Carlos O. Antognazzi
07/17/2020 - 18:45
- Clarín.com
- Society
There is always a project, you can always choose. I write it with sincerity. Even in the last quagmire, we can decide. Shakespeare put it more bluntly: to be or not to be. It all comes down to this.
I kept reading
Don't do everything at once: you can suffer burnout
Society
When we married Luisina we had a family project, but there were circumstances that changed the initial idea. When she was two years old, our daughter was diagnosed with cystic fibrosis (CF), a progressive genetic pathology that affects the lungs and digestive system. The excretory glands secrete thick mucus that attaches to the walls of the organs. In the intestines for example, where minerals and vitamins are absorbed, these elements are not retained. Patients suffer from recurrent pneumonia and pancreatic enzymes do not get where they need to go. These patients must ingest these enzymes orally before each meal . They must also do specific sprays, kinesiology, take medication. And do it every day. On vacations and holidays. And for life.
At the top. Reaching the top of the Champaquí hill in Córdoba was a great achievement.
When diagnosed, the average life span for CF in Argentina was 16 years. Luisina, who is a surgical instrumentalist as well as a poet, knew this before I did. I found out, without anesthesia, in 2009, in a Congress in Capital Federal. I only managed to leave the conference to cry in the hotel hall. I told someone there what he had just heard and he said, "Yes, it is so." Luisina, perhaps wanting to protect me, had endured that atrocious number alone. Suddenly the words, which had always accompanied me in my life as a writer, escaped me, and I could not grasp them.
Zoe. At 12 years old, a huge smile.
When we returned to Santa Fe with other parents who had attended the Congress we made jokes. Tensions and toxins had to be released. Especially me, who just learned about things that others already knew. It seemed unfair to me that Luisina had suffered it in silence, and I understood the value of her silent crying . I did it too, but never with her. He rationalized and told me what he had said so many times to my Literary Workshop students: "Write and exorcise fears and anxieties, get rid of them and you can objectify them on paper." It was so simple when I said it that it hurt me to realize that this simplicity did not work for me. I do not know if for others yes; it is easier to give a suggestion to another than to live it yourself.
Something had to be done. Not only for us as a couple but for Zoe herself, who was the most innocent of all because she did not ask to be born, much less with CF. We had a family reunion and I said the number as I had heard it days before: 16. And I saw the faces of my brothers-in-law, my mother-in-law. And I stated that there was medication, that there were protocols , and that it was our turn and that we were going to do what we had to do. But that we all had to work in the same direction: the context was crucial. CF is not only treated with a kinesiology, medication and nutrition protocol, but with a family accompaniment. Everyone should get involved in the task. The patient, especially when he is a child, must feel in a "normal" environment. In this way, the patient acquires more psychic strength and less defense. Medicine is not everything. Family support and adherence to treatment is the other (big) part.
So we decided not to isolate her: Zoe would live a normal life. She would integrate with the other boys and should be treated like a normal person because she was a normal person. Disability - we learned it again - is more like what separates us, because we are all disabled in some way.
To gain weight, Zoe needed a nasogastric tube. During the night, while she slept, we fed her with a pump that sent a special milk directly to her stomach. During the day she fed like any baby, and she wore the end of the tube attached to her neck with a hypoallergenic tape. Thus she attended kindergarten for a year, the time it took for her body to strengthen. That's how her teachers, her friends, the neighbors knew her. One day, upon returning from hospitalization, Zoe said upon entering the garden "Boys, I'm back!". And she was happy , and they welcomed her with applause. Zoe took it with a naturalness that hurt. We were told that boys adapt faster and better than adults on these issues, and we found this to be true. But we also knew that as that “naturalness” grew, it would change into something else.
We went out for a walk, to enjoy the sun with the stroller, and little by little we were recovering that imagined project. With nuances, with hospitalizations. With discussions with the social work due to the delay in delivering the medications. With requests for a hearing with the medical auditors. With firmness and passion.
At the age of three Zoe was admitted to Santa Fe again. The doctor told us that she was going to refer us to La Plata, to the Sor Ludovica hospital, specialized in pediatric CF. That they would take us by ambulance that night. It was a gloomy trip, with Zoe on the stretcher and the serum in her vein, Luisina and I at her side. We arrived in La Plata at dawn. The first time we went to that city. The ambulance dropped us off at the hospital door, in front of a park. There another story began.
During the two weeks of hospitalization, Luisina stayed with Zoe at night and I slept in a lodging near the Bus Terminal, and relieved her during the day. I came and went walking, about 25 blocks, which cleared me. Luisina slept at the hotel at noon until nap, and then the three of us spent the afternoon together. It was a hard experience. Zoe had arrived very underweight and reluctant. Seeing her like that dejected us. We tried to distract her, we told her stories. The first days were the worst, with a battery of studies and blood draws every morning. Zoe said she wanted to go, she wanted to go home. She missed the garden and her little friends. The girl I shared the room with had another disease (the CFs cannot be together, due to the cross infections they can have with each other), and the shared space did not collaborate. But there was no choice. She felt we were losing her, but then one day Zoe started to participate more and smile, and we with her.
After multiple studies, Zoe was released. That afternoon, before we returned, we went to see the Museum of Natural Sciences, and Zoe saw the dinosaur skeletons for the first time. Feeling the sun on her face after fifteen days of confinement and anxiety rejuvenated all three of us. It was December 23. At her age, Christmas was important. We also returned home by ambulance, but in a different mood. The three of us felt that they had saved her at Sister Ludovica, that they had been right with what the doctors in Santa Fe had not been able to do. Since before I was an agnostic, I did not believe in any deity and even less at that time, but the conjunction of Zoe recovered and Christmas can well be taken as a miracle of those in which I do not believe. The miracle, I know, was the doctors. And Luisina. And Zoe.
Catechesis arrived. Once again I was honest with Zoe: "Religion and the Church do not interest me, but if it does you good, I will accompany you." We assumed the commitment to Luisina, but I was the one who went the most for three years to those strange meetings where I found an opportunity to discuss. And so did Zoe. Questions, reproaches: "Why did God make me born with cystic fibrosis?" . I told her that I did not know, that I did not want her to suffer this pathology either, and that if I wanted to deny God, I would. That I didn't believe in her existence so I didn't even have the freedom to insult her. And that you had to take life as an adventure.
"The important thing is that we are here," I said one day. “We have this, and we have a choice as to what we do with this. We can grieve or rejoice. But we can live as an adventure where we discover things at every step. If we have a duty, it is that. It was your turn to take CF and take medicine, and I also take mine. Each one has its own condition, and we may not like it, but it is what we have and we must take advantage of it. And enjoy the little things. "
In March 2018 I had pneumonia that brought me down with antibiotics. I recovered and in May with a friend we trekked to Pueblo Escondido, an abandoned mine in Córdoba. It was not a demanding trek, but I experienced it with the freedom of those who can breathe again. During the illness I understood how someone who cannot breathe everything they need feels, that rubbery, constant brake. My daughter suffered daily what I did those two weeks. But Zoe was growing well, stable. He was swimming, he had grown strong. We continued to travel to Sister Ludovica twice a year to monitor her, and we continued with the doctors in Santa Fe. But we lived normal lives. With protocols, but normal. Atrocious 16 had become, thanks to advances in medicine, the most optimistic 45, or more.
We have not been hospitalized for four years. Occasionally Zoe gets angry, fights with the kinesiologist, "gives her a vacation" so that she doesn't come for a few days. But we talk and understand that we have to continue, that if we have been successful up to now it is because we all make the effort. It tells me that I don't have CF and I can't know it. I tell her that she is right, but that I am there with her, just like Luisina, and that we accompany her and that is why it is as if we had her because she is never alone. CF is a constant struggle, a commitment every day. There is no truce, it cannot be loosened. Zoe knows this, but sometimes she complains because she was born that way, and says "I don't want to die . " I tell him neither do I, but that is normal. “Plants die, pets, ourselves. What matters is what we do. We go through a cycle and then fall asleep. ” Adventure again. The carpe diem . In the end Zoe understands and accepts it, at least until the next crisis. Adolescence is the great stumbling block. The coming years will be difficult, but we have hope. Zoe has tremendous maturity and a sense of humor, and that will help.
We enjoy life outdoors. In November 2019, the three of us went to Córdoba once again. But now with the sleeping bags. We went up the hill to the Lindero hill, in Yacanto de Calamuchita, and from there we made a short trek to the summit of Champaquí. Zoe debuted her 55-liter backpack. The plan was to sleep on the highest peak in Córdoba. I have longed for it since I first went up more than thirty years ago, and now I could do it as a family. We reached the summit at noon. I took many photos, recording the variations in light during the day. Zoe saturated 99 (that means that she was able to breathe normally and that oxygen was comfortably reaching her body). We slept in a small shelter there, tight but happy. On the morning of Saturday the 16th I prepared the tripod and took a photo with the sun illuminating us from the front. There was nothing higher than us, we were alone and happy, living the adventure.
I keep writing. This year a new novel came out. Zoe went from Harry Potter to Stephen King, now advancing with Tolkien. Luisina published another book in 2018, and she has more poems in her portfolio. The story of our resilience can be focused on that summit and that night sheltered from the bags. There will be others, because the adventure continues. This year we are locked up by pandemic and quarantine, but Zoe wants to return. In November he turns 13, and we told him that when he could travel we would spend the night there again, next to the stars. Because there is always a project. You can always choose.
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Carlos O. Antognazzi was born in Santa Fe in 1963, and resides in Santo Tomé. Writer and photographer, lover of trekking and the outdoors. In his youth he was a swimmer and practiced canoeing. He published 26 books. His latest novel is "Chimerical Principles" (2020). He obtained scholarships from the National Fund for the Arts, the Government of Spain and that of Venezuela (the last two allowed him to travel to those countries). His novel "Señas mortales" won the Tiflos Award and was published in Spain. He also obtained the City of Huelva short story award. Coordinate literary workshops. When he can, he changes the computer for the backpack, and goes camping with Luisina and Zoe.