This blog entry will be an aberration from my other entries. I normally avoid covering the emotional toil that plagues chronic illnesses however this entry is devoted to such specifics. These are some of my most common musings- from a mind ravaged by ME/CFS
I often ponder the questions in the existential domain of ‘why here and now?’ Why did I end up with ME/CFS and why did it flourish at this stage in my life? Rather than this question being a catalyst for depressing and macabre answers and rather than this being a rhetorical jibe, I instead hypothesise that ME/CFS may have been my saving grace. If I was not inflicted with this debilitating disease, I may have died in some unfortunate incident such as a real crash (not the ME/CFS type!) By having this illness, I may have averted what could have perhaps been an even grimmer situation.
The unique timeframe that I and other ME/CFS sufferers contracted this disease is particularly quizzical. Out of the eons of human civilisation, to bequeath a disease that can be sufficiently diagnosed however not have any opaque etiology or necessarily effective treatments is statistically freakish. Only a small window within the expanse of time involves human’s being able to diagnose however not treat or fundamentally understand an illness.
I often use a purposeful fallacy to avoid staring enviously at others. This dubious argument I created states that ‘One only experiences the act of craving something when a comparison is made to “the other” who has entity x.’ For instance if everyone in the world could fly besides me then I would envy such flying prowess that is otherwise ubiquitous worldwide. It becomes evident that such envy stems from what everyone else has as opposed to what I have and it is therefore only imposed by the manner in which I view the world. I therefore can pretend that beneath the thin veneer of the population’s healthy exterior lies much permanent pain and anguish. I am therefore not envious of health because it does not exist (although in the real world, I would still dearly love my health back!)
My illness began when I was 17 years old and I am writing this article at the age of 23. I am in the unique situation of not knowing what I am like as a person. The developments that occur between 17 and 23 can be dramatic and living such a restricted life has caused me to be unsure of my real personality (when I am void of illness), my interests and who I fundamentally am as a human being. I don’t consider myself to be aged 23 but rather I tell myself that I am still 17 and my life has merely been placed on pause. When one doesn’t experience exterior trials, thrills, tribulations and ageing peers- does one really metaphorically grow older?
The twisted irony of this illness involves the very instrument needed to research this disease being affected- the brain. This circular quandary is one of the most frustrating elements of this disease and leaves one often feeling helpless. One could cope with a predominantly physically crippling disease or even a solely neurological disease. One could rely on the unaffected bodily function- i.e. mind or body. ME/CFS patients are not so lucky. I would love to passionately pursue some athletic or intellectual endeavour however the nature of this illness prohibits precisely both of these avenues.
The demeaning illness name that literally applies to 7 billion people worldwide in ‘fatigue’ is perhaps the most malicious misnomer in the English language. Such a large portion of the trivialisation of this illness (and perhaps lack of medical inroads into this illness) is a consequence of the literally interpreted nomenclature: ‘chronic fatigue syndrome.’ The condescending and antiquated jibes stemming from the psych lobby are another gloomy face of this illness. Much like the ‘God of the gaps’ theory, I call the psych lobby’s assertions ‘the gaps of the illnesses.’ When one ‘psychosomatic’ illness is proven beyond doubt to be purely biological- there domain narrows… I wait for the day that ME/CFS is removed from their realm.
The politics that is compulsively intermingled with this illness has forced every patient into the advocacy minefield. We must burn both ends of the candle- treatment research and political advocacy to stumble across a solution in the form of a cure. Which end of the candle will vanquish first remains the pertinent question.
Having nebulously defined limits which if one misestimates or fails to preconceive of results in the wicked cruelty of suffering. The punishment in crashing does not fit the crime of misestimating a variable. This process is almost poetically symbolic yet devilishly evil. It is as if ME/CFS patients are being tempted onto an ice arena yet it takes one false step and beneath the mysterious surface, lurking in some unknown plain, the cracks instantaneously emerge and one is devoured by the world.
Although it can be interpreted as a sadistic tendency, I cherish watching gruelling sporting events such as Le Tour De France. Such vision portrays fellow mortals suffering while scouring mountains that reach into the heavens. Pain is painted on their face and is a timely reminder for me that in the real world, that I am not a part of, suffering is abundant. Having the knowledge that I am not the only individual on this earth to experience constant physiological pain is refreshing. If others can tolerate it- I can too. This aforementioned sporting event is merely a manifestation of self-inflicted pain yet I am reminded that some chronically ill people out there are worse-off than me. I am lucky compared to these sufferers.
I always considered the moral theory of utilitarianism to define happiness (or pleasure) and pain as antonyms. I am now a contradiction of these former thoughts of mine. I am an extremely happy person every hour of the day yet conversely I am also in pain 24/7. ME/CFS has forced me to reconsider a plethora of my former thoughts and it has changed me in more manners than I considered possible.
There is very little for me to occupy my time with however curiously I never fall down the abyss of boredom. Jean-Paul Sartre once said “If you are lonely when you’re alone, you are in bad company.” I am quite fond of my own company and have always been a relatively solemn person. I tend to break each day into segments rather than tackling the day as a holistic entity. This technique has contributed to my days passing swiftly.
Most painters live to paint however I paint to live. When I am not well enough to partake in the few activities that I am restricted to (e.g. TV) I can paint. This is not something that I particularly enjoy yet this is thrust onto me. I paint for the process not the end product. I find the repetitive brush strokes onto canvass soothing. Painting is essentially a management strategy intertwined within this illness for me.
Like every ME/CFS patient, I have been on the receiving end of pejorative comments from family, friends and doctors pertaining to my illness. To avoid negatively dwelling upon such comments for my own sake, I employ ‘Hanlon’s Razor’ to such remarks. This concept is defined as: “Never attribute to malice that which is adequately explained by stupidity.” I paraphrase this statement to read “Never attribute to malice that which is adequately explained by ignorance.” When a prejudice comment is made to me relating to my illness, I mentally explain the antagonist’s behaviour through their ignorance of ME/CFS as opposed to them being malicious.
Accompanying any chronic illness are the inevitable gloomy thoughts that pepper the mind like Maradona homing in on goal. I deflect such thoughts by firstly identifying them as pragmatically useless entities as early as possible. I then change my thought process to focus on an ulterior topic. This process has conditioned my mind, as if it were one of Pavlov’s dogs as I now seldom let negative thoughts infect my soul.
It is not a matter of will I get better from this illness, I only consider the question of ‘when will I reach remission?’