Intimate worlds For my illness, I denied love: a friend told me that cystic fibrosis was my partner and she, only my lover – 27/04/2019

The love with a woman is a complex adventure that comes to visit me from time to time and I do not finish driving. I prefer to say it now, falling in love paralyzes me, keeps me motionless and it scares me. Among all the strengths that I have known, the one that has marked my life is called cystic fibrosis: it is the disease that has accompanied me since my birth. With her I have a respect? Authentic, I do not live to complain, I do not require anything. It is an excessive relationship, risky, selfish and fraught with pitfalls. I always want to go further. Until now I could. Can I in the future? Love with a woman is something much more complex. And I do not exaggerate. My relationships collapse when the power of cystic fibrosis appears.

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Even though my illness is moving on and off, like a continuous avalanche, I feel able to live with it, but I know it does not allow distractions. I do not wish it to anyone, but it has touched me and I accept it. The moments when I remain motionless are the worst for my head: I feel that I do not live. I know so much about cystic fibrosis that I can be calm, but suddenly she invades me with the many catastrophes she causes in the body.

It is a genetic disease that damages the lungs, pancreas and other organs due to excess mucus that can not be treated. Until a few decades ago, those who suffered in developed countries – lack of local data – died of children or adolescents. In the 90s, we started talking about a 25 year wait. Today, 40 years old. In secret, we all bet on more … Doctors warn me of their difficulties, but I choose to spend time to be as good as possible. I do not want to live in their shadows. I decide that she follows my steps. The body always tends to deteriorate, but when it moves, the process is slower. That's why I run, that's why I swim, that's why I play. In journalism, in love and in life. That's why I've created a foundation, Fiqui Secret, that spreads the benefits of physical exercise in different diseases.

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Mercedes, although I miss you to say that Mechi was my first girlfriend, we met in high school at 16 years old. These were times when I thought that no one could fall in love with me because I had a chronic, severe and incurable disease. The reality is that this has rarely been mentioned with Mechi. It was a taboo subject, so she called me cystic fibrosis, it made me very angry. I had to hide it and deny everything. In my refusal, there was a kind of pain that was difficult to interpret. Sometimes in excess. We have been together for nine years and I doubt that this time is again involved in a relationship.

There is a reality: I have never imagined living beyond 40 years. Today, I am 34 years old. Will this self-fulfilling prophecy ever accompany me, this is my due date? My biological clock has less time than most. Sometimes I think I will live longer. It's a lie, I tell myself. I always lie to myself. It hurts me to think that I am going to die young than the unrequited love of a woman.

It's hard for me to enjoy, I do not know how it's done. Mechi tried to teach me how to appreciate the little moments. "Do not complain and do not realize how healthy you are," he repeated, as my tantrums were exhausting. All the love I can offer today, I owe it to Mechi, she was my mentor. He has always encouraged me to communicate my experiences with the disease, giving him a more positive outlook. I remember one day, he said to me: "I know yours, when you want, tell me". And sometimes I still do not know how to have to present my illness in society. I am aware that cystic fibrosis is a problem and that in naming it, they will not see me worse or better, yes, different. And I fight with that.

With Mechi, I never knew how we got to that. How could I know if I was in love with her if I was the only woman of my life? That's the question I've always asked. In 2010, I made a trip to Spain for two years. They proposed to collaborate on research on the disease and to disseminate it through sport. I was 25 years old and a compelling need to love in other regions, in other cultures. That's why I left and I found the perfect justification for leaving Mechi. By the time I write, I find that this trip has helped me realize my first fear of love.

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Of all the barriers and difficulties that my cystic fibrosis presents every day, there is one subject that I have always tried to avoid and that I look at from the angle of the eye: the reproductive system and its functions. I never worried about the problems that it can cause me. When I was fourteen, my doctor asked me he wanted to do a study to find out if he could have childrenI answered no. I argued that it was still too early to think about children. And today, I think the same thing. I remember these fights with Mechi, she even forced me to do this study to which I always refused. And I still refuse. The badysis is that I have to go to a laboratory and put my sperm in a bottle, which biochemists will study later. I guess it does not take more than an hour. I think there are more interesting topics in cystic fibrosis than having children.

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Every day, I hope to find a woman who touches me. Sometimes it happens. And it is there that I think about everything. The relationship that I have with my illness is so strong that I have trouble imagining myself with a woman. I am aware that Cystic fibrosis is my protective shield for not taking care of my failures of love. Or the fear that it gives me to start a relationship and not be able to pursue it. Or will I be afraid that they will not take care of me?

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It would be necessary for a woman to answer for all the loves of my existence. Manuela, even though I escaped to tell him Manu, was the best of my loves. And it only lasted six months. This is an actress, she's a dancer, she's the woman I always talk to, I write her and we get together for a coffee. A friend in common introduced us, I met her in 2013 during a rehearsal of a musical. This trial lasted about five hours. I saw her to see that I fell in love with her pbadion. From Wednesday to Sunday, I went to see her at the theater, at Lola Membrives. I went there with my notebook and I wrote some ideas, I played to write to him, but the more I played to be in love. And I was really. I was proud to see her enjoy. One afternoon, I regained courage and I called her. I invited her to dinner, it was a Monday in June and the next day I went to work in Brazil. I thought he was going to tell me no. He accepted the invitation, to my surprise.

After five minutes of dinner, I say, "Sit here, next to me." I hugged her, she let herself kiss, then she hugged me harder, we kissed, we smiled. He watched me steadfastly and said: "Look, I'm not mine for one night". I stayed with her and went to Brazil without sleeping. From there, we spoke every day and with each person who met me in Rio de Janeiro, I told him about Manuela, his way of dancing, his brilliance on stage, his charisma and of all that he had to learn from her. . Especially when it comes to climbing a stadium and telling stories.

The day I introduced Manu to my family, we were going to eat and they called me on the radio to see if I could go there as a columnist, this should already be the case. Without hesitation, I left it with my family at the restaurant and I promised him I would come back soon. I returned at one in the morning, they had eaten until dessert. I noticed a very sad look on her. A few days later, I had the chance to go to Ecuador unexpectedly, to also give lectures and record documentaries. All related to the spread of cystic fibrosis. I like sharing successes and problems with people who do not know how to confront them. I was thinking of going for two days and I had to stay three weeks. I never let him know that he had arrived. My excessive pbadion for living fast is sometimes my worst enemy. And he's tired. "It hurts me that you never have space for the couple. I accept your illness, but it makes me feel that I am your love, "she told me.And he was right I still think about it, her love with me was true.In 2015, I'm sure I had the most difficult relationship I've ever lived in. And I love living with this challenge, it makes me forget about my illness.With Lorena, we created a sky that threatened to trigger a storm at all During a trip to Mar del Plata, I confessed to it.On the car stereo, I put a CD in. There was an interview in which I told all the details of life with cystic fibrosis.

She listened carefully, not understanding the situation. Lorena had the privilege of being the only one to let me into an office. Where the strongest questions are discussed. He has witnessed my discussions with my doctor, my disobedience, but also my strict and rigorous method. "I will not lie to you, I would have preferred that you do not have this disease"He once said to me. And maybe he's right Many do not tell me, but I'm sure that they think the same thing.

Over time, we built a relationship requiring additional energy consumption. Until the day we could not and we did not want anymore. It was enough to watch us to provoke a tsunami. With her, I experienced what it means to be immersed in a toxic relationship. Can you break out of such a relationship? Yes, with a lot of self-esteem. Recognizing and moving away from a harmful love to health requires a lot of effort and tenacity. And sometimes, life creates a setback as the order of priorities changes. Anything that happened to me Maybe because I learned from my parents that love was like that: fighting, conflict, talking. Until the day they could not do it either.

The love with Lorena lasted almost two years. Finishing was a bleeding wound that no one saw. To privilege my health, I preferred never to argue with her. I confess that I have rarely done it. The day we separated, I called her on the phone and said, "We can not go on like this."

With illness, I know that I have done extraordinary things, but in my private life, I do what I can. It's Monday, it's April and it's at that moment that I turn to the art of hopeless laughter, like looking for an escape. There are days that I am unbearable. It's an internal movement that goes through me and does not leave me motionless. That happens to me now, while I write. In my head, I am visited by many people, projects, places, loves. I am immersed in stories that I must tell. Sometimes it's infuriating.

I continue to somatize my lack of power to love a woman because I do not want to lose the love of my illness. I consider myself better at living with cystic fibrosis, as if I was falling in love with a woman my illness hated me for having moved from the center of the stage. As if neglecting it meant giving him room to take more of me, to hurt me more. I know that to be good with her, I need more imagination every day. Sometimes I look in the mirror and tell myself that I do not want to die before I play it for someone. Make love today is very easy, the hardest part is to sleep with someone and to be able to rest. My doctor tells me to rest more because the disease is exhausting. I tell him I do not know any other way of life. And I do not like to sleep, because it's like being dead. I escape for a restful rest. If cystic fibrosis causes me to die prematurely, I want her to be alive. There are days when I reconsider everything. Fortunately, these days are rare. And sometimes I have a lot of shortage. I think of myself without cystic fibrosis and without love: I can not imagine living without them.
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Marcos Marini Rivera. I am a journalist, above all. Live to communicate. Knowing each other is what I love the most. I studied at TEA and I completed a Master's degree in Journalism at Di Tella University. I collaborate in different graphic media. I was born in Santa Rosa, La Pampa. Buenos Aires is the place where I choose to live today. Sometimes I still think about going back to Madrid. Shortly after my birth, I was diagnosed with cystic fibrosis, a genetic disease with a poor prognosis. Is this why I am pbadionate about life in danger? My dream is always to be a war correspondent. I know we are going through and we do not know what can happen to us. All this led me to develop more sensitivity and empathy when I was talking with the different protagonists of a story.