My name is RAZ- Personal

89 images Created 2 Oct 2021

This is a personal project that explores the daily life of my partner Andrea and I while embracing his congenital heart condition and the new heart surgery (his 4th) he underwent in October 2022. The project investigates a wide spectrum of events: from the role photography plays in his life helping him since an early age to see the world differently to his mental and physical struggles before his latest surgery and all the traumas in between from the previous three surgeries, all the way to the challenges of our relationship and how he and I feel about making plans when sometimes all of it seems so unknown.

This project was born from my need to find a way of dealing with Andrea’s heart condition, which was going to become my own as well when I decided to share my life with his two years ago. Once again, photographing his health issue as a reality helped me get closer to my fear and find a way to normalize and accept it. By using my lens as a space holder, I was able to acknowledge the reality around Andrea’s heart condition as just a fact I chose to embrace and build my life around, not just as a frightening truth completely out of my control.

Aortic Coarctation would usually be a deadly heart condition, and it would have been so even in Andrea’s case if his grandfather wouldn’t have happened to be a concerned doctor who caught his grandson’s strange heartbeat when he was 7 years old. This condition can usually go undetected and lead to death. Andrea was lucky enough they caught it and his first open heart surgery came when he was 8. His aortic artery was rebuilt and enlarged, and he went about living a normal life until 26 when he had another major surgery that almost cost him his life: full reconstruction of his aortic arch and aortic valve replacement. Soon after surgery his sutures blew open and he had to undergo a third surgery to fix this. That day, he almost bled to death.

Andrea speaks of it all as a reality he is fully aware, yet extremely scared of. He never overcame the trauma of having been born “this way,” but he kept on living his life as if it was a normal one. He went on and played volleyball and water polo almost professionally, he graduated with a literature degree from the “Ca Foscari” University in Venice and started a career as a freelance photographer. Yet, even so, the feeling of being different from everyone else due to his heart problem altered his life.

“The horrible feeling of having to lay down on those beds, so powerless, so impotent” something he has no control over, and he wishes it wasn’t so. “I have kept my thoughts to myself for a lifetime; it’s a mix of feeling you want to trust someone else with your own life or keep floating solo in the unknown,” he said back in June 2021 in Milan before his first visit to assess the degeneration of his current aortic valve. “These are all emotions that a ‘normal’ person may never know until the day of his death, but I’m so used to them.”
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