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Narrative medicine experienced by a journalist

I will tell you about my illness

 Ti racconto  la mia malattia  DCM-006
01 June 2024

Red 32. This was my identification code at San Camillo, the healthcare facility in Turin specialized in rehabilitation. The hospital wards are given names after colors: Green, Yellow, Lilac, Azure, and indeed, Red. The number 32 was my bed number. Perhaps a way to add color to the lives of patients with impairments and disabilities, many of whom had valid reasons to look grimly on life, at best in shades of gray. It might seem like a childish way to deal with suffering, but the Camillian fathers know what they are doing.

They have known it since 1586, when the “fellowship of good men” gathered by Camillo de Lellis obtained approval from Pope Sixtus V, and in 1591, Pope Gregory XIV sanctioned the birth of the Order of Ministers of the Sick. As established by its rule, the Order is dedicated “above all to the practice of works of mercy towards the sick” and ensures that “man is placed at the center of attention in the world of health”. They were specialized in caring for plague victims. They died in scores. Women were not there; for once, the care of the sick was not solely their burden; however, the Daughters of St Camillus were founded in 1891.

Faith is a gift, from that God “who brings down and raises up, who afflicts and consoles”, as Manzoni says. It is a gift that asks for a gift in return, a restitution. Also in the form of a testimony, I believe. And so it is.

My name is Alessandra Comazzi. I am a 67 years old journalist, from Turin, and I am a neuropathic. I used to work in entertainment; I was a television critic for a newspaper, La Stampa. Now I am mainly focused on learning to walk again and relearning to use my hands. It is quite an emotional leap as well. Because there is, faith, of course, but then there is charity, and hope. The three cardinal virtues. In addition, I have learned that perhaps, in certain difficult moments, hope is indeed the most challenging virtue.

It was January 7, 2023, a Saturday. I felt weak in the legs, during the week I had a bit of a cough. I thought I was coming down with the flu. That evening, my husband Giorgio and I (we do not have children), had dinner as usual. Afterward, I remember, we watched a movie on TV, it was Spielberg’s then latest, The Fabelmans. At around 11 p.m., we had finished watching the movie, but when I tried to get up from the couch, I collapsed. I could not stand up. Giorgio said, “This isn’t good, let’s go to the Emergency Room”. By the time we got in the car, I could not even fasten my seatbelt. By the time we arrived at the Emergency Room of the Mauriziano Hospital in Turin, I already needed a wheelchair.

The process had begun. When a doctor asked me for my documents, I, who had not yet understood what was happening to me, tried to get up to get them from a nearby table, and I fell to the ground. Hours passed during which tests were administered. With the cerebrospinal fluid sample, the diagnosis arrived. I had Guillain-Barré syndrome, which is an acute polyneuropathy, a rare autoimmune disease that I had never heard of. The immune system, for unknown reasons, fights any virus present in the body by fighting the body itself. In this case, the sheaths that cover the nerve fibers. The brain can no longer transmit signals to the muscles. Paralysis follows. And so, at 8 p.m. I was eating spaghetti, at 9 p.m. I was watching a movie, and at 6 in the morning, I was tetraplegic. You know the French movie The Intouchables, the one where Omar Sy takes care of tetraplegic François Cluzet? Well, like that.

Meanwhile, the paralysis was creeping throughout my body, of which there was a danger that it would also block my airways. The anesthetist was ready to intubate me. I had a crooked mouth and I was slurring my words. Plus, intense pain in my back; but I was still lucid, albeit unaware of the actual severity of the situation. Promptly transferred from the Emergency Room to the Neurology department, among the tubes and machines (the National Health System saves our lives), the administration of the “antidote”, the immunoglobulins had immediately begun. If I managed not to die immediately, the disease would be reversible, but very long lasting. We need to be clear about the concept of reversibility. At first, I thought reversible meant going back to how it was before. But no. I am living with another me, even though, in this abundant year, of which five months were spent hospitalized (one in the hospital, four in San Camillo, in bed 32, on the Red ward), I have gone from total immobility to a wheelchair, to a walker, and now to a cane. I continue to undergo a lot of rehabilitation, there is progress, but at an exasperatingly slow pace. At 67, it is not like my muscles dart around like little serpents. It’s a struggle.

I have learned many things. Like now, the Last Rites are called the Anointing of the Sick. The chaplain at Mauriziano offered it to me almost timidly, and I accepted it joyfully. No fear of dying; instead, much suffering. My body was an immobile sarcophagus enclosing the soul, the brain. I was unable to do anything. Move, eat, wash, or go to the bathroom. In that phase, as the doctors explained to me, adrenaline, the instinct for survival, gave me strength. Faith also gave me strength. I understood what it meant to entrust oneself, a word that has the same etymology as faith: where people are literally helped to get back on their feet with an approach of great professionalism, but also of availability, of participation. I heard about narrative medicine. Listening to the patient, a different approach to care. Care as in “taking care”. Because if it is difficult to face the acute phase of the illness, what is even more challenging is living with its chronicization. That is why it is important for the patient to be consulted. Their narratives are important.

Mine is a simple testimony; I don’t have technical or scientific expertise. In this journey that is not only rehabilitative but also one of faith and gratitude, I would like to give back to all the women and men who have been and are close to me something of what has been given to me. The gift of doctors, nurses, healthcare workers, physiotherapists, occupational therapists, speech therapists, psychologists, has been a continuous search for meaning, as well as professionalism; and also a search for objects that would help me face daily life, a shoe horn to put on pants, utensils with large handles to eat alone again. Feeling understood, as well as helped, is fundamental. And when I think that, at 66 years of age, childless, with a full life already lived, I could have simply ended it there, and not gone through all this effort, I also think of Saint Paul, when he writes in the first letter to the Corinthians: “No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your strength, but with the temptation will also provide the way of escape, that you may be able to endure it”. Was the temptation to prefer death, or was it the test itself? I don’t know, but the Christian spirit that pervaded my rehabilitation nonetheless supported me. And I am grateful for it.