by Lia Pas
April 12,
2022
from
ClassicalWisdom Website
Spanish version
Lia
Pas is a Canadian multidisciplinary artist who works in
image, text, and sound exploring body and states of
being.
She
has published one book and two chapbooks of poetry and a
few personal essays.
She
focused on performance-based work until 2015 when she
became disabled with a chronic illness.
Since then her work has focused on text and fiber arts. |
What
happens
to each of us is ordered.
It furthers our
destiny.
Marcus
Aurelius 1
We never know when our lives might be changed suddenly and
irrevocably.
2015 was one of the most
successful years of my career as a multidisciplinary artist and
vocal coach. I was teaching privately and at our local university
and collaborating with several other performing artists.
My largest project was
writing and performing libretto and music for an upcoming dance
opera. After a three week intensive with the dance opera company, my
collaborator came down with a virus. I gently hugged her aching body
and said goodbye.
The next day I was sick.
I still haven't recovered.
Stoicism has been of great help in
managing my mental and physical health while living with chronic
illness.
I also believe
Stoicism has the potential to shift how society views those
disabled by chronic illness - from burdens to human beings
capable of flourishing - and to offer the support necessary to
make that happen.
My story of becoming sick
with a virus and not recovering is becoming more common as the
aftereffects of the
COVID 'pandemic' sweep the world.
Numerous people who were
sick with a mild version
of COVID are still sick with "long
COVID", experiencing similar symptoms to what I was diagnosed with:
Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS):
56% of Canadians
with COVID report symptoms long after infection. 2
962,000 people in
the UK are still unwell. 3
Most of them, like I, are
too sick to work, and have no approved treatments.
My initial symptoms were,
tingling all over my body and overwhelming
fatigue...
Not the fatigue from
pulling an all-nighter, but where going from couch to bathroom wears
you out for hours.
Where chewing is so
exhausting you subsist on liquid meals.
Where conversing,
reading, or writing sets your brain into a deep fog.
Where you shave your
head because showering is too exhausting.
That sort of fatigue...
About two months into this ordeal, my doctor brought up the
possibility of ME/CFS. Until we ruled out other causes I was to rest
and not exert myself in any way.
After three months, I
told my collaborators and voice students I was too sick to work.
© Lia Pas© Lia Pas
ME/CFS has abysmal research funding and the diagnostic criteria
isn't taught in medical schools.
Current treatments are
limited and only work for some.
Up to 60% of ME/CFS (and
likely long COVID) patients are women 4 and many aren't
believed when they describe their symptoms because all their tests,
like mine, come back normal.
People with moderate
ME/CFS - like myself - function at about 50% of their previous
capacity if they pace themselves well.
People with severe
ME/CFS are bedridden, live in darkness and silence because of
severe sensory sensitivities, and some must be fed through
J-tubes directly into their digestive systems.
You
mustn't forget that
this body isn't
truly your own,
but is nothing
more
than cleverly
molded clay.
Epictetus
5
In illness everything is laid bare.
We suddenly understand
just how much we take our bodies for granted. Our ability to work,
breathe, walk, write, listen is ripped away. We are an ill thing
burdened with aches, pains, and other symptoms.
Sometimes the symptoms
are so intense we cannot do anything but experience them. Like the
box of pain in Dune, 6 we are forced into an
initiation that breaks us down into our discrete parts.
We drown in sensation.
How Illness
Became My Way
You have
to assemble your life yourself
- action by
action.
And be satisfied
if each one
achieves its goal,
as far as it
can.
No one can keep
that from happening.
Marcus
Aurelius 7
What does a composer
who can't listen to music do?
A performer who can
barely stand or speak?
A writer who can
barely read?
I lost my income and my
ability to create art...
I knew if I did not
manage to find some way to create I would fall into a deep
depression on top of being so physically ill.
I don't remember what triggered a need to read more Stoicism, but I
got a copy of Ryan Holiday's
The Daily Stoic and found the short
entries concise enough for my fatigued brain to handle.
Each day I read a page
and wrote down one line.
There were hours in the
day I needed to remain absolutely still and so I contemplated - not
ruminated, contemplated - on how I might use Stoicism to help manage
my mind since my body was utterly outside my control.
The impediment
to action advances action
What
stands in the way
becomes the way.
Marcus
Aurelius 8
Since I could hardly move, I needed to embrace a slow and sedentary
creative medium.
Writing wasn't possible
since brain fog and aphasia (trouble finding words) were major
issues.
I saw a period drama
in which a woman was told to,
"take to her bed
to work on her embroidery."
I had taken to my
bed.
I had done some
Ukrainian cross stitch in the past.
I had created some
text/image pieces before I got sick.
I slowly gathered
embroidery supplies and started stitching.
© Lia Pas© Lia Pas
I continued contemplating Stoic maxims throughout the day and
now had an activity to do while resting.
I began to love my life
again.
My illness gave me the
gift of time - something all artists desire - and my brain could
rest in the slow, deliberate art of hand embroidery.
A deepening of the concept of 'the obstacle is the way' and of the
practice of embroidery happened a couple months after I started
stitching:
as I meditated - my
nervous system pinging, tingling, and sparking viscerally
through me - I focused in on those sensations.
I made them my
meditation.
As I honed in, I saw each
discrete sensation as designs, colors, and stitches.
After this experience, I
began to stitch my neurological sensations as I experienced them.
9
Because of this exquisite
attention, the symptoms became my creative practice - the obstacle
became the way in an even deeper way, and so began my
symptomatology series...
I found I loved my fate,
my days, my new creative practice.
I felt the power of
Amor Fati...
© Lia Pas© Lia Pas
Virtues as
Supports
ME/CFS is a disease with few options for treatment and few doctors
who understand it.
Many patients fall into
depression and some commit suicide. Our society sees illness as
amoral - blaming the ill for their sickness instead of seeing health
as a preferred indifferent. 10
To blame someone for
catching a virus is illogical at best, and ableist at worst.
The
four Stoic Virtues offer principles
through which we can make positive changes both as a society and as
chronically ill individuals.
We live in a
capitalist society where the worth of a person is wrapped up in
their ability to work and/or make money.
When one is ill -
especially with fatigue - such work is near impossible.
We cannot contribute
to capitalist society and are seen as burdens.
This - paired with
abysmal social supports for disabled people - causes extreme
wealth inequality.
It is expensive to be
disabled.
We require help with
basic necessities like shopping, cooking, cleaning, and
sometimes washing ourselves.
We require mobility
aids.
Capitalism is a punitive
system for the disabled and chronically ill.
The virtue of Justice is what ME/CFS and long COVID
requires.
Justice asks:
With so many people
becoming too disabled to work, what are the options for them?
What could healthy
people and society do to better support this ever-growing
section of the population?
Even if/when we are able
to
recuse ourselves psychologically
from the idea that work = worth, we are left with the cultural
pressure to do more than our bodies are capable of.
This is where the virtue
of Moderation or Temperance comes into play.
If you
seek tranquility,
do less.
Marcus
Aurelius 11
One of the best ways to manage fatigue is through
pacing ourselves.
If those of us with ME/CFS
exceed our limits, we fall into post-exertional malaise (PEM)
- flu-like symptoms - for days to months depending how far we have
pushed ourselves.
People have gone from
mild ME/CFS to bedridden after following the advice of ignorant
doctors who recommend exercise.
Learning to love doing less - to be temperate by creating routines
with ample rest and recovery time - means we can flourish as
individuals. We can create meaning and self-worth in ways that honor
and accommodate the needs of our bodies.
I did this through
embroidery, and contemplation on the virtue of Moderation can
help others find ways that work for them.
© Lia Pas
To use the discretion of Moderation without falling into
laziness requires Wisdom.
To turn philosophy into a
life well lived in the midst of debilitating symptoms requires
Wisdom.
Wisdom is key.
Anathema to Wisdom is hubris, and I would be remiss not to
mention a major issue facing those with
ME/CFS and long
COVID:
disbelief...!
There is a cohort of
psychiatrists who believe - despite biomedical proof to the contrary
- that these illnesses are 'purely' psychiatric. 12
Some doctors have put
severely ill people with ME/CFS into psychiatric institutions.
Through advocacy work, psychiatric interventions and exercise are no
longer listed as treatments for ME/CFS by
the CDC, but doctors still
recommend them.
Funding must be channeled
into biomedical research towards viable treatments for these
illnesses.
It takes Courage to delve into medical papers to gain
information necessary to advocate knowledgeably for oneself. It
takes courage to challenge a psychiatric misdiagnosis that
overshadows your very physical symptoms.
Being adversarial towards
- fighting against - our illness doesn't serve us.
Acceptance and seeing
where we have agency does.
Eudaimonia
(Flourishing)
My life is now calm, ordered, and balanced.
The exquisite attention I
offer in my symptomatology embroideries is a way of dissecting,
understanding, and being compassionate about my symptoms.
I am overjoyed and
grateful I am significantly less symptomatic since the onset of ME/CFS
in 2015, but I am also aware how the many self-compassionate and
temperate changes I've made in my life due to my Stoic practices
help me listen deeply to my body's needs.
Surviving a major illness changes people.
The Stoic virtues of,
-
Justice
-
Moderation
-
Wisdom
-
Courage,
...tied together with the
concept and practice of
Amor Fati have helped me
flourish within my limitations, even though an outside observer may
not have that impression.
I now reach for these
practices when overwhelmed by symptoms, medical appointments, and
demands on my limited energy.
Stoicism gives us a way through life's most challenging situations,
and has the potential to shift unhelpful views about chronic illness
and disability on a much larger scale.
We need more witnessing
of this truth.
Stoicism gives us the
tools to do so...
References
-
Marcus Aurelius,
Meditations
- trans. Hays, Gregory. Modern Library, 2003. Book V,
section 8, page 56.
-
Statement from
the Chief Public Health Officer of Canada on July 7, 2021
-
Marshall,
Michael. The four most urgent questions about long COVID.
Nature. June 9, 2021.
https://www.nature.com/articles/d41586-021-01511-z
-
Valdez, Hancock,
et al. Estimating Prevalence, Demographics, and Costs of ME/CFS
Using Large Scale Medical Claims Data and Machine Learning.
Frontiers in Pediatrics. Jan 8, 2019.
-
Epictetus,
Discourses, Fragments, Handbook. Trans. Hard, Robin. Oxford
World's Classics, 2014. Discourses Book I, Chapter 1, verse
11, page 5.
-
In Frank
Herbert's science fiction novel, Dune, the main
character, Paul Atreides, is put through an initiation where
he must place his hand in a box that causes extreme pain. If
he removes his hand from the box, he will be killed
instantly by a Bene Gesserit priestess holding a "Gom Jabbar,"
a needle tipped with cyanide.
-
Meditations.
VIII, 32, pg 107. Trans. Hays
-
Meditations, V,
20, pg 60. Trans. Hays
-
The image in this
paragraph is Body Map (2016). Embroidered cotton thread on
linen by Lia Pas.
-
The Stoic
indifferents - things we have no control over - include,
-
health
-
wealth
-
property
-
social
standing
-
Meditations IV,
24, pg 42. Trans. Hays
-
The most infamous
case of this is Michael Sharpe's now disproven PACE Trial
results. Entry on Michael Sharpe and the PACE trial on
MEAction's Myalgic Encephalomyelitis Encyclopedia.
https://me-pedia.org/wiki/Michael_Sharpe
|