Vida by Estela Sanchis

\\LIFE

27.09.2013 // 10 AM

\\LIFE

Text and photographies by Juan Gabriel Villar

15.06.2000

At that moment of life Moment of breathing blue, think in red and fly to the cardinal points where young ideals emanating from puberty take you ... but it turns out it’s not the same for everybody. Very young and always smiling you have to start to trust a new friend. It’s really not just one but a few, but they all have something in common: a white coat. Constant comings and goings at different hospitals with a strong smell of desingection and bleach begin to determine the youth of a boy with ambition and aspiration. Tubes, colored porridge, needles, droppers, thermometers, countless medications and even scalpels will be that day on the objects I’ll become more familiar with. From a young age I was a very outgoing person, I liked the street, people, and discover the human side of people. As I got older I decided to experience and enjoy every stage of my life without ever refuse to accept them, but rather, try to enrich each of them. At age sixteen, going through puberty, without warning, my life began to change. At first I did not give more importance: “it will pass, it’s nothing, it hurts only occasionally and not have to be anything serious.” Then comes the concern, because deep down I knew that something wasn’t working well: the constant coming and going to the bathroom, widespread weight loss ... but mostly the doctor’s denoting that even he knew what was happening. In the beginning was the poorly healed gastroenteritis, then nerves, anxiety, depression, colic, and even my perfectionist nature, worried, or even worse, “this is because your Mommy does not cook for you anymore.” Infinite diagnosis, infinite words and phrases to remaind the same, not knowing what’s wrong.

My person was changing, my psyche was undermining Repeated comings and goings to Emergency, fever, chills, diarrhea, extreme thinness, but especially the face of the people who love you, this is what hurts the most. At that time the uncertainty has taken a toll on the family and in my own person. The lives of others go straight on, and I’m stuck in the uncertainty of a bathroom. Anemia levels are high, the feeling of exhaustion does not let me do anything slightly out of the ordinary. But I’m still holding on with a smile. I don’t know if it was ignorance, misinformation or simply the desire to be young which made me wear a backpack with many kilos on the back and climb the mountains that were necessary. The large tubes inserted above, below, the sedation, X-tacs, long time watching the clock in a waiting room and many days and hours, minutes and seconds, finally get a correct diagnosis. After nearly three years of waiting, they baptize it.

From nightmare to victory there’s only one step. It was a hot summer day in an old hospital, in an sad examination room. I remember it as if it was yesterday. The atmosphere was light brown, with my mother to my left and who was my doctor for ten years in front of me. Behind there was person I can’t see the face in my memory. I just know that he was holding something in his hands. When they gave me the name of my new friend, my face did not flinch. I assumed it from ignorance and strength. At that moment I load me down with a large backpack. Maybe my backpack intentions were others, but all I knew was that this bag would not make me stop in my way.

27.09.2013 // 11 AM

27.09.2013 // 12 AM

4.1.2009 Back to the race From the day in which my companion was baptized until this particular day my life, it was test after test that I could overcome thanks to my attitude, and to new medicines. My relationship with my friends in white coats did not start very well, because the white coat who controlled me used to received me with sad long faces, so his negativity made me stay long without going to visit him, knowing that was not the correct way. My studies follows one another, like my people. Not everyone around me knew what I suffered. Why should they know if I could hide it? I only explained it to close friends and they still did not understand what was wrong. When I went out at night I was “the juice boy”. By day the question “the bathroom again?” was a constant. This companion in my bag was fine, just that backpack weighed, and weighed a lot because I was very skinny. One morning when I woke up something in me not responded. My left leg did not work, and I neither felt it. I wanted to scream but I held tenaciously, checked my backpack that this morning weighed more than ever. Back to the race, paralysis was growing: toes, hands, senses and sensations of pain, tickle, cold, heat, were giving way to a kind of constant tingling. Again those whose faces uncertainty, the worst enemy of anyone. Concern took possession of the people around me. I fell, I stopped driving and could not write, and the white coats that I had to return back to resort, even the gown that I tried not to see again, did not know what was happening. Again on the waiting list for testing, and meanwhile tried to forget everything I was leaving to do to not overwhelm me. Again tacs, resonances, gadgets that at first seems so weird to me, but habit made me finally know it, even more than I ever thought. After losing savings in doctors and studio time, after passing tests in which the needles pricked in muscle and movement were twisted by the intensity of transmitting electricity running through every nerve in my body, again all this ... other name, long and intense ... but with an expiration date. That second ordeal was due to these new drugs that kept my first ordeal inside his backpack. At least this is what they said, but I think even the white coats themselves never knew the reason, whether it was because of the medicine or if it was because of

what was in that bag, which by the way never made â&#x20AC;&#x2039;â&#x20AC;&#x2039;me sweat more than usual. That new partner would leave, it would take his time, but would leave. Time passed for just over a year until I could return to what it was a year ago.

27.09.2013 // 01 PM

And fever came And that’s when the pain took over my life again, in the moment when I just take a little weight to the bag that never got to me, just as was again myself. In that way came 2010. Have you ever remembered pain? Only pain? I just remember that at the time. That new and retrieved smile turned to fade. The degrees of fever were my daily bread. The night for me was a puddle of sweat involved in degrees of fever, 39º - 40 º constantly. I needed to change up to 5 shirts on a night when sweating. Strange lumps appeared on my legs. A white coats called me to see them, since only known it in books and was the first time he actually saw them. The weight was increasing and the pain was already tearing me while leaving weaker. An hospitalizacion full of tests and antibiotics gave no evidence of the responsibility of it all. Homecoming, days and even months passed and everything was the same. Fever, sweating, pain, more and more antibiotics combined with standard treatment, but everything was the same. May came and the situation didn’t improve. I also had a pain in my that would not leave me barely breathing, too intense to bear. Back to the emergency ... tock, radiographs, cultures, analysis, ... uncertainty, hospitalization again. 17 days admitted because they saw abscesses in the spleen and associated it with immunosuppressive therapy. The amount of antibiotics made taking fungi surfaced all over my body, luengo, testicles, throat, skin, ... finally they let me come back home. Hospital days were very long. My house had become my hospital, the white coats used to come and medicate me on my couch while I tried to entertain me. During this period the fever had ceased, I believe that thanks to antibiotics. Then August arrived and suddenly ... FEVER! They thought I was obsessed, but I knew the way, it was back. Other hospitalization was joining my collection, like many other tests.They decided to make me the last tac, they could not do more I was being radiated too much. That day they introduced me contrast everywhere in my body. The next morning colonoscopy was my breakfast. I could not remember the backpack, just knew I had to keep fighting. At this point I had almost ten days without eating physical food, it was all via a pathway from the arm to the heart where they introduced food and medication. It came the day of the results, which I heard tearfully:

“We have to remove the large intestine and spleen, you have a perforation from the colon to the spleen that is making your spleen to grow due to infection. Your life is in danger. You will wear an ileostomy for a time and then we’ll rebuild the transit. We must control the infection does not pass through the heart because the spleen is very close. Luckily you will keep you rectum that we can rebuild it in the future. From today you can’t drink, just wet your lips. Hydration will be also by vein.” I began to cry. One of all these white coats who came to tell me all that sat next to me and calmed me. I laid all my doubts and as my tears fell desperately she calmed me with his words. “All this is necessary to save your life.” Luckily my heart was fine, but while waiting for the operation I had several microinfarcts because of the spleen infection. During the wait the day of operation my spleen started bleeding one night and caused me a sepsis. My blood pressure was lower each moment. They drove me to the ICU quickly, and monitored me. That night, about two in the morning and unable to sleep, that night I felt supported. They could visit me at two in the morning in the ICU. They told me that everyone was downstairs because they wouldn’t let them see me. I felt supported, they were there for me, and I had to go on. They gave me sleeping pills and the next morning they woke me and they told me that the surgical team was going to perform emergency surgery. They had been preparing the operation since six in the morning. My mother came in tears, told him that everything would be okay. The mask and green gown she wore didn’t favor her. Nurses came for me and let her accompany me to the door of the operating room. She told me she’ll wait outside. In the operating room someone who I still remember, as I remember all the people who were in that process, asked me: - What do you want to dream about, cars or girls? I answered: - girls. After that I remember nothing.

27.09.2013 // 02 PM

Awakening I was born on September 27, 1982 and I was reborn on September 2, 2010. “Juan Gabriel, Juan Gabriel”... I listened in the dark. I awoke with the voice of the nurse in the ICU again. Apparently everything had gone well. The first thing I asked was how long took the operation. “Almost eight hours,” she replied. I was very lightheaded, dizzy, I couldn’t open my eyes. The anesthesia left me shattered. Drips and drips around me, painkillers, hydration, medication, and under the sheets... under the sheets 60 staples, two catheter and an ileostomy. It wasn’t a big surprise, I didn’t take it bad... I was there, still alive. The first to come was my mother again, followed by my father, my sister in tears, uncles and friends. Everybody in the ICU, everybody with me. I remember it and I have to blink back tears. This difficult moments with all this people around me. All my fight deserved each and every one of them. The first thing I told my mother was: - “Mom, it’s all over, I’ll be fine.” I just remember smiles and tears of joy in my daze, I could barely think due to the anesthesia and painkillers. I spent several days in the ICU. Boredom was infinite. I loved it when they came to wash me because I could talk to people. They treated me well, very well. Those people have merit to give and sell. The surgeon came to see me and told me that I had been reborn, he said I was strong and brave. Days passed, and they decided to take me to the ward. They told me that it would be nearly a week I won’t be able to get up. This same afternoon I stood up. I got tired of lying. I asked for help from a family member, I grabbed the scar, grabbed all the drips and and supported me in this family member. First I sat down, then I stood up. It was time to fight, I feld well, I wanted to move forward, the hospital could no longer keep me and for that I had to push myself like a little boy learning to write or rather learn to run. The nurses were glad to see me but my mother made a great fuss: - WHAT ARE YOU DOING? So I just gave a few steps, but I did it because I wanted to. They started to give me some water and tea, after more than 17 days without drinking and eating. I tasted the glory. At first I couldn’t stop vomiting. Then they teached me how to change my ileostomy. I began to learn to take care of me

again, to assimilate my situation. Meanwhile I already wanted to fly again. I approached the door of the hospital just to have some air on the face. It was the only thing that they let me enjoy. I had doubts, I had questions that no one could solve. How would be my life now? I sank into the hospital bed and got lost in the music coming from my headphones. So until the day of discharge. Coming to my house was strange. So long in the hospital... I had forgotten corners of my own home. But something hard was to come yet. When I got home I began to be aware of everything that happened and tiredness took its toll on me. I returned to mourn, I couldnâ&#x20AC;&#x2122;t understand what had happened, or rather why it had happened. Do I deserved it? People came to see me at my house, and I was angry for not being able to go out with my people and hear how well they had spent the previous night. I had despair and tears became unbearable.

27.09.2013 // 03 PM

A good friend who wasn’t wearing coat They took me to a psychiatrist, but he end up being one of the best persons I’ve ever known. He explained me that I was just a little lost, and he couldn’t understand why after having fought so hard, now I was in that situation. This man had traveled all around the world, had treated very famous patients, had studied the mind off pat. He used to tell me stories of famous patients, without naming them. He used to give me strength and made me reconsider my life. One day, at home, a few weeks after the operation while visiting assiduously psychiatrist, I decided that I wouldn’t mourn anymore. I got up from the couch, I sat in front of the computer and told me it was time to fight, not just for me, but for all the people suffering like me. I started to write and composed this letter:

Juan Gabriel Villar 7th october 2010

Denia,

My name is Juan Gabriel Villar and I express my consent to lend to the study of new therapeutic treatments for chronic Crohnâ&#x20AC;&#x2122;s disease, inflammatory bowel disease, which I suffer for more than 10 years ago, and I have been recently intervened with total colectomy and ileostomy and ileorectal anastomosis protection, both inside and outside my country if necessary. This consent is not a joke and I reiterate my desire to lend to new medical studies to fight this terrible disease in recent decades is booming in young people, and which deteriorates our quality of life in a terrible way. So I volunteer to became part of the studies for new medecines, stem cell advances, and even studies of biomedicine and artificial organs with prior information of the study. So I do my bit to combat this terrible disease in which patients carry a poor quality of life. Likewise I appreciate that this letter was not lost on any progress center or hospital, asking the staff receiving that they forwarded it where my manifesto could be heard. Greetings, Juan Gabriel Villar

27.09.2013 // 04 PM

From that day I stopped to mourn, I assumed my ileostomy as a part of me, I started going to the beach with it, I went back to sports,... I can say that thanks to my ileostomy, I relived. I never went back to visit the psychiatrist, who, in fact, had become my friend. I still remember the first time I went out for a drink with my friends. The music made â&#x20AC;&#x2039;â&#x20AC;&#x2039;me goosebumps and sensations produced me chills. I wanted to dance, to laugh, a sequence of sensations I had forgot reborn in my gut. Wonderful.

27.09.2013 // 05 PM

The end After a couple of years, the first tests after the operation showed that the disease had returned. I didn’t care, I was fine. Late last year the tests went well and they decided to operate on me to slam the ileostomy, the ileostomy that I had learned to wear in a wonderful way, with which I had get used to it. At the first time I was happy so they told me the operation will be on January 4, 2013. After this, as the day approached, I began to decide not to have surgery. I didn’t want to go under the knife again, I didn’t care about the ileostomy, or the bag as some call it. That day I got to the hospital and the first thing I said was that I wasn’t operating. My mother began to cry remembering all this suffering. The surgeon who sent me to the ICU some years ago couldn’t believe my recovery. She told me that I was young, that it would be better to be operated. I said I’d think about it overnight. In the end I did it, I had the operation. It was a few days without eating or drinking more, but it wasn’t so bad.

27.09.2013 // 06 PM

And finally “The strength” Guess what? People has always been brought up with the limit factor, I’ve even heard that it is sometimes desirable to surrender and let go. What I’ve learned better over nearly 15 years of backpack, struggle and effort, is that people are stronger than we think, especially when the only option you have is to be strong. I have acquired values, principles and ideals that otherwise may never have learn or lived. I have lived moments that I don’t wish on anyone, but at the time they have made me feel, feel and learn what is the world, what is it made with but mostly who compose it... and how those people deserve your fight, my fight... only for having them by your side, only to have them by my side. I have made to myself and I haven’t had time to receive influences that conditioned me because I was worried to bring my fight on, to give the true value of what truly has value: a song, a walk, or cool breeze, the smell of moisture on my cheeks, how a look can say so much and how a tear is not always of sadness. I have met many people and have never stopped learning from them. Some have continued their journey, others have remained with me, but I learned something important from everybody because every single person in this world can teach us something, you only need to find it. Guess what? I will never give up, I will fight and I will enjoy every moment so the day I really have to go, in the deathbed, I could regret anything I did so I could leave with a smile and without fear. I don’t need to have more than I need, because I’ll waste time in maintaining it. Seize the time, don’t miss a moment that will never be repeated. Thinl yourself the most important person in the world, because no one should dictate what you want to believe or what you can’t do. It don’t worth looking back ... ever, but neither looking forward because we haven’t the ability to know what will happen. What we have is the ability to look to the present and to be what we really want to. Remember one thing, be human and humble. Never let an obstacle or fear stop your dreams. Confront them. Sure one way or another you can beat them. Amaze yourself like I do, playing, singing, dancing, laughing, kissing, hugging, as I also do.

Because, guess what? No matter how much I have, no matter how much I must fight, how many obstacles I have to overcome, there’s only one thing I know for sure: I don’t want to waste my life.

…I’m the desire to live