Hello everyone, I’m Tania Cicognini, I’m 34 years old and I’m a pulmonary hypertension patient. Today for the PEP Talk I wanted to talk about how to cut away the superfluous and cultivate what’s essential.
Before the illness it was difficult for me to stop, so I ran without pause, I worked incredible shifts and I filled my days with commitments so I wouldn’t have to be, so to speak, alone. I went out without really wanting to, I had very empty and very superficial conversations. I didn’t want to enter into the depth of relationships and conversations. My life revolved around work, work, work. Before the illness arrived I was a pedagogical educator who worked in communities with minors who had been removed from their families due to serious problems like abuse and mistreatment. For ten years that was my life, in which I concentrated only on work, whether I felt well or unwell. That was the only priority and consequently everything else took a back seat.
So once I left work my favorite hobby was scrolling through notifications on my phone and having very fragile relationships.
Then in 2021 the illness arrived. I had already been feeling unwell for a couple of months and having a family history of this disease, because my mother also had pulmonary arterial hypertension and passed away in 2001, I was a bit afraid to face reality. So I acted like an ostrich, putting my head in the sand because I was afraid to confront this illness again. So I spent a year in which my body started sending me signals but I left them there pending until July-August 2021 when I started having much more serious symptoms where once again I pretended nothing was wrong, so I took cortisone, I took antibiotics because at that time I was working with children who had caught strep throat, and then one day in mid-September I arrived home and the moment I opened the door I collapsed to the floor.
So there I had to start looking with different eyes at that strange sensation I had inside me. After two weeks of tests they diagnosed and finally gave a name to this malaise of mine and there I was facing pulmonary arterial hypertension again. Strangely, and I always say this, with the arrival of this illness I was, pardon the expression, saved because since I became a patient I started to understand the value of things, the value of life and the value of the relationships you have in your life.
And at a certain point I stood in front of my mirror and I asked myself, Tania, is this really life? Is this the way you want to live? And facing that question asked in front of that mirror, the answer that came from within me was no, I want to have important relationships, I want to have relationships that go beyond the surface, relationships that are deep because when everything is going well you don’t notice the value, but the moment your time starts being questioned, the fact that you can be here for X years, everything that before probably seemed superfluous now takes on an important value.
You also understand that it’s important how you live the now and the fact that you don’t really know what could happen tomorrow, but the fact that you already know you have an illness makes you believe even more in what you’re doing because unlike people who are, pardon the expression, healthy without illness, they paradoxically have the ability to think I’ll do it tomorrow, and that’s a bit what I used to do, okay I’ll do it tomorrow, tomorrow I’ll send a message to that friend of mine, tomorrow, tomorrow, tomorrow. But the moment you have the reality thrown in your face that you have a serious illness and it’s true that with therapies you can live a long time and have a normal life, it’s also true though that this illness develops easily and that you might not have that tomorrow, so you get a bit of fear of what you haven’t done but could have done.
And so it’s a bit like you now want to enjoy those things you took for granted. Trivially, since I’ve had pulmonary hypertension I enjoy Christmas much more because I know that every year is a gift, it’s a present, the fact that I can be there living Christmas day with my family, my partner, my niece, and it’s not at all taken for granted. So everything takes on a much more beautiful and important value and above all you realize that time is never enough because it seems like you have a lifetime ahead and then in reality you discover that the next day can be interrupted without warning.
It happened to me before summer, I had seen my hairdresser, she was a mother, she was a 37-year-old mother, Lucia came to cut my hair and with her we talked about dreams, desires, the future and we had promised each other, or rather we promised each other because fantasizing about the future there was the idea that you’ll be the hairdresser who does my hair on my wedding day when and if my partner asks me to marry him, and so we laughed and joked. I left for vacation and one day I read a post that I never would have expected to read, I read that Lucia’s sister was announcing her death. So there it was a bit of a blow, a low blow from life in my opinion because there were so many dreams to realize, there was a life to redeem and there was an elementary school child who still needed his mother, and you understand that at that point time is never enough. So it’s never enough to say I’ll do it tomorrow or to say tomorrow I’ll tell that person I love them because it may be that you can’t say that I love you or they can’t receive it. And so it leaves you stunned, so as I was saying, time is never enough, so there may not be a tomorrow.
And precisely over time I learned that ultimately emptiness is in itself a gift because it’s that space that allows us to get in touch with what matters. I started cutting away what for me was superfluous, what for me wasn’t worth the time, wasn’t worth my time, and I started saying no to certain things that made me feel bad, things that before, probably for everyone’s sake, I continued to say yes to and accept.
I’m learning, because saying I’ve learned is still far off, but I’m learning to leave behind what in my present and my future doesn’t have importance at the moment and that at the moment I don’t need to carry with me. And since I left the door open I discovered a strange lightness because before I had weight, I always had that sensation of having to meet others’ expectations, of always having to be one step ahead, and instead I understood now that I’m not interested in always being one step ahead. I want to enjoy my time, my moment, and if in that moment my body, my head tells me you need to stop, I’m not interested in going forward, I want to enjoy even that moment in which my body is telling me, is asking me, Tania let’s stop.
And doing this, listening more to myself and limiting my time to those who really want to dedicate it to me, I’ve expanded time for people I love, so those who laugh with me, who laugh with my silences, who laugh with me in moments of joy, who laugh with me in moments when at a medical visit trivially news arrives and the next time an answer comes, no maybe there’s the time when at a checkup the illness is stable so everything’s fine, and there’s the time when the illness has instead progressed slightly, and so in that moment you really understand who are the people worth having in your life and it’s not for everyone because time is an act of love, it’s an act of love for ourselves, toward ourselves, but it’s also an act of love for other people who dedicate it to us. And just as others deserve my time, I also deserve my best and above all I deserve my time because everyone’s time is not the same time, so it’s right and important that everyone goes at their own pace.
And the invitation I can make to all of you is to start cutting away the superfluous, start cutting the cord with those things that at the moment may be important but in reality once finished leave you with nothing, because if you have to have superficial relationships, if you have to have superficial conversations and once finished you go home empty, it doesn’t make sense because those conversations should fill you, they should make you want to say damn, what have I been missing all these years. And it’s important to cultivate what nourishes because a chat with a person that stays on the superfluous, that stays on the superficial, will make me remain on the importance of the superfluous and the importance of emptiness. But if I start cultivating a chat over an aperitif with a friend and in that chat I come into play, I truly enter into relationship, I’m nourishing myself to love and to let myself be loved and I’m nourishing myself to have my time respected because in that time I could have been on the couch by myself and instead I decided to dedicate it to someone.
Because time doesn’t accumulate, you can’t buy it, you can’t save it, and time, as we said before, we think we have so much of it but then it may be that the next morning you don’t have that time anymore or the person you’d want to dedicate it to doesn’t have it anymore, because time is now, that is, we have to live it in this moment. And it’s true that it’s limited time because through the eyes of someone who is ill it can be limited time, but it’s also the most beautiful gift we have because there are those who would like to spend one more Christmas with their relatives and maybe can’t for many reasons, or there are those forced to stay in a hospital room who would like to go for a walk in a park. Well, we who are fortunate enough to be able to do it, we must do it, we must do it for ourselves because in our place there would be someone who would want to do it and can’t.
And so when I manage to give my time to my friends, to my family, to my partner, it’s all time that I gain, so I don’t lose it but I gain it and it makes me feel good and will continue to make me feel good.
So this is my invitation to you, start living your time and growing it and nourishing it together with the time that others decide, will decide, decide to share with you, because what’s important is nourishing ourselves and nourishing others.