los doctores creían que tenía cáncer.

Recuerdo esa noche, estaba mal en casa, y ya que me habían rechazado varias veces en la emergencia del Hospital Almenara, pedí a Gabriel que me llevara al Hospital Rebagliati, donde gestionamos mí hospitalización, aun cuando no me correspondía ese hospital general. No me aceptaron pero me enviaron al Almenara  en una ambulancia con documentación que solicitaba mí internamiento. Toda esa madrugada, Gabriel estuvo corriendo de un lado para otro para hacerme los análisis correspondientes a fin de poder hospitalizarme. 60 días después, la vida se salvó de milagro porque las posibilidades de salir vivo estaban ya en mi contra.

Igual fue en 1999, cuando mi madre Julia había ya fallecido, superé una vez un nuevo problema del conducto biliar gracias a la extraordinaria pericia del Dr. Rae y de su equipo médico. En esta oportunidad como en la anterior, gracias a Dios y al apoyo de mis hermanos Miguel, César y Rosa y del amigo Gabriel, la vida prevaleció sobre la muerte.

En este nuevo siglo, tuve que luchar por un lote de terreno que por justicia me correspondía en el barrio donde había nacido. Cuando mi madre Julia vivía,  teníamos derecho a un lote de 50 metros cuadrados.  A su  muerte, el derecho se esfumó, y tuve que luchar contra esa injusticia. A Dios gracias, la razón se impuso y construí la casa que había prometido a mi madre. Como siempre, recurrí al amigo incondicional para llevarlo a cabo ya que mi cuerpo debilitado no me permitía encargarme de la obra por mí mismo. Tomó tiempo hacerlo, pero quien no conoce de imposibles sino de persistencia y lucha sin descanso, el sueño de la casa propia se hizo realidad.

Basta dar una mirada a mi pequeña habitación o a la casa en su conjunto para reconocer no solo el esfuerzo de un hombre que no se rinde ante la adversidad, sino también la ayuda incomparable y la contribución de un gran amigo en su realización.

Ni remotamente pensé que iba a sobrevivir a mi compadre Gabriel, que salvo su diabetes controlada de los últimos años, había gozado siempre de buena salud. Por esa razón, cuando Gabriel me visitó el 9 de enero de 2012 y dijo que tenía cáncer al colon, en etapa cuatro, y que no sabía si podría sobrevivir a la enfermedad”, la noticia me impactó tremendamente. Supe en mi corazón que mi compadre se iba ir antes que yo, ya que el cáncer al colon se había propagado al hígado, y no había mucho que hacer.

Días después, yo mismo me enfrentaba a otro gran problema. De un día para otro, estaba perdiendo la visión del ojo derecho, y fue necesario operarme de urgencia debido al desprendimiento de retina que había tenido. CASP, donde laboro, la ayuda de amigos estadounidenses, y la pericia del Dr. Wong fueron instrumentos de Dios en la recuperación de la visión perdida.

Tan pronto me sentí mejor, llamé a mi compadre Gabriel porque era mi misión ayudarle en la transición hacia el viaje sin retorno. Cada fin de semana lo llamaba y conversábamos un largo rato de todas nuestras vivencias escolares; y a medida que él se debilitaba, me consultaba sobre la manera de evitar las escaras que se podían desarrollar por estar mucho tiempo sentado. Así le recomendaba cojines de agua o de gel, botellas para orinar y otras tantas cosas que mi experiencia con la atrofia muscular espinal dictaba. Él seguía todas las indicaciones que le daba, y entendía en carne propia toda la devastación muscular que AME había causado en mi a través de los años. Comprendía más al compadre que ya no podía ir a su ritmo cuando tenía 30 o  a los 40 años.

En diciembre de 2012, mi compadre Gabriel vino a despedirse de mí, sabía que no le quedaba mucho tiempo y me pidió que hiciera el esfuerzo de visitarlo porque él ya no podía hacerlo. Lo llamaba más seguido por teléfono, y pude visitarlo el 30 de enero de 2013 cuando mis vacaciones terminaban. Mi compadre fiel a su costumbre, me dijo “una cerveza compadre porque usted no viene por las puras”. Lo vi muy debilitado, apenas se podía mover en su silla, y su abdomen abultado parecía al de una mujer en gestación.

Estaba muy hinchado y aun así se tomó tres cervezas conmigo y mi asistente Domingo. Pidió dos más porque así era mi compadre, pero ya no pudo tomar. Si comió con gusto el pan con jamón que tanto le gustaba. Antes de marcharme con la promesa de volver, seriamente me dijo: Compadre Julio, ¿cree usted que llegaré a mi santo (26 de marzo), usted sabe? Yo no podía mentirle porque nunca lo había hecho, pero tampoco podía decirle lo que pensaba, sólo atiné a decirle, compadre Gabriel, los días que le queden pocos o muchos, páselo con sus seres queridos, mi ahijada Rosa Ángela, su papá Gabriel, y su hermana Leonor. Al día siguiente,  Leonor me llama y me pregunta cómo lo encontré. Le conté que Gabriel  me preguntó si llegaba a su cumpleaños. Ella también lo hizo, y en verdad, aunque su cumpleaños estaba a casi dos meses de distancia, y eso era imposible, no imaginé o no quise aceptar que su final era cuestión de días. La verdad era que mi compadre me estaba esperando para emprender su viaje final.

El 3 de febrero, Jorge Mandujano, un amigo del barrio y ex alumno de la Gran Unidad Escolar Hipólito Unanue, donde estudiábamos, vino a mi casa  como a las 7pm a darme la noticia: “Julio, se nos fue Gabriel. Voy a iniciar los trámites del sepelio ahora mismo”. Gabriel era tan organizado que había pedido a nuestro amigo Jorge encargarse de todos los trámites de su fallecimiento, pagando todos los gastos con anticipación. Así era mi compadre, previsor, sincero, leal, honesto, gran bailarín (campeón en 200 millas a la redonda como solía decir) y defensor a ultranza de los débiles frente a las injusticias.

Varios meses han transcurrido desde su fallecimiento, y aun cuando mi vida cambia por el progreso de la atrofia muscular espinal, me adapto y sigo en tenaz lucha. Y eso es posible porque tuve la suerte de encontrar en mi camino a personas con un corazón grande y solidario como mi compadre, amigo y hermano, Gabriel Muro Rodríguez.

No te digo adiós compadre, porque sé que un día nos veremos nuevamente. Hasta ese entonces Gabriel, nos vemos.

Tu compadre Julio.

Erquinio, Gabriel Muro, and Moran
Erquinio, Gabriel Muro, and Moran

Gabriel Muro Rodríguez lives on in the hearts of those who loved him

Gabriel Muro Rodríguez 1949 - 2013
Gabriel Muro Rodríguez
1949 – 2013

Not long ago, in March of this year, I turned 64 years old, and what should have been a celebration of the miracle of reaching this age with a progressive neuromuscular condition called spinal muscular atrophy became instead a dichotomy between sadness and happiness. On the one hand, I felt the physical absence of my friend Gabriel, who died of cancer in February of this year. On the other hand, my friend Charly Castillo told some stories that made me laugh to death. The pleasant sentiment passed to me by my group of friends was evident, as well as the kindness of Daniel, who sacrificed his hours of sleep to be able to help me when the visit was over. And this whole feeling of happiness and camaraderie embodied in its own way my compadre Gabriel.

It was April 2, 1962. I had attended my first day of morning period class at the Hipólito Unanue High School, and I had to return to classes from 3 to 6 pm. That evening, my mother Julia accompanied me to the tram stop to take the tramcar that would take me to school about two kilometers away when we passed by the residential complex “16 de Julio.” Gabriel was talking with a group of kids our age (12 or 13) when I made out from the insignia he wore that we were from the same school. That single walk with my mother would transform over the years into one big story. According to Gabriel, who was smoking with his friends at the time (an adult activity not done by kids in those days), I was holding my mother’s hand when I passed by him (something done by sheltered kids in those days). It was not true, but year after year, Gabriel enriched this story when he talked about the beginning of our great friendship with friends of different circles. If Gabriel was still alive, he would say my mother carried me by the hand until my fifth year of secondary school. Such was his imagination, and he was a believer in his own version of events.

Julio Chojeda Torres, Gabriel Muro Rodríguez, Percy Rojas
Julio Chojeda Torres, Gabriel Muro Rodríguez, Percy Rojas

I was studying my first year of secondary school while he was in his second year. Gabriel had some friends who were two or three years older than us who studied with me in the first year and who knew Gabriel because he was always being punished with them after class for bad behavior. One day, they had told him to hit me on the way out of school. I had not been helping them during the exams, so I needed a lesson. I was short in stature, but I had experience on the street and many fights from primary school on my belt. By this time I was already falling because of SMA, but I accepted the fight on the way out of school, because this was the proper thing to do back then. Gabriel looked at Flores Velasco and Ramírez face to face, as well as another kid whose name I don’t recall, and said, “I will not fight. He is from my neighborhood.” Over the years, this is how my story went, and half joking half serious, I would say Gabriel was the first hired “thug” of the time. In 1963, when I was playing at recess at 10 am, these “three friends from 2F” fought with me. I defended myself as best I could, but their strength in numbers prevailed. I promised to beat the daylights out of them when I was older, but their bad marks caused them to be sent to another school. And I began to lose strength rapidly.

In 1964, when I passed to my third year and found myself with Gabriel, who was repeating the year, in Third A, we were already friends. He sat on the last row, while I sat on the first. That morning, we made the first negotiation of the many we would make in our lives. We compromised and chose the middle row.

One of those days in 1965, when the students decided not to go to classes in order to go see a James Bond premiere or just to wander around, Gabriel told me, “Shorty, when I get married and have a son whom I will call Gabriel Alonso, you will be my compadre” (that is to say, the godfather of his son). “Yeah, whatever,” I responded. Many years later, the son he imagined as a kid was not born. He instead had Rosángela, and even after many of his friends requested the honor of godfather, Gabriel kept his word. In this way, he became my compadre! A man of his word.

Group studentsHUHe was at the point of failing the year in 1965, because he took three courses during the break (called vacationals), among them biology, a course taken by fourth-year students. Flores Pezo, the extraordinary teacher of the course, always said, “Whoever does not pass the course in nine months will not pass it in the vacational.” Gabriel was the exception. His future compadre, the best student in the course, prepared him day and night, and he passed not only this course, but also the other two and graduated to fifth year with the rest of our friends. An achievement that made him proud and that he remembered his whole life.

Another story he always told over the years was about an oral exam Professor Flores Pezo gave the students in Fourth A. Then, everyone without exception was being failed by the professor, who had no better idea other than to call on me for an oral exam. I knew the most complex subjects of the course, but the simple parts were my Waterloo, and it was these parts he asked me about. My answer was not complete, and to show that he had no favorites, he gave me the worst grade I received as a secondary school student. Through the years, I nodded every time Gabriel told the story of how he passed and to top it off, how I failed that oral exam. Of course, he didn’t mention that I ultimately received the best grade in the course and was second on the honor roll. But it was his story, not mine.

I could tell many more stories of our time in secondary school, in which my compadre Gabriel was the main protagonist, but I will only mention that we would always play practical jokes on one another and sometimes end up in the middle of the road head-to-head with the wheel of a bus or injured in some bushes. These child’s games, or palomilladas as Gabriel called them, were no cause for laughter at the time, but through the years, they were the source of conversation and much happiness. Young people do a lot of crazy things, and my compadre was no exception. He lived up to the nickname Loco Muro we used for him.

Gabriel studied chemical engineering, and at university, we would get together only to attend gatherings with friends we had in common and to study strength of materials or differential calculus. All the while, my spinal muscular atrophy continued its relentless course, and soon I lost the ability to go anywhere independently or to get up off the ground when I fell. When it was no longer possible for me to attend university due to the progress of SMA, Gabriel, who lived at that time in the district of Rimac, would visit me on weekends. And he would visit more when he began working professionally for first-class chemical companies.

I attended parties with Gabriel. It did not matter if these were on the second or third floor. He would help me climb the stairs, and if I fell while dancing, he would immediately pick me up. He would accompany me home and lay me down, and then he would go back to his house. Until a year and a half before his death, if we both went out somewhere, he would go there and come back with me.

When I was carried to the Hospital 2 de Mayo, in 1972, due to a perforation from an ulcer, I decided then that I wanted to live and that SMA was not going to take me so easily. As always, my compadre Gabriel was the first to arrive at the hospital and extend his arm for the blood transfusion I really needed.

Gabriel finished his degree and worked for a prestigious brewing company in Peru, and he never forgot about his friend Julio. He regularly came to my house, where he was considered another member of the family.

A man as generous as Gabriel saw his luck change at the end of the 80s when middle-aged people were hardly ever being hired, while I was given the opportunity of my life by Dr. Liliana Mayo, Director of the Ann Sullivan Center, in 1987. Thanks to this spin of fate, I was able to see after my mother to the end of her days as I had promised her when I was a child, and I confronted SMA with better strategies and greater resolution.

My mother suffered a fall in 1994 and fractured her tibia, fibula and hip. Dr. Maceda performed an emergency operation on her, and her life was saved by an international campaign begun by Dr. Mayo and Dr. Leblanc, as well as friends of mine from England, Switzerland, Spain and Venezuela. Ten days after the surgical intervention, my mother Julia had a severe case of urinary retention and cardiac problems. Alone at home, I managed to call Gabriel and the doctor who had operated on her, who suggested I look for a doctor to treat the urinary retention while he looked for a cardiologist to give her emergency treatment. It was already morning when the danger disappeared completely. My mother Julia overcame the problems from her surgical intervention, and with the appropriate therapy, she stood and walked again with assistance across the ground full of holes in our neighborhood, which was not appropriate for her age (82) or her acquired disability. She lived four more years, and my friend Gabriel was at our side until her last days in 1998.

I also fractured my tibia and fibula in 1995 and spent three months with my left leg in a cast, which because of its weight and my atrophy made it impossible to stand. Even so, I did not stop working. In 1996, I had a bladder perforation and an enormous stone that should have gone down the intestines, but it went strangely into the pylorus, where it stuck. The doctors thought I had cancer.

I remember that night. I was at home feeling sick, and since I had been refused several times at the Hospital Almenara emergency room, I asked Gabriel to take me to Hospital Rebagliati, where we began to arrange my hospitalization, even though as a patient I did not belong to this general hospital. They did not accept me, but they sent me back to Almenara in an ambulance with documentation requesting my admission. Gabriel ran back and forth until dawn to do the analyses for me to be able to be hospitalized. Sixty days later, my life was saved miraculously, because the odds of me leaving alive had been against me.

Something similar happened in 1999, when my mother Julia had already died. I again overcame another problem with my bile duct thanks to the extraordinary expertise of Dr. Rae and his medical team. At that time, as before, thanks to God and the support of my siblings Miguel, César and Rosa and my friend Gabriel, life prevailed over death.

In this new century, I had to fight for a plot of land that belonged to me by law in the neighborhood where I was born. When my mother Julia was living, we had the right to a plot of 50 square meters. At her death, the right diminished, and I had to fight against this injustice. Thanks to God, reason prevailed, and I built the house I had promised my mother. As always, my unconditional friend came through to bring it to completion since my weakened body would not permit me to oversee the work myself. It took time, but for me who knew no impossibilities but rather persistence and relentless battling, the dream of having my own house became a reality.

A glance at my small room or the rest of the house is enough to recognize not only the strength of a man who did not surrender in the face of adversity, but also the incomparable help and the contribution of a great friend in the process of its completion.

I never remotely thought I would outlive my compadre Gabriel, who except for his controlled diabetes in the last few years, had always enjoyed good health. For this reason, when Gabriel visited me on January 9, 2012, and said he had stage four colon cancer and that he did not know if he could survive the illness, the news hit me hard. I knew in my heart that my compadre was going to go before me, since the colon cancer had spread to the liver and there was not much left to do.

Days later, I confronted another big problem. From one day to the next, I was losing the vision in my right eye, and it was necessary for me to have an emergency operation due to a retina detachment I had. CASP, where I work, the help of American friends and the expertise of Dr. Wong were God’s instruments in the recuperation of my lost vision.

As soon as I felt better, I called my compadre Gabriel, because it was my mission to help him on his way toward his final departure. I called him every weekend, and we would talk for a long time about all our school experiences. And as he became weaker, he consulted me on how to avoid bedsores that could develop by being seated a long time. So I recommended him water and gel cushions, urinal bottles and other such things that my experience with spinal muscular atrophy had taught me. He followed all the instructions I gave him, and he experienced in the flesh the muscular destruction that SMA had caused in me through the years. He more understood the compadre who could not go at his speed when I was 30 or 40 years old.

In December 2012, my compadre Gabriel came to tell me goodbye. He knew he did not have much time and asked me if I would make the effort to visit him, because he would not be able to come to me. I called him regularly on the phone, and I was able to visit him on January 30, 2013, when the holiday break was over. My compadre, faithful to his custom, said to me, “A beer, compadre, because you did not come here for nothing.” I saw him very weakened. He could barely move in his chair, and his swollen abdomen looked like that of a pregnant woman.

He was very swollen, but even so, he drank three beers with me and my assistant Domingo. He asked for two more for us, because that was the way my compadre was. He could no longer drink, but he did gladly eat the ham sandwich prepared by Domingo that he liked so much. Before I left promising to return, he said to me seriously, “Compadre Julio, do you think I will be alive for my birthday, you know, March 26?” I could not lie to him, because I had never done so, but neither could I tell him what I thought. I only managed to say to him, “Compadre Gabriel, the days you have left, whether few or many, spend them with your loved ones, my goddaughter Rosángela, your father Gabriel and your sister Leonor.” The next day, Leonor called me and asked me how my visit went. I told her Gabriel asked me if he would be alive by his birthday. She asked me the same thing, and although really his birthday was almost two months away and would be impossible for him to reach, I could not imagine and refused to accept that his end was a matter of days. The truth was my compadre had been waiting for his best friend to visit him to begin his final journey.

On February 3, Jorge Mandujano, a friend from the neighborhood and a former student at the Hipólito Unanue High School, where we studied, came to my house around 7 pm to give me the news: “Julio, Gabriel has left us. I am going to begin the burial process right away.” Gabriel was so organized that he had asked our friend Jorge to be in charge of the process at his passing and paid all the expenses beforehand. Such was my compadre: foresighted, sincere, loyal, honest, good at dancing (the best within 200 miles, he always said), and staunch defender of the weak in the face of injustices.

Several months have passed since his death, and even as my life changes from the progress of spinal muscular atrophy, I am adapting and continuing the tenacious fight. And this is possible because I had the luck of finding along my way people with a big and supportive heart like my compadre, friend and brother, Gabriel Muro Rodríguez.

I am not telling you goodbye, compadre, because I know one day we will see each other again. Until then, Gabriel, see you later.

Your compadre,

Erquinio, Gabriel Muro, and Moran
Erquinio, Gabriel Muro, Julio, Moran

Translation by Matt Watson, Julio’s friend also with SMA

Time off for a person with SMA in Peru


*The great majority of people with severe disabilities are not employed and do not receive any financial assistance from the government.

The presentation of staff awards at the Ann Sullivan Center of Peru (CASP) for 2012 had come to an end, and while the staff left in a bus contracted by CASP, I stayed at Dr. Mayo’s house in La Punta, waiting for a taxi to come pick me up.

The summer vacation had begun that twenty-second of December for most of the staff, with the exception of some members of Administration and Maintenance. For me, a true challenge was underway. On returning home and contemplating the Administrative Efficiency Prize I had been awarded that evening, I asked myself who was going to take care of me during the vacation period from December 24 to January 31 of the following year. I have had spinal muscular atrophy since I was a boy, I live at home alone, and so my anxiety was valid.

Hiring caretakers from a specialized agency was not within my means financially, and as I saw it, I had no other option other than ask for additional help from Daniel and Domingo, the people who care for me for hours at a time and who also deserve recuperating rest from the exhausting work of assisting me.

My hands were very tired and weak due to the progress of my neuromuscular condition and the work I have done on the computer throughout the years. It was necessary to rest them with the hope of recuperating some of the lost strength, but as usual, I had two translations to do for staff training, due by my return to work on February 1. No doubt, other urgent jobs from our director, Dr. Mayo, would be arriving by email to be done immediately. The whole job entrusted to me was a challenge, because my right index finger, the only finger I write with, did not have any more strength left to push the keys. The moment also constituted an opportunity to test work strategies for when I can no longer type. My mind knew what to do, but the physical help from others was indispensable to be able to carry out my daily routine.

When our primary assistants are no longer in a condition to support us because of their advanced age or chronic illness, our life depends on human beings who help us do the things we cannot do on our own. That is, getting up, bathing, combing hair, getting dressed, going from the bed to the wheelchair, leaving the house, going to bed, etc. And if I have arrived at the age of 63 with SMA, it is because people with great sensitivity came into my life to accompany me on the difficult stretches of my long journey through life. And this last vacation was no exception.

Foto0538Daniel: A 20-year old young man, who has supported me since May 2011, without even thinking it over said to me that I could count on him. These comments show the kind of person he is. Since the first day of vacation, Daniel typed what I dictated to him in Spanish from the English texts I had to translate. Before that, he would stand me up against the wall by propping a chair against my chest to keep me from falling — a miracle, because in theory, it is impossible for me to stand. In this way, my hands rested, pressure sores were avoided, and life was prolonged. When I could no longer support the weight of my body, Daniel would sit me on the bed, and I would correct the text I had dictated. Neither disability nor age differences are obstacles to forming a good friendship if people focus more on the human being than on limitation. Thanks, Daniel!

When we live in a world of four walls for most of our existence, we only observe the real world through a window, through television, like observers of a movie. However, there are human beings who bring a little bit of that world to us, and their visit comforts us. And just as if no difference existed, we interact with each other freely.

Foto0497Jessica: Training area assistant at CASP. She had announced her visit on December 28, the equivalent to April Fool’s Day in Peru, but it was no joke. And I was not surprised either, because the year before, right at Christmas, as the world was celebrating the birth of the Child Jesus, she had the generosity to remember her friend who was confronting hard conditions in life by calling him on the telephone to convey her great optimism and vitality. Without forgetting she had put drops in my right eye after my surgical operations and complied with my other requests for help, that day at home, she listened attentively as I told her about my fight against adversity through the years, about my mother Julia, about my projects, and about the help I needed from her for 2013. She had lunch with me, and the hours she spent with me were pleasant and greatly appreciated. A week later, her first contribution for the year arrived in the mail. Thanks, Jessica, for being like you are. May God always guide your steps wherever life takes you.

Domingo: At the end of the year, this friend let me know that he would give me his support from January 1 through the rest of the month. He would come in the morning and Daniel at night. However, a health problem prevented him from helping me, and Daniel had to help me more in the day. Nonetheless, he was the one who carried me in my wheelchair to downtown Lima or to shop in the supermarkets of the capital city. His contribution was greatly appreciated.

Matt: A teacher at Mississippi State University who is also affected by spinal muscular atrophy, as well as his brother Blake. He has become a friend through cyberspace as well as tech adviser along with Blake. I consult them a lot on keyboards, on how to type with one hand either through an iPhone or an iPad. Together with their mom Clarissa, they supported me during my retina operation, and not losing my vision is something I will thank them for, as well as the other special people who intervened, for the rest of my life. The beginning of the New Year 2013 found me speaking with Matt through Skype about my projects, tasks to do and the way he could help me with them. He happily agreed! The friendship of all of these was a gift from God. Thanks, Matt, from the heart.

Roberto: The friend who came to put me to bed a little after 12 am on January 1, when I was speaking with Matt. The occasion gave rise to a long conversation between Roberto and I that lasted until 5 am. No one knows how God will answer our prayers until the opportunity presents itself. My friend was leaving on a trip back home in January, and so I was without his help on the weekends. However, God had another alternative for me.

Foto0518Denisse: My friend from CASP, the kind of person God sends to make our lives easier, made her first visit of the New Year. We have known each other since 1987. And since then, she has visited me many times in my life — when my mother Julia was still alive, when she passed away and Denisse made a small economic contribution I will never forget, when I stayed at my sister Rosa’s house for ten years, when I returned to my neighborhood for the final fight. And after her last visit, she had the generosity to comment to other friends on the way to imitate her actions: “Our friend Julio — it is always an inspiration to see him and talk with him, and above all, the good it does him to receive visits you wouldn’t know. You will leave super recharged.” In short, a friend like none other.

My friend Roberto had already left on his trip with his family, and I had not found anyone to help me go to bed on Fridays and Saturdays or to get me up on Sundays and go to bed on Sunday nights. I ran the risk of having to spend all night in a seated position. But not so.

Foto0543Javier: Roberto’s nephew came to my house on January 10, and he immediately made himself available to help me on weekends. Daniel, who has become a teacher by experience, taught him how to sit me on the bed, lay my body flat, take off my clothes and use his arm to situate me on the pillow where I lay on my side to prevent sores. This intensive course made him see how my body falls over in the bed and how severe my condition is. Far from being scared off, he put more attention and care into managing me. Through his sensitivity, and initiative, he gets me up early in the morning before going to work and sits me in my chair, and I wait for Daniel in a comfortable position. Thank God!

Foto0556Emails between Lima and Kansas intensified, and new tasks arrived from CASP. It seemed that I was at work like normal, but no, I was at home. Thank God Matt was only one click away. After some coordination, some jobs were sent to him, while I did the urgent and short-term translations. Thanks to this, tasks from Autism Speak, International Ponseti Association, USAID, Panama and other translations on leadership and problem-based learning were completed.

Sunday, January 27: From Kansas, Dr. Liliana Mayo responded to me, “Julio, you are an angel. The completed tasks have arrived just in time because we (American consultants and I) are going to meet together in a half hour…thanks a lot.”

The objective was complete! I had not had the rest I needed, but working for people with different abilities and the professionals who work with them comforts the soul and makes us feel like our goal in life is being fulfilled. Thanks, Matt, for helping me make it possible.

Personally, when the benefits of people with disabilities only exist on paper, you have to appeal to the world when necessary to keep working and living. And the world responds to just causes:

Brenna C.Randal, one of the members of the Kansas group who visited me last year, wrote to me “I have talked with Enriquez (from Dragon Naturally Speaking) about the Dragon Speak program–weighing/balancing the pros and cons of the beginning and more sophisticated software.  I hope that what we chose will support you in your translations.  Have a desk top microphone to accompany”

Jeff Seitz, who donated me an electric chair in 2004, told me, “Julio, I am going to get to work on sending the chair to you.  I will fill out the forms and stay in communication with you.  My first step will be to get the shipping arrangements made and then send it on its voyage.”

From Matt: “We have purchased the iPad Mini for you and will get it to you ASAP. This should offer you a variety of ways to type that will make your job easier and faster. As someone who has similar loss of hand strength, I cannot imagine how you use a traditional keyboard. I depend on alternative ways of typing that have greatly improved my productivity, and I hope this iPad will help you in this regard.”

There are still many challenges to overcome day to day, but the vacation ended up being better than imagined.

Thank you, God.

Julio Chojeda Torres

Lima, Peru


Vacaciones para un trabajador con AME en Perú


* La gran mayoría de personas con discapacidad severa no tienen empleo y no recibe ninguna ayuda económica del gobierno.

La entrega de premios al personal del Centro Ann Sullivan del Perú que sobresalió en el 2012, había llegado a su fin; y mientras el personal se retiraba en un bus contratado por CASP, yo permanecía en casa de la Dra. Mayo, en la Punta, esperando que un taxi viniera a recogerme.

Las vacaciones de verano habían empezado ese 22 de diciembre para la mayor parte del personal con excepción de algunos miembros de Administración y de Mantenimiento. Para mí, un verdadero desafío estaba a portas.  De regreso en casa, contemplando el Premio a la Eficiencia Administrativa que había obtenido esa tarde, me preguntaba quién iba a cuidar de mí en ese periodo vacacional que abarcaba desde el 24 de diciembre hasta el 31 de enero del año siguiente. Tengo atrofia muscular espinal desde que era niño, vivo solo en casa, y mi preocupación era muy válida.

Contratar cuidadores de una agencia especializada no estaba al alcance de mis medios económicos; y tal como lo veía, no tenía más opción que pedir un esfuerzo adicional a Daniel y Domingo, las personas que me cuidan por horas, y quienes merecían también un reparador descanso de tan agotadora labor que es atenderme.

Mis manos estaban muy agotadas y debilitadas por el progreso de mi condición neuromuscular, y el trabajo realizado a través de los años con la computadora. Era necesario darles descanso en la esperanza de recuperar algo de la fuerza perdida; pero como de costumbre, tenía dos traducciones que hacer para la capacitación del personal, y éstas debían entregarse a mi regreso en febrero 1.  Sin duda, otros trabajos urgentes de nuestra directora, la Dra. Mayo, estarían llegando por correo electrónico para hacerse al toque, es decir, rápidamente. El trabajo encomendado era todo un reto porque el índice derecho, el único dedo con el que escribo, no tenía ya fuerza para presionar las teclas. El momento constituía también una oportunidad para ensayar estrategias de trabajo para cuando ya no pudiese escribir. La mente sabía qué hacer, pero era indispensable la ayuda física de terceros para poder realizar mi rutina diaria.

Cuando nuestros asistentes primarios ya no están en condiciones de apoyarnos por edad avanzada o enfermedad crónica, la vida de uno depende de seres humanos que nos ayudan a hacer las cosas que no podemos hacer por sí mismo. Es decir, levantarse, bañarse, peinarse, vestirse, pasarse de la cama a la silla de ruedas, salir de casa, acostarse, etc. Y si he llegado a 63 años con AME, es porque personas con mucha sensibilidad llegaron a mi vida para acompañarme en un tramo de mi largo viaje de vida. Y estas vacaciones no fueron la excepción

Foto0538Daniel: Un joven de 20 años que me apoya desde mayo del 2011 me dijo sin pensarlo dos veces que podía contar con él. La respuesta esperada es muestra de la clase de persona que es. Desde el primer día de vacaciones, mientras leía en español el texto en inglés de la primera tarea, Daniel escribía el dictado en la computadora. Antes de eso, Daniel me había puesto de pie contra la pared (un milagro porque en teoría no es posible estar de pie), puesto una silla a la altura de mi pecho para apoyarme y no caer. De esa manera, mis manos descansaban, se evitaba las escaras, y la vida se prolongaba más. Cuando ya no resistía el peso de mi cuerpo, Daniel me sentaba en la cama y yo corregía el texto dictado. Ni discapacidad ni diferencia generacional son obstáculos para formar una buena amistad, cuando más que la limitación, se ve al ser humano.  Gracias Daniel!

Cuando se ha vivido en un mundo de 4 paredes la mayor parte de nuestra existencia, el mundo real sólo se ve a través de una ventana, la televisión, o como observadores de una película. Sin embargo,  hay seres humanos que nos traen un poco de ese mundo, y su visita nos reconforta, y como si no existiera diferencia alguna, interactuamos con toda libertad.

Foto0497Jessica: Asistente del área de capacitación del CASP había anunciado su visita para el día de inocentes en Perú (28 de diciembre). Y no fue una broma, sino una realidad. Y no me sorprendió, porque el año anterior, en plena navidad, cuando el mundo celebraba el nacimiento del niño Jesús, tuvo la generosidad de acordarse del compañero que enfrentaba duras condiciones de vida, y transmitirle a través del hilo telefónico mucho de su optimismo y vitalidad. Sin olvidar que durante el año me había apoyado con las gotas oftálmicas después de mis intervenciones quirúrgicas, y otras solicitudes de ayuda. Ese día, en casa, escuchaba con atención sobre mi lucha contra la adversidad a través de los años, de mi madre Julia y de mis proyectos, y de la ayuda que necesitaba de ella en el 2013. Me acompañó en el almuerzo, y las horas que me dispensó fueron gratas y grandemente apreciadas. Una semana después, el correo traía su primera colaboración del presente año. Gracias Jessica por ser como eres. Que Dios guie siempre tus pasos por dondequiera la vida te lleve.

Domingo: A finales del año, el amigo me hizo saber de su apoyo a partir del 1 de enero y por todo ese mes. Daniel vendría en la noche y él por las mañanas. Sin embargo, un problema de salud recortó su apoyo, y Daniel tuvo que apoyarme más en el día. No obstante, él fue quien me llevó en mi silla de ruedas al centro de Lima o a comprar en los  supermercados de la ciudad capital. Su colaboración fue grandemente apreciada.

Matt: Profesor de la Universidad Estatal del Mississipi, quien está también afectado por la Atrofía Muscular Espinal, al igual que su hermano Blake, se ha convertido en el amigo del mundo cibernético, el asesor técnico con Blake a quienes consulto muchas veces sobre teclados, cómo escribir con una mano ya sea usando un Iphone o un Ipad.  Junto con su mamá Clarissa ellos me apoyaron durante mi operación de la retina, y no perder la visión es algo que les agradeceré toda la vida, al igual que a otros seres especiales que intervinieron. El  nuevo año 2013 me encontró hablando con Matt por Skype acerca de mis proyectos,  las tareas por hacer, y la forma en qué podía ayudarme con ellas. Éll aceptó con gusto!  La amistad de todos ellos fue un regalo de Dios. Gracias Matt de corazón

Roberto: El amigo llegó para acostarme ese 1 de enero un poco más de las 12, cuando hablaba con Matt. La ocasión dio lugar a una larga conversación que se prolongó hasta las 5 am. Uno no sabe cómo Dios contestará nuestras oraciones hasta que la oportunidad se presenta. El amigo se iba de viaje a su pueblo durante enero, y me quedaba sin su apoyo durante los fines de semana. Sin embargo, Dios tenía otra alternativa para mí.

Foto0518Denisse: Mi amiga del CASP, el tipo de persona que Dios envía para facilitar nuestra vida, realizaba su primera visita en el nuevo año. Nos conocemos desde 1987. Y desde entonces, me ha visitado en muchos momentos de mi vida. Cuando mi madre Julia aún vivía, cuando falleció y tuvo un gesto que nunca olvidaré, cuando estuve en casa de mi hermana Rosa por 10 años, cuando regresé a mi barrio para dar la lucha final. Y después de su última visita, tuvo la generosidad de comentar a otros compañeros a manera de imitar su acción: “Nuestro amigo Julio, siempre es una inspiración verlo y conversar con él, y sobre todo, lo bien que le hace a él recibir visitas, no saben, uno sale super recargado”. En suma, una amiga como ninguna otra.

El amigo Roberto se había ido ya de viaje con su familia, y no había encontrado a la persona que me ayudaría a acostar el viernes, sábado; levantar el domingo, y acostarme en la noche de ese día, y corría el riesgo de amanecer sentado. Pero no fue así.

Foto0543Javier: El sobrino del Sr. Roberto se presenta en mi casa el 10 de enero, y se pone de inmediato a mis órdenes para apoyarme los fines de semana. Daniel, un instructor ya por su experiencia, le enseña a sentarme en la cama, extender mi cuerpo allí, sacarme la ropa, empujar mi cuerpo con la fuerza de su brazo hacia una almohada donde iba a quedar de costado para evitar las escaras. El curso intensivo le hizo ver cómo mi cuerpo se desplomaba en la cama, y entender la severidad de mi condición. Lejos de amilanarse, puso más atención y cuidado para manejarme. Su sensibilidad, e iniciativa, hace que antes de irse al trabajo, me levante temprano en la mañana, me siente en la silla y espere a Daniel en una posición más acorde para mí. Gracias, Dios mío!

Foto0556Los correos entre Lima y Kansas se intensificaron, incluso venían desde el CASP con otras tareas. Parecía que estaba allí en día normal de trabajo, pero no, estaba en casa. A Dios gracias, Matt estaba a un solo clic de distancia. Previa coordinación, algunos trabajos fueron hacia él, mientras yo hacía las traducciones urgentes y las de mediano plazo. Y gracias a ello,  tareas de Autism Speak, International Ponseti Association, USAID, Panamá y otras traducciones sobre liderazgo, aprendizaje basado en problemas se iban entregando.

Domingo 27 de enero: Desde Kansas, la Dra. Liliana Mayo me contestaba: “Julito eres un ángel, nos llega en el momento que nos vamos a reunir dentro de media hora… mil mil gracias”.

¡El objetivo había sido cumplido! No había tenido el descanso debido, pero trabajar a favor de las personas con habilidades diferentes y de los profesionales que trabajan con ellos reconforta el espíritu, y hace sentir que nuestro objetivo de vida se está cumpliendo. Gracias Matt por ayudarme a hacerlo posible.

En lo personal, cuando los beneficios para las personas con discapacidad sólo existen en el papel, hay que apelar al mundo si es necesario para seguir trabajando, y seguir viviendo. Y el mundo responde a causas justas. Así:

Brenna C.Randal del grupo de Kansas que visitó mi casa decía: “I have talked with Enriquez about the Dragon Speak program–weighing/balancing the pros and cons of the beginning and more sophisticated software.  I hope that what we chose will support you in your translations.  Have a desk top microphone to accompany” {He conversado con Enriquez sobre el programa Dragon Speak, y sopesando los pro y los contras del software más sofisticado, espero que lo que escogimos te apoye en tus traducciones. Un micrófono de mesa irá con el programa}.

Jeff Seitz quien me donó una silla eléctrica en 2004 me decía: “Julio, I am going to get to work on sending the chair to you.  I will fill out the forms and stay in communication with you.  My first step will be to get the shipping arrangements made and then send it on its voyage” {Julio, voy a ponerme a trabajar en el envio de la silla a ti. Llenaré los formatos y estaré en contacto  contigo. Mi primer paso será hacer los arreglos de embarque y luego mandarlo por vía marítima}. .

Todavía hay muchos retos por superar en el día a día, pero él de vacaciones salió mejor de lo imaginado.

Gracias Dios Mío

Julio Chojeda Torres



Quest Magazine: Dysfunction of Motor Circuits May Underlie SMA

Animal studies suggest that spinal muscular atrophy may result primarily from motor circuit dysfunction, not motor neuron or muscle cell dysfunction, as is commonly thought

Results from a study in fruit flies conducted by scientists in the Motor Neuron Center at Columbia University Medical Center in New York suggest that spinal muscular atrophy (SMA) — commonly thought to be a disease of muscle-controlling nerve cells calledmotor neurons — instead results from the dysfunction of motor circuits (networks made up of different types of specialized neurons that coordinate muscle movement).

phase 2-3 clinical trial based on the findings is testing whether an existing drug called dalfampridine can improve walking ability and endurance in adults with type 3 SMA. (Dalfampridine is marketed under the name Ampyra for treatment of multiple sclerosis.)

In a second study, researchers identified the molecular pathway in SMA that leads to problems with motor function.

The findings could point the way to new therapeutic strategies for SMA.

Read the rest.

Click here for version in Spanish.