My name is Danijela and I wanted to tell this story to you in the form of an interview which I gave for a one health portal. All I want is for this story is to inspire you that your hardest times often lead to the greatest moments of your life.
PHAE Leaders Stories: Danijela Pešić (PHA Europe)
Struggle and the constant battle are one of the life mottos of Danijela Pešić who is living with a progressive, rare and severe disease – pulmonary arterial hypertension. Once only able to cross ten meters without getting severely tiered, she now managed to successfully cross a whole 6 kilometres race about which she dreamed her entire life.
‘’No one holds the right to eternal and complete health’’. She told us.
Danijela says that life is diverse and beautiful.
– Nevertheless, it’s a fact that the only certain thing in life is death. This naturally occurring event of cessation of functioning of one’s body would have never been possible without the fact that the body in itself is one fragile creation prone to many changes and mutations, which depending on the nature of many processes in our bodies, but also depending on so many outside factors could in one point in time become pathologic in their nature. Sometimes, that manifests as the sudden appearance of some symptoms, but it’s more frequent that the disease is lurking from the dark for many decades, waiting all that time without any noticeable symptoms to insidiously develop and attack. That could best be explained by old folk saying, “How for god’s sake that happened, he or she was healthy, and death came so suddenly”. None of us has been granted health as an unlimited resource that we can spend freely without any consequences. We are only provided with a certain amount of time, which is sometimes so short and is measured in months, and in most cases, it is measured in decades, and for those luckiest of us mortals, it can last up to one century – she starts her incredible story in a bit cruel manner, but she is quite rational.
‘’I’m – a person before everything else, and only then a patient suffering from PAH’’
Who is Danijela Pešić, before we come to the fact that she is at the same time a patient suffering from a rare disease?
– I m a writer, columnist, humanist, fighter for ecological and human rights, I’m an economist, sister, cousin, I’m someone’s love, someone’s desire, lover, I am president, philosopher, social critic, a friend, and an enemy, and at the very end, I m a patient – with a great inspiration she listed all this and explained why everything that she has listed above is important in the social context.
– The last role that has been imposed on you is only relevant to our society and based on people’s short screening of the wholeness of your being, only your last “(pre)occupation” echoes in the ether of other people’s being – “patient…patient…patient”. In my case, it’s a congenital heart condition that caused another condition called pulmonary arterial hypertension. PAH is a very serious, progressive, rare, and deadly disease. It generally affects young people and children. In 90 percent of cases, the cause of this disease remains unknown. PAH patients are often described as disabled persons invisible to others, and that is so because it is a disease that causes a decreased flow of oxygen to the heart due to constricted blood vessels of the lungs and pulmonary artery which is an accompanying element of this very complicated state, all that pretty much prevents individuals from leading a normal life. These seemingly healthy persons are dealing with a constantly present sense of chronic tiredness, they barely tolerate even the smallest physical strain, and their disease is so progressive that without adequate therapy patients can live no more than three years. Due to the lack of oxygen in the lungs, the right hearth ventricle gradually becomes hypertrophic, and eventually, the patient’s heart gets so worn out and enlarged that the only outcome is unfortunately death. Death from PAH is more frequent than death from most invasive forms of cancers. To permanently and completely cure PAH, one should undergo lung transplantation, and very often it is also necessary to do complete transplantation of lungs and heart together –that’s how Danijela describes the disease that she is living with.
“Doctors whispered that I’m going to die”
Danijela goes back to the time when the doctors estimated that her life would end in a matter of days and she was waiting for that grave outcome in the small room of the University Clinical Centre of Serbia.
There was no available therapy for PAH in Serbia until the past several years. Doctors were whispering that I was dying. While connected to all the machines and the oxygen, I was thinking that someone who has never seen the see and who never woke up next to the loved person cannot die. I was sure that someone like me who was so eager to live was not going to die. When you are among those rare individuals who spent their whole lives living with a serious disease, your primary character is necessarily replaced with the new and different character, the one forcefully developed under the pressure of difficult life situations and circumstances.
Pride disappears in front of raw gasps for air, and your whole being gets degraded to the level of instinctual behaviour like that of shrivelled-up and afraid insect. When that kind of fight lasts for more than 20 years, followed by social isolation due to the inability to cross more than thirty steps without suffocating, when you leave the house only when you need to go to ER, and when all the doctors there are your only acquaintances and friends, then your spirit and your whole being have only two ways or paths that it can take. One is self-destruction and complete surrender and the other is spiritual growth, endurance, and patience – she patiently explains.
She sheds new light on a word that has been mentioned several times by now in her incredible story.
Patience (patient) – to be patient in trouble and in suffering – to be a patient truly.
Thirst for knowledge, Dostoyevsky and other minds as medicine and then – as a true cure!
That situation has, inevitably, made our collocutor different. And yet again, as she has told us, she was craving for knowledge, hoping that it will bring her some relief, consolation, and answers to many burning questions.
– My life was reduced to one small room with a large library and a window looking at the grey wall of our neighbour’s house. I spent years next to that window reading everything I could get my hands on. I was comforted by the works of Dostoyevsky, Turgenev, Kierkegaard, Aristotle, Anais, Plato, Seneca. They had solutions for all my dilemmas and for a fractured clarity with which I have perceived the physiological cruelty of the physical body. All those endless shelves of books brought peace into my soul. Writers, philosophers, anthropologists, travel writers, wise people, have shared their experiences which I later shaped according to the preferences of my spirit. In the summer mornings, I would often wear headphones and play the sounds of sea and ocean waves. If my body was unable to travel to all those beautiful places, then my soul wasn’t. And my soul has indeed travelled and has shared opinions and experiences with the greatest minds of past centuries, at least in my imagination. There was not a single day without a health crisis and I was always walking on a thin edge of death, there was not a single hour in time when I could know whether I’m going to be alive tomorrow – she remembers.
Merciless suffering came to an end in that same room in the Clinical Centre of Serbia when the clinical trial drug found its way to Danijela to her complete disbelief and in the moment when she was in total denial of her mortality. She had nothing to lose and decided to start with that therapy. The very thing her family, doctors, and herself longed for in secret has finally happened.
The medicine proved to be effective.
As soon as she got out of her sickbed and when her longing for water and daylight was again finally awakened, she said, that nothing again would exactly be the same.
She founded an organization whose main goal is to fight for other patients and promised to herself that no one else will ever need to go through such existential challenges alone.
The result, five years later, is that she fought and won a battle for 7 therapeutic procedures and for surgical procedures abroad for a thromboembolic form of PAH (the only form of PAH which could be treated and cured surgically).
No, she didn’t count the number of saved lives, instead, she mourned every single life that they have lost to this difficult condition.
–From my own experience of decades of life with PAH, I’m serious when I say that PAH is not a diagnosis, but a professional killer. My task is to successfully win a fight against this cruel murderer with a team of experts, decision-makers, and friends. I’m aware that the heart in my chest is like a time bomb and it will eventually end my life at some point in the future. However, before that happens, I’m tirelessly working on improving the quality of life of patients suffering from PAH and other rare diseases, my goal is to improve it as much as we can and to bring them all the dignity and hope that they have lost. That is hard labour. Work with administration, state departments, tons of papers, and laws often turns in a long fight of titans against us patients, small but stubborn fighters for human rights – she says.
Danijela Pešić is extremely active in the fight for the rights of other patients who are living with rare diseases like PAH.
– However, from that point on, my life became completely different. I have started to truly live. To travel, to walk, to meet new places and people, to advance, at first slowly and then rapidly. All the knowledge that I have gained, through learning and spiritual growth, which was my mechanism to escape the cruel reality and to try to avoid the thoughts of my finality, suddenly became applicable in real life. I have successfully finished my first sport race and was awarded a medal, I’ve stepped into the ocean, with my bare feet I was walking in the rain, I have conquered mountain tops, and alongside all that, I was constantly fighting for the rights and the lives of other patients. After two-year term as president of National organization for rare diseases, I have become a member of the board of PHA Europe, an association that has brought more than 30 countries under its wing. Today, I’m president of that very organization, and with my example, I give hope to everyone who falls under the weight of disease and a weakened mental state which gets weaker and weaker when facing death becomes a routine. I have written 7 novels, created my own portal for culture, worked as an editor of European journal for medicine, have travelled half the world, was awarded several European awards, and I have spoken at many world conferences – it seems like there is no end to all her activities.
Her decade-long experience of life with PAH made her declare that this disease is not a pure diagnosis, but a professional killer. Exactly because of that reason, her fight and battle never stop.
– My task is to successfully win a fight against this cruel killer with a team of experts, decision-makers, and friends. I’m aware that the heart in my chest is like a time bomb and it will eventually end my life at some point in the future. However, before that happens, I’m tirelessly working on improving the quality of life of patients suffering from PAH and other rare diseases, my goal is to improve their lives as much as we can and to bring them all the dignity and hope that they have lost. That is hard labour with many obstacles. Work with administration, state departments, tons of papers, and laws often turns in a long and tiresome fight of titans against us patients, small but stubborn fighters for human rights – Danijela says again.
This brave woman speaking to us without romance, but with spiritual peace and enlightenment.
With that said it’s quite clear that – Danijela is not cured.
–I am much better now, and my will, together with my unquenchable thirst for life, beauty, and small miracles have enabled me to make huge steps. Someone who was forced by life circumstances to carry a sword and to battle with death itself, cannot be afraid to step into an unknown zone, for that person, safety zone lies in the courage that can often be misunderstood for lunacy – says this brave woman.
But she remains aware of the fact that time always triumphs over us.
– That’s how it needs to be. That is the nature of things. As soon as we understand that we will be at peace with our thoughts and we will be happy with the world around us. I don’t like to romanticize and to be pathetic. Death is not an enemy and something to be afraid of. It’s rather more like final liberation. That final tranquilization of one’s ego, fears, and pains. Death is another face of life, a face that is liberated from vanity, pride, and materialism. All states in life are transitory and fleeting. Rationality is a beautiful tool but only if you know how to use it. I’m still learning that. It is quite difficult to overcome yourself and to paint this world with the colours of reason which keep us grounded in the real world – it is as if she talks on behalf of all of us mortals.
Danijela keep a unending battle against all taboos.
Not only from her personal experience, she came to the realization that disease, in general, is still one big taboo topic in Serbia, and persons who have any issues with their health, are often regarded as less valuable by people around them.
Danijela Pešić
–That is even more noticeable when you are a woman. Beauty, success, intelligence doesn’t mean anything then. In our current society, globally, you are in the eyes of the opposite sex only an organism with the uterus. In case if it’s risky for you to become a mother or if you are unable to realize yourself as a mother figure for any other reason, you are often treated with disrespect. You don’t have the right to adopt a child. You are discriminated against. Where there is triviality in charge, the reason is unable to make a difference. When you are reduced only to a reproductive organ whose only function is to receive a fertile seed, you are then simply perceived as damaged good. In a situation when you wake up from sleep with a tube for oxygen in the intimacy of your room, as oxygen is an essential part of therapy for PAH patients, then you are not a woman or man, but simply a patient. When you show any signs of weakness, fear of others drives you away from them and you become unwanted and rejected. In the moments when your youth automatically switches off any sense of compassion from others, and when they refuse to let you before others in a queue, or they refuse to stand up and let you sit instead even though you clearly said that you are sick and not feeling well, in a situation when people look at you with disdain because you didn’t let a pregnant woman go before you in a queue in front of the post office, because that was something expected of you as you look strong and healthy… In grim moments when crowds of insensible people point at you branding you as a weak, fragile, and at the same time lees valuable person, in all those moments when you need to fight your battles with the strength of ten men, then your mind needs to be stronger than the average one, in those moments your heart can not stop whatever the odds, because you suddenly realize that your disease is in so many ways healthier from all the health of certain individuals who cannot see you in any other light except as a patient, weak and on the verge of death.
Diseases will stop being taboo once we all realize that we are all patients. And we are – we are all patients – but as it turns out not all of us are humans (humane) – that’s how Danijela Pešić concludes her incredible story, with strong messages for all of us to think about.