Proverbs 11:25: > "A generous soul will prosper; and whoever refreshes others will be refreshed."
Deuteronomy 15:10-11: > "Give generously to them and do so without a grudging heart; then because of this HaShem your God will bless you in all your work and in everything you put your hand to. There will always be needy people in the land. Therefore I command you to be open-handed toward your fellow Israelites who are poor and needy in your land."
The Blessing That Transforms: When You Share, You Receive
"Hashem is close to the brokenhearted and saves those who are crushed in spirit."
— Psalms 34:18
We all long for a blessing in our lives—a ray of light to illuminate our path, a sign from heaven to help us move forward. But the most powerful blessings do not come from wealth or power; they are born from humble hearts, from souls that have faced challenges and chosen faith over fear, love over resentment.
Our sages teach:
"Those who are insulted and do not respond, who hear their humiliation and do not reply in anger, but continue forward with love... about them it is written: ‘Those who love Hashem will shine like the sun in its full glory’.”
— Talmud, Shabbat 88b
Today, I want to share a special blessing with you. By sharing my page with as many people as possible, I will bless you in the name and by the merits of the Messiah sent to save our souls and grant us eternal life; and by the grace and mercy of Hashem, my Lord and Almighty God, Creator of all. Amen.
But remember: to receive a blessing, we must first prepare our hearts. If you empty your "self" and prepare your empty vessels, the blessing will descend from heaven and fill them. Yes, that blessing will bring you closer to Hashem, my Lord and Almighty God. It will be the most powerful blessing you have ever received.
Just as the prophet Elisha asked for empty vessels so that the oil could continue flowing without limit (2 Kings 4:1-7), so too in life: when you empty your heart with love and generosity, you open the path for blessings to enter your life.
Every act of kindness returns multiplied. When you give, you receive. When you share light, that light returns to you even stronger.
Over the past few years, due to the brain surgeries I have undergone, I have experienced a significant decline in my speech and the limited skills I had with my elbow to perform tasks on the computer.
I was born with severe cerebral palsy that affects my movements and the way I speak. Despite this, I managed to study in a Latin American country where there not were minimal conditions for a disabled person to develop and lead as "normal" a life as possible. Nevertheless, I graduated as an Industrial Engineer. Below, I'll share my complete story.
I believe that I came to this world with a severe disability (that limits my mobility and makes me totally dependent), just because of God’s purpose. I would like that everybody who knows me or reads my story understands that with the God’s Mercy in our hearts we can find the strength needed to get up and keep going to achieve a better life despite the adversities, the failures we can encounter in our way, and despite the occasional closed doors; we should always keep in mind that everything must be done with love.
Good is God
I would like to start my story thanking God for his infinite mercy, for always giving me the strength needed to continue battling in life, and for allowing me to share my life experiences with you.
I also want to thank my beloved mother Aura for always being with me, doing her best to see me happy, and doing everything she could so that I keep going through life, even with my severe disability.
Also, I want to thank my dear grandmother Mama Lubina (who is in heaven) for being with me during the first years of my life, and for taking care of me so my mother could go to work. She always said to everyone that I was her favorite grandson.
I thank my sister Gabriela, my brother-in-law, Mateo and their family, my father, my mother’s and father’s relatives, my teachers (people mentioned in this story), all my friends from my neighborhood, school, and university, known and unknown, but who at some time offered me their help and support.
Thank you very much to all of you. May God bless you and return the help and support you have given to me.
This story is dedicated to God and his infinite mercy, and to everyone who has helped me at some point in my life.
For the translation of this document to the English language, I thank my friends Marianna Chavez, Nataly Vanegas, Teacher Daniela Casanova, and Professors Robert Casals.
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Since I was born, my life has been a constant challenge and battle, which in one way or another I have been able to overcome thanks to the strength that God gives me and the unconditional love of my beloved mother, the support of my sister, family, and friends.
My name is José Rafael Ramírez Ramos. My life begins when my mother Aura Ramos became pregnant; weeks before giving birth, she went to the last medical check-up to make sure that everything was fine so she could travel from the city of San Cristóbal, (where she was living at that time) to her hometown Bailadores in the state of Merida where my grandmother Lubina and other family members lived. They were expecting me to be born on April 8, 1981, at 01:00 pm, but due to malpractice of a medical intern I was born at 04:05 pm. This 3-hour delay (in which my mother suffered a lot) caused the diagnosis of a CEREBRAL PALSY due to Prolonged Labor; this condition is damage to the part of the brain that controls muscles and motor skills.
When I was born, I did not breathe or cry. I was almost dead, the doctors tried to reanimate me for half an hour until I began to breathe, although the difficult moments, my mother and family received my birth with great joy.
Weeks later, we went back to San Cristóbal, and Mama Lubina came with us so that my mother could be back to work. I soon began to have seizures, two or more episodes per week. As a result, I constantly ended up hospitalized for a few hours in the ER. For some time, the doctors could control it with medications, and that is how I spent my whole childhood.
While I was growing up, I always wanted a sibling to play with, so when I was almost two and a half years old, my sister was born. We grew up playing and fighting like any other siblings but loving each other and always surrounded by the love of our mother, my grandmother, all our family, and the infinite blessings of God.
I started to get physical therapy for about a year, but it became complicated since we had to travel to Caracas. My mother took me once or twice a month to the San Juan de Dios Hospital until our budget allowed us. Even with the therapies, my disability started to become more visible in the movements of my arms, hands, and legs, since the dystonic movements do not allow me to have control of my own body.
Despite my disorderly movements, when I was six years old, I managed to start crawling. I was able to move around the apartment and felt a little freer. At that time, I started asking my mother when I was going to be able to walk like other children. That used to be always my question and the answer she gave me was: “May God's will be done, only he knows why”.
My experience as a student began in preschool. I started when I was seven years old, in the “Chiquilines Kindergarten”, where I met the educational psychologist, Mercedes Orozco, who helped me to develop various skills. She diagnosed me with the same IQ as any child of that age. I did two years of preschool in one. Due to my motor disability and the fact that I was not able to write, I could not continue studying in conventional schools.
When I was nine years old, one of my aunts was reading in a parenthood book called "The Mother and the Child”; the book stated that a seizure could be stopped quickly if someone splashes some water in the child's face. My mother tried this and the episodes started to decrease and occurred less often. With this very particular therapy I was able to stop taking a very strong medication (phenobarbital) to stop the seizures, thank goodness.
When I was eleven years old, my mom bought me a medical platform device about 1.5 meters long that helped me to stand and walk using my arms to support my weight, and I remember one of my best childhood memories was during the Soccer World Cup hosted in Italy in 1990. At that time, I converted our apartment hallway into my soccer field: the platform served as the goal-line and all my neighbors came frequently to play soccer with me; sometimes my sister joined us. On some occasions there were eight kids playing in a space of approximately 4 x 1.3 meters. The hallway’s walls were stained from the balls and the hands of my friends, but my mother only cared that I was happy. I also remember that around the same time I bet with my uncles and was able to buy a soccer ball with the money I got from them.
At this stage of my life, my mom enrolled me in a school, (some sort of an after-care place) that I did not like because of the constant bullying of the other children. However, my desire to learn was bigger than the fear of being bullied and I learned how to read in three months. Every day I overcame my fears. My mother carried me in her arms every morning to go on the bus because we did not have a car. But since I could not write, I could not continue studying.
I kept insisting that I wanted to walk by myself. In December 1990, someone told us about a spiritual advisor who performed healing sessions and who had made a boy (that was permanently in a wheelchair) walk. I thought that if that boy walked because of the healing sessions, I could try it too. So, in January of 1991, we met her; after each session I always asked her when I would be able to walk, and she told me that we were just starting with the sessions and that I must be patient. After going once a month, on our third visit the advisor told my mother that I was about to give her a little surprise, and one night before the day of my 10th birthday, we were watching TV and I told my mother that I was going to get up. But she was not paying attention to me: my mother asked me to please let her watch TV, and suddenly, by the grace of God I did get up and walked towards the wall in front of her. My mom got very scared and my sister, who was eight years old told me that if I was going to kill mom that I better not walk!
That moment when I started walking was the happiest moment of my life, my greatest achievement so far. Every day I went with my mother and Mama Lubina, who assisted me to walk around where we lived. I also took walks with one of my cousins who came to my home every weekends for an hour or two; he also took advantage of the visit to check out some girls he liked.
Some other times when nobody was watching me I walked leaning against the wall in the apartment; on several occasions, I fell and hit my head on the floor. I ended up in the ER getting stitches but the very next day I kept trying. I always wanted to be able to walk by myself.
We continued going with the spiritual advisor for the healing sessions and I kept improving until I was able to walk by myself. However, with my arms, I did not have too much improvement.
Around the age of 12, as I could walk better, Mama Lubina moved to my aunt’s house to help her out with her newborn baby and sometimes my mom took me there to stay with them. I did not have much space to walk there, so to feel useful, I started to wash my newborn cousin's cloth diapers. My aunt wanted to give me a little motivation and she started to pay me one Bolívar ($0.0232 at that time) for each diaper. I earned the money to buy a Nintendo video game console: I was able to play it by pressing the buttons with my leg and the arrows with the back of my wrist.
The days that I was with my mother, she took me to her office. She put me on a chair where I was able to watch how the IT guys fixing the computers, so I started to be very interested in learning about computers. After a few months of watching everything they were doing, I wanted to sit in front of the computer and try to do things. One day they taught me how to turn it on and my mom's boss told her that I could use the computer if I wanted to. I tried but it was very difficult because I was not able to control my movements. One day I tried with the mouse, I put my hand between my shoulder and my chin and tried to manipulate it with my elbow, so I began to play with a world map marking each country with the mouse and other times I played solitaire. I also tried to type some words with the keyboard.
I did my First Holy Communion walking by myself with no help at all during the whole ceremony. Thank God.
At fourteen years old, we regrouped with Mercedes Orozco and she offered me to get tutoring and therapy. I took math classes with her to see if I would be able to go back to school, but I was not able to write yet. Then we tried with a powered typewriter, and she placed a small wood plank in the row of letters, but it was still very difficult due to the involuntary movements. One time when Mercedes was busy, I told my sister to take off the wood plank because I wanted to try handling the mouse, and surprisingly, I managed to type everything by myself. From that moment, Mercedes lent me the typewriter to practice at home. She also found a computer for me to practice in her office. She did everything that was in her power to prepare me to enroll in a regular school. In five months, I was ready.
Mercedes spoke with the owners of a private school, (Mrs. Carmen de Navarrete and Mr. Armando Navarrete, who had already known me since kindergarten), and I was accepted. I took some tests, and I was enrolled in 5th grade. They were very kind and receptive to me, and they gave me a full scholarship and provided me with a computer to take my classes in the school.
Mercedes also introduced me to her brother, Dr. Diego Orozco, who donated my first computer so I could do my homework at home, (He mentored me throughout high school). I also received great support from Yovanni Ruiz who helped me to improve my computer skills.
On the first day of school the principal went to each classroom to talk to everyone about me, they warned all students about my condition to avoid any type of bullying. They also advised them that it would be a little bit difficult to understand me when I speak. As always, I had the unconditional support and help of my whole family, especially my beloved mother, my sister, and my aunts and uncles who lived nearby. It was an overall good experience, and I made many friends at school.
I worked with the WordStar software to take my class notes, including math equations (somewhat complicated); I also used the Flow software for technical drawing classes. Later, I learned how to use Windows 95 and 98 and Office suite, especially Excel and Word.
Every day at 6:30 a.m., when my mother and I got ready to go to school, there was always a friend that stopped by and gave us the ride, sometimes even some people that we did not know stopped to offer a ride.
Initially, I was accepted as a “guest student”. However, I did perform like any other student and after they evaluated me in the midterm, they transitioned me as a regular student. At the end of 5th grade, I was awarded an honor roll certificate, and at the end of 6th grade, I was awarded as the second-best student of my class. From seventh to ninth grade, I was awarded as the best student in my class.
At this time, I was gradually walking better. The school planned field trips, I did not like them that much but one of the teachers who coordinated the trips always encouraged me to go. I especially remember one field trip that was in a park within the city: the bus dropped us off at the entrance and we had to walk a long way to get to the place. All the students ran out to get to the site and I was going at my own pace as always. The coordinator did not know whether to go at my pace (in case I lost my balance) or go with the others, so another teacher volunteered to walk with me to the site. I had to focus on walking because it was raining and the road was muddy, some steps did not have rails, the teacher managed to carry her purse with one hand and an umbrella in the other. As we were walking, she was talking to me about how beautiful the park was and I had to answer her; when we finally got to the place the coordinator asked us how it was, she said everything was well, and we had been having a very nice conversation. I was excited since this road was a complete challenge for me and I managed to do it without tripping or falling. Just a reminder that in spite of a disability, some men can do three things at the same time: walk, talk and concentrate.
At the beginning of ninth grade around November 2000, we went to one of the biggest non-profit organizations in my hometown (Táchira Lottery), they had many programs to help people in need, including non-cost medical treatments, dental treatments, donations, and all types of charities. We applied to get assistance to buy a new computer since the one I had broke. That day when we were leaving the office, a person we knew approached to greet us and advised us to request a trip to Cuba through the state government aid. He mentioned that the medical treatment there was good and there were opportunities to go at no cost to be evaluated by specialists and get any procedure needed; he told us that with those procedures, they could make my life easier and we would not have to pay anything since all expenses were paid by the state. I did not like the idea very much, because leaving the country meant that I would have to put school on hold, but anyways we started the application process. After a lot of interviews, meetings, and paperwork, the application was accepted.
Before starting tenth grade, on September 22, 2001, we flew to Cuba; I remember I was able to walk by myself to my seat on the plane. We arrived in Cuba, and they took me to a hospital called “El Ciren”. They put me on medications as soon as I got there, and I did physical therapy for five days. Every day after spending the whole day in the hospital, and although the medicines made me sleepy, my mother bathed me; we had dinner and we went out for a walk until I was exhausted.
During the therapy sessions, they advised me to walk slower and I soon realized I was coordinating the walking much better in a short time, but no coordination was achieved with my arms. The doctors recommended performing a procedure called pallidotomy in the left side of my brain. The pallidotomy is a neurosurgical procedure whereby a tiny electrical probe is placed in the globus pallidus, which is then heated to 80 °C for 60 seconds, to destroy a small area of brain cells; also known as a brain lesion. They stated that in six months it would improve my condition by 80%; they mentioned that there was a high risk of dying in the operating room or worsening my speech (but they never mentioned the possibility to lose a large percentage of the control of my legs and my balance), so I decided to take the risk since they assured I could improve 80% of my condition. I had a lot of hope and faith, and I put myself in the hands of the doctors without paying attention to the signs of God.
I went under surgery on January 14th but they could not perform the procedure because even though I was under full anesthesia I was still moving my body and they were not able to place the helmet device that was going to be connected with the computer software to locate the exact place where the injury should be done in order to eliminate the dystonic movements. Once in the recovery room, the doctors told me that they were not able to do the surgery, but that they wanted to try again.
They rescheduled the surgery for January 20th, 2002, and according to them everything went well, but the surgery was traumatic. Before doing the brain lesion, they woke me up to check the involuntary movements. Doctors and nurses that were around me turned to see the monitor and watch the very moment of the brain procedure. When they did the lesion, my hips moved abruptly towards the edge of the operating table (showed in the picture above). To avoid falling, I moved to straighten my hip, and everything shuddered, including the monitors; the incident caused more damage to my brain. The doctors said to wait about six months for the brain to reduce inflammation so we could start to see the results of the surgery.
The surgery went wrong: a medical malpractice that touched other parts of the brain that should not be touched (I found out years later), affecting more my motor skills and my speech and over time causing acute pain in my right hip and leg; it still causes me a lot of pain when going up or downstairs. As time passed, it became more difficult for me to balance. Months later I could no longer walk by myself.
On February 30th, 2002, we flew back to Venezuela; the trip was very stressful for me, the noise produced by the plane caused me so much anxiety that the airport staff had to carry me to get on the plane because while I was trying to move by myself the dystonic movements became worse.
Unfortunately, although I was taking the medications and doing therapy at home, every day it became more difficult to walk, every day I had less balance and less control over my right arm and leg. This put me down; it was a very hard moment in my life.
Moving around became very difficult. My mother and I had to figure out a new way for her to support my body to walk. It was very difficult for both of us. At that time, my mom was working for an orthopedic office, and we were able to get an ankle brace to control the bending of my right ankle; it helped me with the support.
During this time, I missed several days from school due to my surgery and recovery, but despite my physical abilities and being emotionally affected, we spoke with the school owner to see if they would allow me to continue with the classes so I would not fail the school year. Thank God, they allowed me to continue with the classes. I requested each teacher a recap of the classes so I could catch up on each subject, and they all accepted my request.
I started at the end of March and all teachers gave me the summary, except for one. About two weeks later, I followed up with the teacher. His answer was a “No”; according to him, I was not going to be able to approve his subject, and I did not say anything to him. I borrowed a notebook to copy the classes, studied, and finally approved all subjects. I finished the year with 18.45 out of 20 points and was awarded the Best Student of the Year in my class. I also started going back with the spiritual advisor that made me walk when I was ten years old. But this time she told us that she would not be able to do anything after the Cuban doctors damaged what was already repaired and even more.
I continued the last year of high school and got second runner-up Best Student of the Year in my class. At that time, we started to inquire with the educational psychologist Gigi Navarrete and the teacher Aura Salas about the enrollment process in the National Experimental University of Táchira (UNET), one of the best universities in the region. There we met Professor Norma Osorio and Professor Freddy Delgado who guided for the application process for the program of Computer Engineering. We went back to the Táchira Lottery Organization to request a laptop as a donation so I could get it for my classes.
From that moment, I started to prepare myself for the application exam. I took it and ranked in number 217 out of 900 students. With that ranking, I was not accepted to enroll into the 1st semester but instead I was accepted for a required preparatory course that once I passed, I would enroll in 1st semester. The university gave me the option of sending a letter to the authorities for a special acceptance admission, but I did not want to, I would rather do things on my own, and so I did. In the course, I met many people, the UNET staff and I also made some friends. I always received a lot of support from them: the teachers facilitated the classes in writing so that I did not have to borrow notebooks from my classmates. I made two special friends who always helped me in everything and were always able to assist me.
With the good grades obtained in the course, I was confident that I was going to be accepted to enroll in the 1st semester but to be on the safe side I decided to take the application exam again. This time I ranked in 26th place out of 712 students, and I started my 1st semester in September 2004, thank God, all by myself!.
In the first semester, I did well, I met many people, I made very good friends, and the teachers supported me. Of course, not everything was a bed of roses; there were two very difficult classes for me that were very important and determined for the rest of the semesters. Since I type everything with my elbow, it took me a long time to take tests in general, so the teachers allowed me to take the exams on my laptop at one of the Admission Center Offices where they always gave me all the support from the very first day.
The Rotary International District 4380, awarded me in 2004 the Rotary Prestige Award for "An impressive example of what it means to be determined and not to be overwhelmed by the adversities of life."
In this first semester my mother and I took the school bus every day, the bus stopped at the entrance and my mother walked me to Building B (about 300 meters). It may not sound as long as it was but in my condition, it seemed much longer. Each day I came to my classroom with my shirt drenched in sweat, my mother left me in my seat and wiped a bead of sweat from me. We did the same routine the whole semester. To go back home, a friend of my sister, "Carlos", who did not have a job at that time, picked me up in his taxi.
In the second semester, my classmates began to help me to move around within the campus. When they could not help me, Carlos came to help me. We also spoke with the Director of the Transportation Program in the university to request if they could take me closer to the different buildings where I would have the classes every day. From that moment the bus drivers began to help me, they dropped me off as close as possible and we no longer had to do long walks.
I had classes in all the different buildings and I had to go upstairs. Thank God whenever my mom and I arrived there was always someone able to help us, so my mother did not have to make it by herself. On some occasions, the Rector of the university Professor Sánchez-Frank saw us arriving at a building and he helped us go upstairs. Every day, and depending on my schedule, I had to go up and downstairs and move from one building to another. This affected my right hip and leg, but I always thought that sometimes we must make some sacrifice to achieve a goal. At this point, I already knew many people who helped me whenever I needed it. This second semester I did not have good grades. It was the worst semester in my academic life. At the end of the second semester, I took summer classes in which I did very well. Carlos could not help me anymore, but my classmates offered to help me. Everybody on the campus, either students or staff, always showed kindness and offered help to move me around.
In the third semester, I made very good friends who helped me a lot from that moment and to the last semester. I started to think about switching to a completely different undergraduate program because one of the subjects called “computer engineering” was very difficult. When I finished the semester, I passed almost all the subjects with good grades except the main subject of the program.
During all the semesters the Admission Office cooperated in many ways with me, they made photocopies of the class notes, they offered to move me around from within classrooms, and so on. Some days when I finished my classes and there was nobody to help me, some classmates took my cell phone and called Dario, one of the staff members in the Admission Office so that he would collect me in the classroom. The Office of Student Welfare gave me financial aid to cover transportation expenses.
I started the fourth semester and noticed that I did not understand anything about the main subject of Computer Engineering, so I decided to switch to the Industrial Engineering undergraduate program. They approved the change at the end of that same semester. This semester I did well in all subjects. I also took summer classes again and it went well.
The 5th semester now in Industrial Engineering went very well for me. It was a little overwhelming because I had to take the missing classes from the first semester while in the other program. I took nine subjects in total to make up the missing classes from the change.
The following semester I took classes from the third to the sixth semester, and I did well. I also took an AutoCAD (a designing software) course after school hours to improve my abilities for the designing classes. One of my best memories of this year is one day when I finished my classes at 5 pm and had AutoCAD class at 6 pm in another building. At that time, there were already a few friends who were still there so I asked them for help to move from a chemistry class. For some reason I forgot to remind them to pick me up and they forgot as well; I finished my chemistry class and they did not come, but the teacher helped me to get out of the classroom and asked me if someone would come to pick me up, I said “Yes”, I would wait there leaning against the wall. I waited a while and nothing happened. I grabbed my backpack as best I could and walked leaning against the wall to get to a hallway where there were few people. A student I did not know before approached me and I told him that I had a class in the other building; he grabbed my stuff and took me there. When we arrived, there was no power in that building, so he called a taxi and sent me home. This is a demonstration that God never let me down and by his infinite mercy, people that did not even know me always appeared in the scene to help me. The next day my friends were very sorry and apologize. I told them that I understood as I was the same with many things going on and I had forgotten to remind them.
Sometimes, because I took so many classes, I did not have time to go home for lunch as I used to do every day, so any friend grabbed me lunch from the cafeteria and took it to the Admission Office, where they allowed me to take lunch and since I have never been able to use utensils to eat, Nancy or Belkys (Admission Office staff members) fed me. Later, my mother came from work to help me to use the restrooms so I could go back to class. And so, I progressed semester by semester with the support of friends, classmates, teachers, staff, especially the Admission Office, the departments of Industrial Engineering and Office of Student Welfare, and more, thank God.
Sometimes, the local newspaper wrote articles about my story.
The UNET became my second home, and the staff became my family. I did my catholic confirmation sacrament, and my Godfather was Dario from the Admission Office.
Over the years, I used an ankle brace to avoid my ankle from bending, but since it had to be tight enough to keep my ankle straight, it was affecting the nerves of my foot and I had many cramps. We could not get something that would keep my ankle straight and at the same time easy to use with any type of shoes, so I did work on a design according to what I required, and they made it in the orthopedic office where my mother worked. This was a little more comfortable for me.
I started the ninth and last semester, and we had some sort of a prom party in honor of a group of teachers chosen by the students as “The Godparents of the 58th Class of Industrial Engineers”. Some classmates asked me to write a speech. And these were my words:
"Just a few months away from receiving our degree as Industrial Engineers, I have to say that it has not been easy to get here, it feels like a journey in which I have lived so many things: sadness, disappointment, sleepless nights, sometimes wanted to give up; but despite all that, we went through many joyful moments that encouraged me to keep going, thanks to those moments of happiness is that I realize that everything is worth it when you put your heart into it; and I also think that everything happens for a reason, is a lesson that has allowed me to grow professionally and to become a better person. I have also made many friends, and several are almost like brothers and sisters, with whom I have always counted, whenever I need and have helped me to be here one step away from reaching a goal, an achievement, and therefore a little piece of this achievement belongs to each one of you and to all the people who have always supported and helped me.
I thank God for allowing me to be here, thanks to the unconditional support and help mainly from my mother Aura and my sister Gabriela whom I love very much, Mateo and my family, and also thanks to my friends and classmates (including from other classes) for giving me a hand when I needed it and for always treating me the same as any other friends. Definitely, without their help all these years in school would have been much more difficult. They not only helped me with school stuff but also helped me to go hang out and get some drinks…
I also want to thank the Godparents of the 58th Class of Industrial Engineers, whom I appreciate very much for extending their hand to me in one way or another. And very especially to Jusbeth Zambrano, who at one time, gave me some words of advice, unknowingly lifting my spirits when I needed it most.
And I cannot forget thanking the staff of the Admission Office for all their support for anything I needed during these 5 years, the staff of the Department of Industrial Engineering for their patience and collaboration, and the staff who work in the transportation program of the UNET.
Thank you very much to all…. José Rafael Ramírez Ramos”
The last semester passed between classes, assignments, projects, and Prom’s Thursday.
Every Thursday we went on an after-class social called “Prom Thursdays” to hang out, get some drinks, and spend time together. My friends gave me some drinks and many times I came back home a little tipsy; the alcohol helped me to relax and calm my involuntary movements. I finished the semester and passed all the subjects. I started to think about the project I wanted to develop for my degree thesis (required to get the degree), and Professor Bianey Ruiz accepted to be my tutor.
I finished classes in March 2010; the last day of school, we used to take a final walk throughout the entire campus with music and then we would go to an outdoor party where we celebrated with more music and beers. The graduates would pour beer over each other.
I do not remember too much about that party, I only remember that when I was getting to the party a beautiful girl ran to hug me and congratulate me on my achievement. Those who saw her say her eyes were watering when she hugged me and then left.
After the hangover of the party, I began to do my degree thesis: "Proposal to Improve Teaching in Higher Education Directed to Students with Permanent Disabilities in Engineering Careers". While doing this project I had to learn how to make search for reliable internet searches of bibliographic sources; at this point, I had great support and advice from the UNET library staff.
I finished the project in July 2010 and presented it to the judges on August 5, 2010. I was very nervous because it has always been difficult for me to speak and for anybody to understand me. I arrived at the presentation and hardly even spoke; Gloria and Erika Assistants to the Department of Industrial Engineering and together with my mother set up everything for me. Then one of my friends came to help me with the laptop and the slides, and when the time came, my tutor and two judges sat down to listen to me. I began to speak and did not stop until I finished. God was there with me. I explained each slide synchronously almost without turning to look at what the sequence was, and they understood almost everything I said. When I finished, they congratulated me, and I saw some tears coming out from their eyes. I approved my thesis with 9 out of 9.
In November of 2010 with all my family’s savings and efforts and as a gift for my upcoming graduation of Industrial Engineer, I went to a doctor’s appointment at the Memorial Hermann Hospital in Houston, United States. There I was evaluated by a Neurologist who did not bill me for the evaluation. She mentioned to me that the evaluation was free because of everything I have done and achieved despite my severe disability. She recommended a Deep Brain Stimulator surgery, which would allow me to improve my abilities in a high percentage and achieve the personal independence that I have wanted my whole life. During the appointment, I asked her if the previous surgery would interfere with the improvement that she was promising with this new treatment. She always said “No”, that the treatment with DBS would not be affected by the previous procedure. I came back to Venezuela with all the hope and enthusiasm that I would improve my condition to get a better quality of life.
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My graduation ceremony for Industrial Engineering was on December 4, 2010, at the National Experimental University of Táchira (UNET). I did rank in the 20th place for academic performance out of 84 students. Thank God I finally received my degree, and this degree is not only mine, but also for each person, student, and teacher that represents the UNET family, that gave me the support and help me to mobilize, make photocopies, give me a word of encouragement, and be my hands throughout my career so that I could get to this moment.
During the medical appointment in Houston, we were informed that CITGO-PDVSA (Venezuelan government entity), through its foundation in Houston, gives help to Venezuelans who need any type of medical treatment in Houston. In January 2011, we began the application process, and we requested the aid by sending my medical records where even doctors assigned by PDVSA recommended the surgery and treatment to be performed in Houston due to the complexity of my case. So it took us approximately 9 months to send all the paperwork they asked for. At some point they did not know what else to request, and we realized that they just did not want to help me; most likely, because my mother and I, were on a sort of database (blacklist) the government in Venezuela had to target opposition followers, for which I suppose, I had no rights to receive any benefit from a company that belongs to "all Venezuelans" (according to them but in reality belongs to the government). I have never been a follower or supporter of the actual government, so I decided not to continue with the process.
I decided to create a campaign online by writing my personal story, telling how I managed to study typing with my elbow, and asking each person who read my story to donate a dollar so I could get the surgery and the treatment in Houston to improve my quality of life with a medical procedure (without requesting any type of government or public aid). I set up a blog and shared it with a colleague from UNET: She knew many people and I thought she could share my story. She shared it, and by God's mercy, it reached the hearts of many people and they started to make donations.
Another friend saw the post on Facebook and immediately with great affection and willingness to help me; forwarded it to Beatriz Adrián, a famous TV journalist that worked for a TV channel with a large audience at that time in Venezuela.
Once Beatriz Adrián had my information, she contacted my mother to fly to San Cristóbal in January 2012 to interview me along with several friends of mine so that they could share their experience with me, and we would be on her TV show called “Otra Vision” (Another Vision). In mid-January, Beatriz Adrián arrived at my house very enthusiastically to record the show. Several friends came to my house making jokes about how I would make them speak on national TV. She started with all my friends telling stories about me, and we all became emotional, our eyes watered at some times, my sister cried while talking. Below is the link for the show in Spanish.
The following week, the show came out on national TV and they posted my phone number as contact information for donations. Suddenly everything was crazy; I was only asking for one dollar per person and many people started calling to make donations. People called me from radio and TV stations in the city to interview me, and since I do not speak well, my sister and brother-in-law took me to the interviews and helped everyone understand what I was talking about. People also called me from schools and colleges to inquire if I could give some type of inspirational speech to the students and tell them how I managed to study despite my severe disability. Everywhere I went, they mentioned their great admiration and pride that I was there.
In Bailadores, my family members also held fundraising events to help me. At the San Cristóbal Fair holiday event, my family and friends hosted different activities for fundraising and to spread the word with my blog. During the fair events, a little girl of about 4 years old dedicated a song to me and everything that she collected for that song was donated to me. And so many people helped and supported me and made me feel that my life and my effort were very valuable to them. In addition, a man sent me a letter to tell me that he wanted to help, but at that time, he could not, but on few months, he would start his own business and help me. 2 or 3 months after that letter, the man began to deposit me every month an equivalent to $ 4.
Some newspapers wrote articles about me:
We collected all we needed for the procedure and a portion of the recovery medical treatment. Acquisition of foreign currency in Venezuela was very limited due to the exchange control regime in effect, thanks to Beatriz Adrian and a contact she had in the government, I was able to arrange to get all the collected money in US dollars.
SBA Airlines donated the tickets from Venezuela to Houston, for any trip I needed even before the day of the surgery. Ms. Lesly Simone on behalf of the board, Ms. Luisa Elena, and all the employees who had contact with me, made me feel that I was someone very important to them.
We flew to Houston and my family from my father’s side, who live in Houston, welcomed us with great affection and gave us support by receiving us in their homes. Shortly afterward Venezuelan people who lived in Houston called us to meet me and give us support to go to the hospital every time we needed it. They also made contacts for me to go to TV shows in Houston and more people called us to support me in some way or another. Thanks to God's mercy, my short story here also touched many hearts.
On May 22, 2012, I got the surgery. They woke me up during the procedure to insert the electrodes in my brain. At all times 3 to 5 people were around me, asking me if I needed anything; at one point I said that I was cold and immediately they covered me with warm blankets. A month later they inserted the DBS batteries in my chest under my left shoulder; a couple of weeks later they turned on the batteries and did the first calibration.
In the house where we were staying, every afternoon I went out to the street with my mother. I tried to stand up by supporting my body leaning against the car. I tried it for several days; a few days later I managed to maintain my balance and stand up without support. I tried to walk but the splints I used to wear prevented the free movements of my feet. The next day I told my mom not to put the splints on; we went out, I spent a long time trying to stand up and when I felt safe I started to walk, almost tottering but I managed to walk with my mother behind me. For me it was the greatest joy in a long time. I did not stop smiling for the whole day; I told my Mom to throw away the splints because I was not going to need them anymore. Every day I went for a walk, some days were difficult, but some other days were easier for me.
Here is a video of me walking by myself after the procedure.
A few days later we went for the second calibration, but after this one, I did not feel the balance to continue walking; however, I kept trying. They performed many calibrations; I had an average of two appointments per month to calibrate the DBS. The objective of these was to find the correct combination of electrical impulses to reduce dystonia in motor functions as much as possible and therefore improve my mobility.
At the end of 2012, we kept trying, making calibrations, and some of the nice people who helped me kept in contact with us, supporting me and encouraging me. Among these people is Mr. Efrain Riera: a man of a generous heart. Thanks to God's mercy, Mr. Efrain offered me a job in his company in Venezuela and I was able to do it remotely, while I was doing my medical treatment. On February 2, 2013, I started working as a Project Engineer. My main function was to search for information online. My days were all about going for the calibrations every 2 weeks, trying to get more balance, and work remotely. Sometimes we went out with some of the people we met in Houston to have some fun.
One of the many people we met when we arrived in Houston had a small non-profit organization. They helped me out with the collaboration of a Zumba group, and many people to organize an event to collect money for my treatment since it was very expensive.
At the end of 2013, another non-profit organization in Houston heard about my story, helped with the expenses, and rented an apartment so I could be more comfortable. Meanwhile, we continued looking for the right calibration that would help me improve. On one occasion, the first calibration was put back in, but nothing happened, also in two specialized centers, I did physical therapies, including coordination exercises and pool therapy sessions.
In mid-2014, as no progress was seen with the treatment, the Big Little JC Association foundation donated a scooter to me so that I could move easily and my mother would not have to help me. We continued the treatment for a few more months.
After looking for the correct calibration for three long years, going with two specialist doctors, and exhausting everything to achieve the calibration, but unfortunately without success, it was decided to turn off the DBS.
Doctors still do not know why this treatment did not work; my treating doctor told us in the last appointment that probably it was because of the procedure I got in Cuba in 2002 which caused huge damage to my brain. However, although it did not give the expected results in terms of improving my physical disability, it did leave me with big learning lessons, and most importantly, I had the opportunity to meet wonderful people who taught me the meaning of sincere support and solidarity. Only God will know when and how I can become a little bit more independent or achieve a little comfort in my day-to-day routine. However, for now, I can only give my sincere thanks to all those who in one way or another supported and helped me. We flew back to Venezuela.
Once in Venezuela, I requested the orthopedics to make my splints again (they never billed me). I put all my energy and efforts into my job, which I was enjoying and making good money. On one occasion, I visited the company's offices to personally meet my colleagues and learn more about the processes. Mr. Efrain's wife and all the coworkers expressed their admiration and pride that I was part of them.
My mother was thinking of getting back to work, but I told her that it was not necessary, she had already worked a lot. I wanted to protect her from the hideous social situation that was going on in Venezuela and all the insecurity issues we had there. In the past she had been assaulted 2 times in the office; now that I was able to work, I could pay all our expenses. I was also able to make some arrangements in our apartment to make my life at home a little more comfortable.
In mid-2015, one of my colleagues was looking for someone for a short designing project using AutoCAD software for the company that she was working for. I offered myself so I could develop experience in this skill, and I did what they needed in one month. For one month I had two jobs, once I finished the project, the owner of the company went to meet me at my home to offer me a position in his company with all the benefits of a regular employee in case I did not have a permanent job. We had a nice conversation and I thanked him for this nice gesture and told him that thank God I had a good job with the other company since 2013.
Three years passed and I was not thinking at all about moving to another country as part of the immigrant wave that was taking place in Venezuela even though the situation in Venezuela was becoming more difficult. I had a very good job, I was making good money to live in Venezuela and as inflation increased, my salary increased to the same extent. However, in the nation all other things were deteriorating more and more. In my apartment complex, the elevators started to fail very often and that was affecting me very badly; when it was not due to electricity shortage, then it was the mechanical failures. For me to leave my apartment, I had to use the stairs, which affected my right hip.
On the other hand, our lives were at risk every time we went out, so all that situation pushed me to make the decision of resigning from my job and moving to Canada. We planned to stay short term at my sister’s, who was very happy to have us.
In my sister’s house, I also must use the stairs, but at least we feel safer and we are not exposed to risky situations. In addition, it was going to be temporarily while I waited for my documents so I could continue working in the company where I worked since 2013, now from the headquarters in Canada. With this, I could move to my own place and have a more comfortable life.
However, with the pandemic everything was delayed. God's will and his purpose with my life may be different. Perhaps God wanted me to fulfill what I had said a long time ago about writing my life story before I could start a new chapter in my life with a new job. For long time, several people have been telling me that if I write my story it could be an inspiration for many people.
While I was waiting to start working, I was connecting with some people and CEOs who contacted me, and in short but very concise conversations made me understand that my story could be more valuable than I could imagine helping people and that I should have a greater mission to the eyes of God, by sharing my experience, at this free time before starting a new job.
I have always thought about writing a book with my story, but perhaps a book would not reach as many people as it would do this way. I think this is happening according to God’s plan. And here I am giving you some inspiration, typing with my elbow about the challenges and struggles in life.
While my friend Marianna was helping me with the translation of this text to the English language, I started working in my same position, now as a contractor from the headquarters in Canada, thanks to God's mercy and the great support of Mr. Efrain.
After more than 10 years of supporting me financially since he first got to know me through the TV program, due to economic circumstances, I no longer have his support. However, I will always be grateful for the help he gave me. I bless him for the time he accompanied me on this journey and sincerely wish him the very best in everything he does.
On the following link, you can see my identity document and records of my University, the UNET
https://1drv.ms/b/s!AsbYJEn3BAEgp3gHwzS_l8XPttgZ
Thanks you very much, God bless you
José Rafael Ramírez Ramos
C.I.: 15.695.527 (Venezuela ID)
Industrial Engineer
Almighty God HaSehm, let me see Your glory, let me see Your mercy, and let me see Your goodness.
