One morning, four years ago, Francesca Mannocchi- a journalist covering war zones and writing for the L’Espresso newspaper- woke up in a hotel room with numbness to the right part of her body. It took months to reach a diagnosis: relapsing-remitting multiple sclerosis. What happened later is revealed, with a bright and incandescent voice, in “White is the colour of damage” (Bianco è il colore del danno, Einaudi, 2021).
How long did it take for you to understand that perhaps “everything” had changed?
There was a first phase. It was midnight blue. It’s when you know something is wrong but you don’t know what it is. Looking back now- a few years later- I think it was the hardest part. Absurdly, when they tell you that, “The thing you have is called like this” you feel better and experience some form of relief. Let me quote a friend of mine from the International Red Cross who, a few days ago, told me, “The hardest thing to explain is people’s way of coping with the disappearance of their loved ones and how telling a mother that her son died, after he’s been missing for 20 years, finally gives her peace.” I think it’s the same with the diagnostic limbo. You know that a part of you is gone but you don’t know its name, so when they tell you about it you’re feeling weirdly better because at least you know how to call it. Then there was a second phase, which was a bit lighter in colour: a crimson red phase. It’s when I started a new life, with local pharmacies, hospitals, doctors, waiting times and health support packages.
You wrote that when you suffer from a sickness “the meaning of certain days change and they turn into an intimate and private calendar. Today isn’t Sunday. Today is the day after therapy and I might have side effects that won’t allow me to get up”. How did this narration change over time?
There are months where the injection in the abdomen is simply part of your routine, just like washing your face in the morning. There are other months were, instead, you get that sense of injustice and think, “Why me?” also because you don’t know whether you’ll be bedbound the next day or feel tired, and whether the people around you will be able to understand that an asymptomatic condition is still disabling. It’s very complicated. The insidious aspect of this disease isn’t just the fact there are no known causes or cures, but that in the vast majority of cases it’s asymptomatic.
You defined it as a potential sickness. How do you get used to imponderability?
Today I can say this with a smile: I don’t want to sound like the Ghost of Christmas Future, but a potential sickness is a simple daily reminder that our destiny as human beings is to eventually die. The disease is actually just doing the dirty work of reminding us about it every day. Sickness brings more clarity than health. We live inside a body that is perishing at an extremely slow pace; we just don’t think about it. In this sense I’m just saying that if we listened in to the meaning of sickness we’d have more clarity than when we listen to our healthy body. It reminds you that you must not waste your energies or your time.
You never stopped working. The potential sickness, then, stayed away from that aspect of your life.
It really did. That’s also because until now- and hopefully for a long while- managing my condition has not been disabling. Therefore I just had to add one piece to the picture. I thought that the right approach for me would be to think about how to do things, rather than whether I would do them. There are things that I can’t do, for example I can’t get vaccinated for certain conditions, such as yellow fever, because that clashes with my treatment. Some people even lose their job after being diagnosed with a condition- no need to explain that one- when you inform your employer that you suffer from a chronic condition, perhaps you’re a cashier, they might simply decide not to renew your contract. If I look at the world from this particular perspective then not being able to get the vaccine against yellow fever definitively looks less important.
If we listened in to the meaning of sickness we’d have more clarity than when we listen to our healthy body.
The disease, its “damage” and your son Pietro came into your life almost at the same time. You described how the changes occurring in your body triggered another type of change and that the onset of your condition might have been elicited following the pregnancy. How much light or darkness is there in all this?
I will quote something Hannah Arendt wrote in her letters to Martin Heidegger: “There can only be shadows where there is light ”. I think that any life-changing event has both light and darkness. Autoimmune diseases are more common for women and I don’t think that it’s a coincidence. That’s my interpretation, not a scientific fact. These types of conditions represent the body’s revolt against itself and that’s something quite common for the body to go through when it experiences an event that it considers unnatural, overwhelming and too invasive to be able to lucidly cope with. Some might experience it as a loss, some as a funeral and for others- as I’ve been reading in the tens of letters I received this week- it’s an internal debate that will take you to the edge of a burrow while you’re asking yourself, “What should I do with my life now?” Everyone has their own threshold and everything changes once they go over it. It’s a listening threshold; when autoimmunity comes knocking at your door it reminds you of something that you did not want to hear in the first place.
In your book you wrote that whenever we become patients we think about the hospital as a place of care but discover instead that it is also a place of hypotheticals because medicine is fragile. Do you think it’s possible to come to terms with this uncertainty?
I think that patients should become used to seeing the hospital as a space for negotiations, where you negotiate with your doctor, rather than a space where you meet a healer. Furthermore, I believe that- as Covid is forcing us to learn- the public narrative around medicine should be reminded that, like all other scientific subjects, this evolves through trial and error rather than through successes. If we did not make mistakes science wouldn’t exist. Science is what it is because it corrects itself constantly rather than getting everything right at the first try. It exists thanks to errors, but somehow we always tend to forget this.
Being a community means not to waste the things you fought to obtain, even for us.
You’re following a therapy called Plegridy: every box contains two pre-filled syringes and it costs 892 euros. The Italian National Health Service covers the full cost of this treatment as well as many other expenses. What does it mean to be a community?
Being a community means not to waste the things you fought to obtain, even for us. It means that the right to receive care is a constitutional one. However, being a community also means bearing the burden of what it means to be responsible citizens, who put their foot down and fight whenever this social pact is not respected, and that seems to be happening more and more. In recent years I’ve seen the availability for free MRIs drastically drop in the Lazio region, where I live. That is unacceptable and it means that the management of public healthcare matter needs to be brought up again at the centre of the political- thus the collective- discourse. In recent years healthcare, thus sicknesses, and in turn the patients’ body, have been monetised. A trivial example is that if you call a clinic and pay for their service you’ll always find availability for the very next day. That’s not the point though. The point is that if you’re paying then you and your sickness are worth more. However, if you’re not the one paying for those exams then your disease and your body seem to be worth a little bit less. Consequently, as a person, you feel that you’re worth a bit less too. Unfortunately things work this way and you can tell that’s the case by looking at the waiting rooms of the neurology departments, the local pharmacies and the completely different faces of the people you see inside hospitals compared to those in private clinics. They are two different societies.
Do the places of care change?
People change. On one hand you have those patients coming in with bags and sandwiches from home as they know they’ll have to wait for eight hours and on the other people that can afford to pay one thousand euros to get an MRI scan the very next day.
I think that patients should become used to seeing the hospital as a space for negotiations, where you negotiate with your doctor.
You defined sickness as “a rock that makes ripples in the water”. It doesn’t just impact a single individual but the whole family and community.
I had this thought on two occasions in recent years. The first time was when my grandma passed away, in a hospice, a place lacking the spaces that so many people need as they have the right to die with someone caring for them and with dignity. The second time was when I thought about chronic conditions. Appendicitis can take you back to who you were. Absurdly, even a tragic disease like cancer can take you back to the life you had before, after a while. However, a chronic condition can’t, because by definition it’s always with you. That changes your relationships with people because the distress of those around you is even greater than your own. You have a relationship with your body- it’s like a map, you listen to it and know where it’s heading, when it’s struggling, when it’s ending, and where the symptoms start and end- while people around you don’t. Therefore sometimes it’s harder to manage that type of loss. These aren’t individuals that suffer any less or whose lives change any less. Whenever people diagnosed with a chronic condition don’t manage to get up from bed, someone else has to help them with their tasks. That means caring for them or for their children, and these things result in social, financial and psychological costs. The psychological cost is a financial cost, but we still struggle to grasp this concept; half a century passed since the interpretation of dreams and yet we are still struggling with this.
Can the use of language influence the direction of change?
Words don’t describe reality; they make it. Therefore something as trivial as you saying “I am sick” or “I have a sickness” theoretically mean the same thing but tell two different stories. One speaks about your identity- “I am this”- while the other one is about possessing something, it doesn’t describe a way of being but something you have. In the conventional narrative the language associated with sickness often tends to place particular emphasis on the vulnerability of the sufferers who then turn into vulnerable people in need of care, less active subjects in society. If you are not solid enough to understand that that’s not the case, you end up being induced into becoming like that anyway and then you turn into just that. It happens all the time with disabilities. When we describe people that have a syndrome, a sickness, a defect or that are “damaged” we only like the fun ones. We don’t like the ferocious, cruel and violent patients- those sitting on their wheelchair and getting meaner and meaner- as much. However, reality is made of people and not patients; some people are fun and some are not, some are violent and some are not, some are tolerant and some are not, and that doesn’t change if they have a disability.
You suggested that we need “a healthy, serene goodbye to who I was, to who we were”. Where should we place ourselves to change perspective?
Last night I read Paolo Milone’s book, “The art of connecting people”, in one sitting. At one point he wrote about one of his patients, Lucrezia, who hears voices. I actually believe that everyone hears the same voices she does and that some manage to make a pact with deafness and to never listen to them. For others, instead, despite that deafness, those voices keep on knocking and repeating, “I am here, listen to me”. I think that a good resolution for the future should be to try and listen to such voices. We don’t always have the chance to receive the advice that emerges from them, so it’s important that we acknowledge their presence and don’t deny their expression. I believe that a lot of the unhappiness and frustration that we feel all around us is due to the fact that people tend to silence these voices. They’re voices expressing micro-change. Besides, yes, we are perishable, but we are also people undergoing change and cannot fall into the illusion that we can just freeze our identity.
Edited by Giada Savini