3. 9. 2020

English Version | Testemunho Magazino

by Magazino, DJ

 

The September issue of Vogue is special. For the first time in the history of the magazine, the theme will be the same in all countries where it is published, and the word “HOPE” will be printed on all of them. That was what they invited me for, to write about hope.

 

I was invited to share what I have been experiencing recently and the way I have looked at life. The last months of last year were very busy, I spent several weekends in a row traveling: I played in Holland, Brazil, Morocco, Belgium, England, Paraguay, Argentina, Austria, I basically arrived home in Lisbon on Monday and rested until Thursday for a new trip. Out of nowhere, I started to feel extreme tiredness, which I thought was jet-lag, bad nights of sleep, different pillows every night, in short, little to no rest (I thought). On December 2nd, I had just arrived from Vienna, I left my bags at home and went straight to the hospital. I had a new gig on Thursday in Moscow, and I wanted to attack the pains in my body as soon as possible. I went into the hospital at 11 am and after a paraphernalia of exams (I did them twice) around eight at night the medical officer took me to a room and said: “I have bad news to give you, you have a leukemia." I remember that, at the time, I understood pneumonia and I thought to myself "Wow, it won't be easy to go to Moscow on Thursday, with the cold there and with pneumonia..." Meanwhile, the doctor said I could no longer leave the hospital, and then I realized that it was leukemia after all. I was crawling, I called my brother, crying, crawling. I was hospitalized, I started the oral chemotherapy phase - I spent a few weeks in the hospital; came home a few days; it got worse and he went back to the hospital for a few more weeks to stay there. I walked back and forth for three months, the desease was in control of me, in the hospital always in bed, at home on the couch, I didn't move, completely resigned.

In one of the admissions at Hospital da Luz, a university doctor told me that I would need a bone marrow transplant. They transferred me to the IPO (Portuguese institute of oncology), where they confirmed the diagnosis. I didn't walk, I was pushed in a wheelchair by my friend Cruz, and I left the IPO crying. I live on a second floor without an elevator, the classic Lisbon building, and my friends carried me up the stairs until they lay me in bed, and they threw themselves on the sofa to regain strength. Fortunately, that week I had four people, who curiously did not know each other, and who came to visit me at home on different days. And that changed my mood. Ginger, who cuts my hair, connected me to the ground; Bruno, a Brazilian friend who lives in London and who happened to be passing through Lisbon and had dinner at my house, gave me a lecture  on the power of positive thinking on our lives; Fernando, who came from the Algarve to get me off the couch and walk with him for a few days, suffering horrible pain; and finally chef Ljubomir, who came to my house to cook - and when I saw him lame walking up the stairs, with crutches, laden with bags, I thought “This guy is going to throw the book at me”, and so it was, and thankfully, he called me out in that rude way and made me see that I had to change my mindset.

My life changed that week. The next day, I woke up and started writing, from the notes I took I found that I had accepted the disease but had not internalized it, I did it in two stages of daily thinking about the disease (problem), I started to focus solely on the solution, I stopped constantly asking myself “Why, why me?”, and I started to ask myself “How am I going to get around this, what’s in my power to win this? ” That week I lay down every night full of pain and taking massive doses of morphine, but I always thought: “Tomorrow will be another day towards recovery, it will be better than today”, and that's how I started working on positive thinking, fundamental in this whole process. I started to feel more and more optimism, to feel much more confident, happy, and I have no doubt that my positive mind acted very powerfully on my body, gave it energy and strengthened it, two weeks after, I was walking peacefully without pain in the house and had stopped taking morphine. During that time, I realized with all clarity that the head commands, and the body reacts. I started thinking every day when I woke up "Hey, I am in the middle of my life, the second part is almost starting", and as in a good football game, everything is decided in the second half, that is, the best is yet to come and there’s nothing more fantastic than rebuilding life with enthusiasm and adding the details that were missing from the first half of my life to win over this odyssey.

I regained weight, started to walk, to ride a bicycle, to eat very well. I worked hard, because this is, without a doubt, the most important moment of my life. I kept postponing chemotherapy as much as I still didn't have a bone marrow donor compatible with me, but I got to the point where my body couldn't take it anymore and my IPO doctor (Dr. Francesca Pierdomenico) called me to be hospitalized for six to seven weeks to face a first cycle of chemotherapy. Dr. Francesca is Italian, living in Portugal for a long time, she is beautiful, tall, a little younger than me (I am 42 years old), she speaks a lot with her hands, like a good Italian. I like her very much, she knows that I enjoy when she goes straight to the point, no matter how bad it is, and I have often cried after our visits, but that is part of the past; now I play with her, and I always parody the results of the exams, whether they are good or bad, I think she is even a little uncomfortable with my good mood in the face of the bad news she gives me. On June 2nd, I went to the IPO to stay, I took a suitcase full of clothes, a pedalboard to exercise, an organ to play, books, a pad to write on and my iPad. I had to keep my brain busy during those weeks that I was going to be locked in a room. I got to the room and there were two women and a man, all older than me. In a few days I got them to pedal, I played the organ to lift up everybody’s mood, and I managed to talk only about the solution and not the problem, to talk only about the future and not the past. It was a very difficult victory because the subject at the beginning was invariably the disease, when I gained confidence and started to “lead” the room, nobody talked about the problem anymore, the focus was now on the solution, food, exercise, and no television news at all. 

One of my roommates was more than 60 years old, she was very religious and every day at 6.30 pm she connected via YouTube to the Sanctuary of Fátima and followed the homily, prayed and sang. One afternoon, it was unbearably hot and I walked naked, passed by her and she motioned for me to wear something, I laughed and said “The priest is not watching, tomorrow I sing a song to make up to it.” I got along very well with her. I am agnostic, but I made the first communion and confirmation and I still know the main prayers. After 15 days in the hospital, and after taking ten hours of chemotherapy on a daily, they decided to test COVID-19 to all inpatients because one of the employees had tested positive. I took the test in the late afternoon and at dawn they woke me up: “We are going to have to isolate you now and transfer you to another hospital (the IPO is a Covid free hospital) because you tested positive. Well, I thought. “I have no symptoms, it will be nothing, I will visit another hospital, I usually spend a third of the year in hotels, in 2020 I have spent more than half of the year, but in hospitals (I’ve already been to seven different ones), and so it was, they transferred me to Santa Maria. I had a ceremonial exit, the nurses equipped as if they were going to space and me leaving on my own feet. In Santa Maria, again, I entered a ward only for patients infected with COVID-19, and stayed in an isolated room. At first it was a little scary, I only saw the eyes of nurses, doctors and assistants, but I quickly started to know the voice and the accent, and to call them all by name, I realized that they are not very used to it, but they like to be recognized. I was getting worse every day, in addition to the virus and chemotherapy, there was a bacteria lodged in my body that is thought to have entered through the catheter in my neck. The situation started to get very serious, very high fevers, each time I had to have more oxygen assisted, and I don't even remember the last few days before I went into a coma.

They called my family to inform them that I had gone to intensive care and that I was in a coma, connected to a fan. The diagnosis was serious. After 30 or so days they woke me up. It was a very complicated day. I remember having nurses around me, I just saw their eyes, they were dressed as if they were going to space, I didn't know what I was doing there, I didn't recognize myself, I couldn't move, and I couldn't speak, they tried explain me who I was with some videos of me playing, then I asked to see myself on the phone and I didn't have hair, it didn't match the person in the videos and I didn't recognize either one. I cried all night, it is said, and the next day they tried to explain everything to me again. Meanwhile, the television was on and there is a MEO ad going on all the time and I recognized the protagonist, I pointed to the TV and made a gesture to say that she was my friend. They asked me where did I knew he from and that’s when it hit me: Marie worked with me at Bloop and accompanied me on several tours I did. Gradually, I regained my memory and I nodded that it was me, but that I didn't know what I was doing there or why I didn't have hair. Even today I don't know who shaved my hair, I ask everyone here, but they laugh and nobody tells me the truth (afraid of my reaction), he was already falling because of chemotherapy and they decided to shave it when I was in a coma.

Two days after I woke up, and already aware and myself, I started to get  several testimonies from doctors and nurses of what had happened, and they had several facial expressions that reveal the seriousness of the situation. “You knocked on the door of death, you got in and you managed to get out through the window”, “You managed to bend the storms, considering everyone who got there stayed along the way”, “You had both feet in the grave”, “It's amazing how you’re here smiling after what you've been through.” These testimonies, and the fact that I felt that everyone wanted to see, with their own eyes, that I was alive, made me realize that I must have been really bad. In fact, I don't remember anything at all, the only memory I have of the 30 days or so of a coma is this; the agitated see and a whirlwind of infinite colors enveloping my body. During the coma, they found a bone marrow donor compatible ten out of ten with me, that is, 100%, which is fantastic. The donation appeal campaigns that my brave friends made have had a good outcome, I still don't know who the donor is, but I really want to know him despite knowing that this may not be possible. The doctors told me that they told me about the donor during the coma and that I smiled, who knows if that was the key factor for me to cling to life with the few forces I still had left. All of this had a huge influence on my mood, I felt immensely happy to be alive, and I was extremely motivated to face what is yet to come.

This time I internalized and accepted the state I was in very quickly and I remember thinking: “If the last time it took me almost two months to walk again, now with less than 21 kilos and just moving my hands and completely dependent, including to eat, brush my teeth and open a bottle of water, I will only get up from this bed in six months.” As I could neither speak nor write, I made a very objective rehabilitation plan in my head. In seven days, I had to be able to move around alone in bed without help from nurses and assistants, in 14 days the goal was to get through to the armchair by the bed without help, in three weeks time I should be able to stand for a few seconds, in a month to be able to walk, even if conditioned.  What scared me the most was not the locomotive part, but manual dexterity, besides being completely intubated and unable to speak, when I tried to eat by myself, the spoon invariably hit the nose. The hospital immediately made available an occupational therapist who works with manual dexterity and a physiotherapist. They did a fantastic job, it's the biggest compliment I can give, in a week I started writing and doing what we learn as kids and we understand as something trivial, like the simple opening of a can. With every achievement tears of joy fell of my eyes, after a few days I also recovered my voice, which was key in order to communicate with the intensive care team. After a few days I was already asking the physiotherapist to put me on the floor, she thought it was still early, but every night I did extra exercises in bed, outside the hours of physiotherapy sessions, without the therapists’ acknowledgment to speed up the process. They were very surprised by my rapid evolution, all the goals I had set in my head were exceeded well ahead of schedule and after two and a half weeks, when I write these lines, I am already walking without help (even if I look like a robot). Another obstacle to recovery was hospital food. I was being fed by tube and I had to start eating to gain muscles, but the food is not good, I had a very frank conversation with the hospital's nutritionist, we readjusted the diet and what is certain is that even concerning this matter I managed to change my mindset and, although I still don’t “feel” the food, I got to the state of being hungry and I want the food to arrive. The highlight of the meal became pineapple in syrup, something that is unthinkable to have at home and which I have always loathed, amazing how I lowered the bar and I am so satisfied with two slices of pineapple in syrup. Another victory, this one very difficult, but it motivated me even more to move on. 

I am writing this testimony after 80 days of hospitalization, locked in a room without being able to receive a visit whatsoever. I had to make friends to be able to vent and also make those who look after me daily, laugh. Of the dozens of employees who pass by my room every day, I highlight nurse Elodie, Dr. Cristiana, Dr. Henrique and the singular Dr. Miguel Esperança, all younger than me, excellent professionals and incredible in human relations. We have good, long, non-health-related conversations, sometimes distracting them in time, but they have been the friends that I lack, I am happy when they enter my room and I know that they are, too, even if it is due to the evolution of my clinical condition. Unfortunately, I continue to test positive for the new coronavirus, even though I no longer have symptoms, and until I test negative I cannot return to the IPO. At the IPO I will go back to having a chemotherapy cycle and, if everything goes well, I will do the transplant. It is a long and painful process, the whole phase of adapting to a new marrow requires a lot of patience and resilience, but I am more motivated than ever to move forward. I have had several reports of transplanted people who have suffered changes in the palate, the hair has been reborn but is now curly (I confess that I thought it was funny to have a new version of me, afro style), the timbre of the voice changed, among other particularities. I have very specific goals in my head, I want to be at my best possible health state, playing in Portugal and Europe in June 2021, I will be a very happy guy if that happens, outside Europe it will take some more time because I have to take a new vaccines plan as if I were a baby and some of them I can only take two years after the transplant. Today, and even before the transplant, I already feel like a different person, cheerful, super motivated, in a good mood, truly enthusiastic to face this new challenge, and I am sure that this will also be reflected in the music I play. This is another challenge that lies ahead: considering a year and a half without playing, convincing club bookers, festival organizers and foreign promoters to let me play for them, but as for that I am more relaxed, I am aware of my value and if I keep my skills intact work will not be lacking, I am so confident in the future that I have even told my agent which festivals I want to perform in the summer of 2021. To set real, very concrete and well-defined goals in time, it motivates me and gives me immense hope for the future ahead.

Translated from Vogue Portugal's Hope issue, out September 2020. All credits in the original articles.
Texto em português na edição em print