On diagnosis | on the natural flow of things (1/2)
1. Intro: the topic of this text
Inspired by the experience and the atmosphere of the “Another story” festival organized for the eighth time this year by the publishing house “Templum” (Skopje), my initial idea was to write about disability, seen through the way of thinking that I call “following the natural flow of things”. But here I am facing a problem, which is the question of *representation*, that is: how much legitimacy do I have, as a person without a disability, to speak about disability, and to “represent” people with disabilities? Therefore, I’ve decided that the subject of this text will be the different ways in which I deal with the diagnosis, with an emphasis on what I call “on the natural flow of things.” More specifically: the starting topic of this text is the different ways I face the autoimmune condition, MS (multiple sclerosis). That position – talking about personal perception – is certainly the safest, and safety is never too great when talking about sensitive topics like diagnosis. So, I write about myself, about my way of seeing things, about my “new vocabulary”, (I write and discover along the way) and I would be glad if what I write inspires others.
2. In general about “the natural flow of things”
To answer the question “What is ‘the natural flow of things?'” we should consider the statement of the sociologist Arthur W. Frank (Arthur W. Frank), according to whom “Serious illness is a loss of the ‘destination and map’ that had previously guided the ill person’s life: ill people have to learn ‘to think differently.’”. Frank relates this statement to the words of Judith Zaruches, a patient with a chronic condition, who wrote [I] “needed … to think differently and construct new perceptions of my relationship to the world.” Similar statements can be found in other contemporary literature (one example is the author Anne Boyer, and her book “The undying” about the experience with cancer), and I especially like the novel “Silence” by the Macedonian author Jelena Nikodinoska-Čapovska (Publisher, Skopje, 2023), in which one of the main themes is trauma:
“Like hollows echoing with a dull sound, the words have lost their rhythm. Maybe new words are needed, maybe a new language needs to be invented for people who have survived trauma, she thought, convinced that the language she spoke was defectively inadequate, insufficient, even useless to reflect, let alone understand, her new reality.”
I once stated that for me, “in the natural flow of things” is something “like a map, like a lighthouse. Like a shield and a sword. Or, my new ‘operating system'”, through which I function. This “system” (“scheme”, “map”, “dictionary…”) began to be created (more precisely – “to be discovered”) since August 2017, and the very expression “following the natural flow of things” is for the first time mentioned in my novel “The Last Name of the Future” (Antolog, Skopje, 2018). The new map definitely began to find its final shape with the discovery of “The Analytical World of John Wilkins”, an essay (a short story?) by Borges, where J.V. is obsessed with classifying life, and the conclusion is that “the impossibility of penetrating the divine scheme of the universe cannot dissuade us from outlining human schemes, even though we are aware that they are provisional”.
3. Two texts
What does it mean to view diagnosis through this new worldview, and what is the “new vocabulary” that has come into use? I will try to answer this question by giving two views: the relationship of a person with a diagnosis to the diagnosis itself (in this text), and (in the next text on this same topic) the relationship of a person with a diagnosis to other people with (or without) a diagnosis/disability.
4.1. The diagnosis and “despondency”
In the person who has been diagnosed with a condition or disease, the diagnosis usually causes a whole range of feelings and conditions that in the “new dictionary” I subsumed under the umbrella term “despondency”; a person with a diagnosis could feel fear, restlessness, shame, self-pity, guilt, self-doubt, resentment, sadness, depression, helplessness, humiliation, exclusion… various states that indicate some kind of “weakness” or “inferior value” due to something perceived as a personal (or collective) failure – a perception that comes after *comparison* is made with the (‘normality’/’progress’) of) other persons and communities. In a word, I, as a person affected by a diagnosis, can find myself in a position to feel various kinds of “despondency”, that is, to find myself in the role of a “victim”, who is convinced to be suffering injustice (“in an unjust world”).
This role of “victim” can be comfortable not just because it justifies self exclusion from the community for the purpose of healing, but because it also gives “the right” to various forms of “revenge”: condemnation, anger and hatred, or at the very least passive aggressiveness. Because the “victim” cannot forgive. (Essentially, victims cannot forgive themselves.) Moreover, this role of victim, apart from a temporary condition, can grow into a lasting identity, where the person with the diagnosis fully empathizes with his role as victim. And the stronger this victim identity is, the greater the force that is drawn from it.
4.2. The diagnosis and “pride”
On the other hand, the diagnosis often gives rise to feelings and states that can be subsumed under the common generic term “pride”: moods that give the impression of “strength”, of greater power and even value (again *compared* to others). It can happen that the diagnosis puts the diagnosed person in a distortedly “privileged” state of “sufferer” who has the right to accuse, judge and condemn, to shame and to intimidate; to have a strong suspicion of others, to be arrogant, to pity, to sadden, to be angry, to hate… In a word, from a position of “pride” I can also become an “executioner”, who can (and should!) dispense justice (“in a cruel world”).
This role of “executioner” is even more comfortable because it gives the impression of power, and therefore of greater value. Like the role of “victim”, the role of “executioner” is based on the inability to forgive: oneself and (above all) someone else. Finally, like the role of “victim,” the role of “executioner” can evolve from a role into an identity, and that identity will not only justify one’s victim/executioner behavior, but also give meaning to all matters.
4.3. “Coin”
According to the scheme of the natural flow of things, “victim” and “executioner” appear to be two opposite “identities” of the human person, but in essence, they are one and the same: despondency and pride are two sides of the same coin. However, it’s not a “worthless” coin because there are people with – or without – a diagnosis who exist in a state of despondency and pride as a way of protection against possible future harm. I believe that – on the natural flow of things – one should have understanding, acceptance and compassion about it: depending on how much such victim/executioner behaviors affect the well-being (of oneself or in general).
The executioner and the victim are one and the same, but one can manifest in an instant as the other, and vice versa, because pride and despondency move from extreme to extreme, according to the principle of “pendulum” (also expression from the “dictionary”). In short, the victims contain an executioner within itself, and every executioner is a victim in disguise – and it can easily present itself as a victim.
4.4. The diagnosis “on the natural flow of things”
Between despondency and pride is the middle, the balance, “on the natural flow of things”: a group of feelings and states (of the type of compassion, forgiveness, love, joy, gratitude…) that – with the exception of indifference – lead me to a more conscious, more aware action & – to well-being. According to my experience, when the “loss of the map of the personal world” occurs due to the diagnosis, and when there is a need for a deep re-examination and acquiring a new perception of the happenings around oneself (and above all within oneself), the key role of such re-examination belongs to *curiosity*, which phenomenologist Edmond Husserl considers “the lowest, all-founding interest”. What we take for granted and (often uncritically) accept as truth is actually delusion. About diagnoses and diseases there are many misconceptions, sedimented beliefs, prejudices, prejudgments and judgments – all drawn by the measure of other people’s experiences, or according to the measure of one’s own fear and restlessness. Curiosity is the antidote to delusion, and the key outcome is the discovery of different *possibilities*, other than the “prognosis” – that can often be negative. Curiosity means asking questions: What are the possible outcomes? Does the body really have a tendency to heal itself, if it has the necessary conditions? Are there examples of people who have overcome this condition? What did those who could speak of healing do? What are the factors that influence the acquisition and retention of well-being? Do I also have the conditions to practice that, or am I not among the privileged? Or maybe the privilege is a trap? How can I act to acquire and exercise my health rights? What groups can I join in order to express my solidarity and receive support? What is the best I can do? How to reduce the toxic influence of the despondency and pride of those around me, and above all of our own pride and despondency?… The questions are innumerable, and often lead to restlessness and stress by themselves. Thus, I visualize the “natural flow of things” as a vertical line, at the bottom of which tremble restlessness, calmness and – curiosity: the main “compass”, the main torch that dissolves the illusory darkness of ignorance, delusion and fear. Most of the time, the greater the conscious curiosity, the deeper the understanding, and the more rooted the *acceptance* and *letting go*, which are key to fostering well-being and healing.
But even before talking about curiosity, one should consider the key, “unifying principle” of all feelings and states “following the natural flow of things”, that is, *faith*. It is difficult to talk about something as “ethereal” and subject to misunderstandings and manipulations as faith. Here I mean faith in the very “natural flow of things”: faith in the power of love, forgiveness, gratitude, understanding, humor, togetherness… Faith in curiosity and in the values that curiosity encompasses (with this “encompasses” it is good to imagine the face of John Wilkins) – patience, humbleness, courage, vulnerability…
Faith, in fact, is above everything, so it can be the opposite of curiosity itself.[1] One possible opposite of curiosity is prejudice; another opposite is disinterest, and the third (and most favorable) opposite of curiosity is indeed faith: when the patient is not necessarily curious about the details of his condition and about the various “possibilities”, but has full faith in the therapy that is proposed to him, and has faith in the best possible outcome of the therapy. In fact, it is ideal if positive prejudice and faith are one and the same.
4.5. “The natural flow of things” and comparisons
Feelings and states from the fields of “pride” and “despondency”, as well as feelings and states from the “natural course of things” can be intensified by themselves, and the catalyst for such changes is usually comparison with others. This comparison and intensification of the feeling/state can be accompanied by some form of (self)condemnation (in the case of feelings and states from the fields of “pride” and “despondency”), or be accompanied by acceptance (in the case of feelings and the states of the natural course of things). In the second case, or “after the natural course of things”, comparison with others inspires. Above all, when I follow the natural course of things, I am aware that each person has his own, special path to walk, his own “sailing”, his own standards and “personalized” measures of accomplishment (his own “battles”, if we will), and therefore comparison with others can be a harmful delusion. Awareness of this truth intensifies love for others and for oneself, and in general – intensifies the natural course of things and all the benefits that come with it. It enhances personal well-being, but also strives for the well-being of the community (because in everyone – more or less – personal healing depends on the “wholeness” of the community: when the suffering of the other is experienced as one’s own).
4.6. “Walking the tightrope of gratitude”
Once with the new “map”, with the new perception of the world, under the playful analytical eye of John Wilkins, I divide the possible reactions to the diagnosis into “pride”, “despondency” and “following the natural flow of things”, things are easier to navigate, and the control of the condition is much better. Of course, it would be most healing if a person could live undisturbed with the feelings and the states that come with the natural flow of things, but the reality is such that it often introduces us to situations where we have to face (our own) pride and despondency, and often even to believe that we depend on them, that it is “normal”. In reality, I find myself moving non-stop between all three “modes”, and I try to “center” myself in the natural flow of things. I am convinced that well-being depends on this: on constant attempts, again and again, to acquire and maintain balance (I often visualize in myself the expression “walking the tightrope of gratitude”) – without being outside the community: precisely because the conscious, joyful, and loving “service” to (the natural course of things, in oneself and in) others is the highest activity one can have.
4.7. Outro: apparent and real power
The topic of “diagnosis” is a broad one, and the ridiculous shadow of John Wilkins lingers over any attempt to exhaustively systematize reflections on “the natural flow of things”. In conclusion, I would say that when it comes to facing the diagnosis, the forms of “pride” and “despondency” give me only apparent power, whereas acting through the natural flow of things I receive real power, which is of an alchemical, transformative nature. And here we are no longer talking (by inertia, following sedimented stereotypes) about a “struggle with a diagnosis”, but – following even older, yet ever-fresh narratives – about a “journey”, about an adventure, about the wonderful opportunity to be the most inspiring story of one’s own life.
Footnote:
[1] By categorizing human reactions in “pride”, “flow” and “despondency” (and by “mirroring” pride and despondency) one avoids the dichotomous traps of the mind.1a
1a The expression “the dichotomous traps of the mind” is taken from the editorial by P.andalf Vulkanski in “Margina” No.1 (Templum, Skopje, 1994)
Used literature:
„Silence“, Jelena Nikodinoska-Čapovska , Publisher, Skopje, 2023
“The Wounded Storyteller”, Arthur W. Frank, The University of Chicago Press, Chicago, 1995
“Husserl’s Theory of Instincts as a Theory of Affection”, Matt E.M. Bower, Journal of the British Society for Phenomenology, 45:2, 133-147, 2014
https://edisciplinas.usp.br/pluginfile.php/4465622/mod_resource/content/1/BORGES_ElIdiomaAnaliticoDeJohnWilkins.pdf
“Margina No.1” (editorial), Pandalf Vulkanski, Templum, Skopje, 1994.
Image with tightrope generated by Microsoft Bing image Creator.