I wrote this narrative article on environemntal diseases in 2017.
“From now on, you will barely eat, and your life will change,” said the doctor. He was wiry, and spread around irritation and weariness. His blue eyes, framed in orange glasses, didn’t suit a genius embittered by human stupidity. He escorted me out of the room. “You are not mad,” he said. He put his hands around his face, mimicking a horse with blinkers: “Doctors: they are all like this. Go to the mountains or the sea; move to a healthier place.” He shook my hand in his, and granted me the first smile, like a secret blossoming just for the two of us: “Well, what are you going to do with this life I saved?”
I called him “The Luminous”. After twenty years of physical and psychological pain, it was not difficult for me to follow his instructions, although they would be cruel even for extreme survival training. My meals turned into Zen paintings in a few colours: rice, chicken, salad, zucchinis, and apple. A few months later, the first setback appeared: my brain refused to let the spoon in the mouth. I invented childish tricks: I blended the apple to make a sorbet and carved the zucchinis to fill them with chicken. Then, the crisis ceased, and food became only this: food. I began wandering around like a panda in a supermarket. How could it be that everything was “toxic” to me? What had happened to my body; why was it no longer able to distinguish food from an aggressor? Why was I programmed to incite an army of allergic mediators towards the world?
In the evening, stirring the rice reminded me of a poem learned in high school. I recited it by heart, searching for the perfect intonation: “Black milk of morning we drink you at dusktime we drink you at noontime and dawntime we drink you at night.”[i]Whenever it seemed to me that I was taking the right direction to solve the problem, something in my body didn’t work. Doctors asked me for 150 euros every time in exchange for useless visits. “Black milk of morning we drink you at night we drink you at dawntime and noontime we drink you at dusktime”. Another spoonful of rice, another zucchini, another day, and another 500 euros for medicines. “We drink and drink there’s a man in this house who cultivates snakes and who writes…”
At a certain point, I sensed the truth, but it took me a year to convince the Luminous to write it down. Sometimes, truth is too complex to be kept under a label. The diagnoses are controversial, multidisciplinary, legally inconvenient, or simply not recognised. However, some things are clear. Over the last decades, a number of scientists, including neurologists, immunologists, toxicologists, internists, psychiatrists, and biochemists have demonstrated that synthetic chemicals are a determining factor in the increase of many diseases and psychological disorders: autoimmune diseases, disorders of the nervous system, neurological and neuropsychiatric disorders, allergies, asthma, food intolerances, and hypersensitivity diseases. Sometimes different aspects – viral, bacterial, chemical, and psychological – can present themselves together, and it is impossible to unravel them. Nevertheless, medicine seems not yet ready for a change in paradigm, and human beings are condemning themselves to illness and death.
Before meeting the Luminous, I had spent ten years between the bed and the sofa. At that time, it took me hours to get up, my arms and neck burning like white-hot metal. I used to wake up with swollen lips and stuffy nose, unable to breathe well. After a couple of hours, I had to lay down, exhausted and with my skin burning hot. I didn’t tolerate food, and was operated three times for a massive bowel obstruction: at 21, 28, and 30. At the first sign of fatigue, I nearly fainted or saw double. I always slept. Perfumes and car exhaust, that had been bothering me since I was a child, struck me like an offence: all of a sudden, I found myself staring at nothing, and felt my energy decrease. I needed sugar, had muscular and joint pain, and breathing was difficult. When I was 25, that dreary pain used to go through my body like a steel blade. Thinking, remembering, and deciding simple things was hard. It seemed to me that my mind was overwhelmed. Moving my body was exhausting, “as if” my cells had no energy reserves left and could not breathe. Sometimes, I forgot a word, or confused it with another: I would say “turtle” instead of “pan”, and “tree” instead of “bus”. I started noticing that it took me minutes to remember the correct word. I sensed my hormones going up and down monthly, and altering my mood. My night dreams were inhabited by a toxic miasma. In the morning, I gasped, my mind poisoned by a chemical cocktail mixed with nauseating anguish. Whenever the temperature of the room was too high, or I had not slept enough, I perceived that the chemicals in my brain were affected, which, in turn, distorted my dreams, and prevented me from waking up. I would run outside to breathe fresh air, awaken the brain, and throw off that desire to vomit tinged in depression. I felt like I was living the life of someone else, “as if” my identity had been stolen. I hadn’t yet read any book about the brain, or studies about the effects of chemicals on the human body, thus I didn’t understand how it was possible to feel depressed, dull, dimly anxious and terrified, wrapped in a “brain fog” (this is a technical expression), and at the same time be sure to be “another person”. I didn’t know anything about the neurological side of emotions and thoughts; I just lived in pain, as if it was normal. Nevertheless, I had the feeling that something was awry. I could see her; she was a person in a parallel bright universe, the person I somewhere still was and would be. She was always one step ahead of me, beyond a veil.
It sounds impossible that so many doctors didn’t give weight to my symptoms for decades, but it happens frequently to women.[ii] It affected my social life. I started hiding my true self behind jokes and a lively intelligence. On this side of the veil, I pretended to live. I had mini-jobs that allowed me to buy time and believe that I could do something. I was a theatre actress, a private teacher, and a pianist. I used to paint, trying to safeguard that bright world. In my paintings, freedom has always been turquoise: a distant sea and a porch where I could sit, write, and breathe.
I was under the impression that there was no space for me within society. I could not work at the required conditions, since they were hostile to my body. I was denied the moral right and duty to give back a contribution according to my talent and possibilities.[iii] To be honest, I was dying, for some reason unseen, and humiliated by medicine. My mind and body ended up in having a contact with the person beyond the veil only after four o’clock in the afternoon, and under the influence of painkillers. The majority of people raised their eyebrows, and doctors dismissed me with the conventional “psychological problems”. The results of my blood tests were perfect, and the reason was simple: they were the wrong tests.
The first time I met Flora, I was 35 and she was 55. I didn’t know how to behave. Even though I was a veteran of suffering, I was a novice of awareness. After so many years in distress, I had just started to learn the lexicon of captivity and the tricks to survive. As those who enter a concentration camp, I had just received a new identity and a number: 2Q24. I was learning who I was, and meeting my new companions.
With Flora, everything had to be perfect. The punishment for my mistakes would be a physical and psychological torture against her. Thus, before meeting her, I chose some old clothes and washed them three times in water, salt, and baking soda. I hung them in the boiling room so that they could dry off without absorbing any smell. Then, I wrapped them in tissue paper, and put them in a plastic bag. I washed my trainers, too. The day of the meeting, I put them in the refrigerator, in order to weaken their smell of rubber and formaldehyde.
In the shower, I rubbed my skin with baking soda, and got dressed only a few minutes before going out. I put on a tracksuit and a fleece jacket, then another jacket. It was cold outside, and the freezing shoes were a torture. I realised my mistake when it was too late: I had put the clothes in the plastic bag when they were not yet completely dry; as a consequence, they now smelled of swamp. The season was wet and stinky, and I still lived in a “non-decontaminated” environment. In the language of the separate world where I now lived – that I used to call the Lager – it meant that my family still used insecticides and perfumed products.
Wearing new clothes would only get things worse. During the bicycle ride, I was aware of the air sticking to my jacket in minuscule drops together with the remains of human and vegetal activities: dust from the chimneys, car exhaust, fragments of grass, and cheap cologne. I thought about Marina, who had instructed me how to behave. I had found her on Facebook but not yet met her. Facebook had provided others with the tools for a new global dictatorship, but had given us the possibility to build a Resistance.
Flora was already waiting for me outside like an impatient child. I switched off my mobile phone; I did not want the radiations to cause her pain. She was wearing sunglasses, a scarf, and a cap. Her figure was slim, naturally elegant, and shrouded in layers of clothes, but even if she was so covered, it was obvious that she was not able to eat enough. Food caused her pain, mouth ulcers, fainting, allergic reactions, and other symptoms. Anyone would link her to those pictures of Auschwitz, the kind you normally see in schoolbooks: “You who live safe in your warm houses, you who find, returning in the evening, hot food and friendly faces, consider if this is a woman.”[iv]Yet something in her was out of tune: such a vivid intelligence overflew her bones covered in skin, and I wondered how they could contain it without crumbling into pieces. She looked like a Ferrari engine on an old model Cinquecento.
We had a walk. Yard time: a precise path through a parcel of land yet to be built. Flora could not go farther. Her cells were no more able to bear the polluted air, foods, softeners, and cosmetics on the body of others. She had gone haywire, or “TILT” (TILT is a technical expression that means “Toxicant-Induced Loss of Tolerance”). Basically, the detoxifying capacity of her cells had been altered by a number of stressors and chemical poisonings. Her nervous system now reacted like a diapason at the first vibration, almost like sitting on a non-lethal electric chair for years. Whatever chemical remnant on my skin, hair, and clothes would immediately activate the hypersensitive scanner in her brain receptors. She would sense the toxic molecules as a besieged hare smells the burning wood. The smell would explode in her nose and throat, and would cause her physical pain, breathing difficulties, and neurological disorders. For many years, she was unable to attend public places, or walk the streets of the city. She could barely eat, but my mere presence could force her to swallow the flavour of human dumps. She was almost banned from physical contact and buying new stuff; new clothes, for instance, would trigger allergic reactions, for they often carry scents and process residues. I couldn’t help thinking that one of the principal aspects of dictatorship is the loss of identity. In the Lager of neoliberalism and chemical industry, I was witnessing and living exactly this: ghosts of women wandered among the ruins. They stumbled, poisoned and unaware of themselves, bodies made dysfunctional like weed treated with glyphosate.
When we reached the playground, Flora showed me the orange stripes of grass on the wayside. “That’s it”, she said. Two days before, we had sent the umpteenth letter to the Municipality to protest against the reckless use of insecticides. Kids were playing near us in a puff of chemical fragrance, tiny clothes washed in toxic softeners, that our receptors would sense from hundreds of metres away. The molecules passed through the protective barrier of our brain without asking permission, and destroyed the energy reserves in the mitochondria of our cells. I felt a pang of pain cutting the cheek oriented towards the park, and a blade plunging into my hand. My mind became empty, though vaguely sad, anxious, and angry, for the sudden activation of my amygdala. My eyes, nose, and throat started burning in a taste of soap. I wondered what Flora was feeling, for she could no more placate the everyday symptoms with medicaments. She smiled placidly, as usual: “I must show you my Spanish Lobivia; it has just blossomed, you know?”
It’s been a long time since that first meeting. Now, I am not only a veteran of psychological and physical pain, but also a connoisseur of its nomenclature and the identity that the Lager had stuck on us. A part of my story belongs to the numbers branded on my DNA. I am 2Q24, as I said. It is the acronym of my post-human quality. Technically, it is a “DNA adduct”. I carry beta-naphthol on my DNA: on chromosome 2, segment Q24. This synthetic chemical – one of the countless derivatives of benzene – inhibits a gene fundamental to the metabolism of fats and the production of ATP (read: “energy”) for the totality of my cells and organs. I cannot say if it got there while I was in my mum’s womb, or during my lifetime. Considering the number of toxicants we are exposed to (through food, plastics, medicaments, pesticides, perfumes, textiles, and the indoor and outdoor air), and the role of bacteria, viruses, and psychological stress in the disruption of our brain and our already weak immune system and genome, it is an irrelevant question. Essentially, DNA adducts are just a small part of the picture about how the black side of modernity affects health. They are not even necessarily permanent. It is so difficult to avoid the inheritance of a weakened genome, or the everyday exposure to powerful chemicals, that having a genetic predisposition or carrying DNA adducts is quickly becoming insignificant.
By now, I know the rules to survive and recognise the recruits from a mile away. I often try to save them, as other women have tried to save me. And yes, we are mostly women, and for the major part unaware. We suffer from pain and food intolerances. We are sensitive to chemicals, perfumes, metals, plastics, medicines, and smells. We carry unbalanced hormones, damaged mitochondria (with which we fabricate the new generations), and a blister of cortisone in the jeans pocket. No wonder there are already many children here, and men are starting to arrive.
The hardest thing was not even to give up my physical and mental health because of the pace of human progress. It was to accept that I was not an exception. We are everywhere. I see young, ill women on Instagram, Facebook, and Twitter. There is an affective aesthetics that recurs in many pictures, mingled with inspirational and positive-thinking quotes. It seems the only way we are somehow allowed to be part of the society, as if survivors were decent only if embellished. Sometimes, we wear a white mask to protect our nose from breathing toxicants that our cells cannot process. At other times, we stay home eating zucchinis and rice for years, accustomed to being called mad. When possible, we swallow painkillers and antihistamines in order to remain among the human beings and perhaps get a job. We are the mothers of an ill future, bodies modified by neoliberalism. We are appearing on every piece of news: Multiple Chemical Sensitivity, Fibromyalgia, Chronic Fatigue Syndrome, and Autoimmune Diseases. We are overflowing like a wave of crazy ants, zombies who fall out the sheets and wet the ink words, until all over the world no other story will be readable except ours. We are the walking dead, the falling dead, and the weeping kids. We are so many that you don’t make it in time to sweep us away.
A concise bibliography:
- Martin L. Pall, PhD, Explaining ‘Unexplained Illnesses’: Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, and Gulf War Syndrome, CRC Press; 1 edition (April 25, 2007).
- Tamara Tuuminen, Erkki Antila, Multiple Chemical Sensitivity: the disease is tangible – the reactivity is physiological, LAP LAMBERT Academic Publishing (February 19, 2018).
- Anne Steinemann, a selection of recent publications: https://www.drsteinemann.com/publications.html
- Nicolas Ashford, Claudia Miller, Chemical Exposures 2e: Low Levels and High Stakes, John Wiley & Sons; 2 edition (8 Jan. 1998).
- On the concept of TILT (Toxicant-Induced Loss of Tolerance) see: Dr Claudia Miller, MD, MS. http://drclaudiamiller.com/.
- Donna Jackson Nakazawa, The Autoimmune Epidemic, Touchstone; Reprint edition (February 10, 2009).
[ii] Pain Bias: the health inequality, Jennifer Billock, 22 May 2018 (http://www.bbc.com/future/story/20180518-the-inequality-in-how-women-are-treated-for-pain). Everybody was telling me, Maya Dusenbery, 29 May 2018. (http://www.bbc.com/future/story/20180523-how-gender-bias-affects-your-healthcare).
[iii] Italian Costitution, Art. 4
[iv] Mixed verses from If this is a man, by Primo Levi. Translation by Stuart Woolf, 1959.