Time off for a person with SMA in Peru

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*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

SMA III

3 thoughts on “Time off for a person with SMA in Peru

  1. clarissa watson

    Julio, I was brought to tears after reading your article. Yes, we can always see the blessings God has bestowed on us. I’m thankful you have such wonderful friends, which is a reflection of your character . Thank you for such an inspiring story.

    1. julio2015

      Dear Mrs.Watson,
      I thank you so much for your words. People like you and your family give me courage to continue fighting for my life while I try to make a difference in my life. Thanks from the heart.

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