The Semiotics of Pain 2018 MFA Thesis
Guewon Kelly Park @gwkellypark
gwkellypark.com School of Arts, Technology, and Emerging Communication The University of Texas at Dallas
flickering itchy
cramping boring
quivering smarting
itchy crushing
drilling pusling
stinging
beating
pounding hurting
Pain is complex.
cutting jumping
aching
hurting
lacerating flashing
heavy
aching scalding
pinching shooting pressing
tender pricking
tight
fearful dreadful
drawing
terrifying
frightful torturing
squeezing miserable
punishing
suffocating agonizing
troublesome
tender tingling
nauseating
annoying
heavy
sickening
numb
frightful
searing
piercing
binding fearful
exhausting nagging
wretched
suffocating
boring
freezing
killing
sore
tiring
penetrating
sickening
hot
cold
vicious
dull
splitting
radiating
exhausting
wrenching
sharp
spreading
tiring
pulling
rasping cool
cruel
stinging
lancinating
sore
splitting
tugging
throbbing
unbearble taut
smarting
stabbing
dull
rasping
terrifying intense
tearing
punishing
The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
“If pain were assessed with the same zeal as other vital signs are, it would have a much better chance of being treated properly.” — James Campbell
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The Semiotics of Pain · MFA Thesis
CONTENTS
03 WHY PAIN?
04 Introduction
05 Discovering the Problem 10 From Verbal to Visual
11 COMMUNICATION OF PAIN
12 Research Methods
13 Information Architecture
15 The Semiotics of Pain 17 Research Insights
26 DIGITIZING PAIN 27 Visualizing Pain
30 The Pain Lexicon
34 Communication Model 36 CO-CREATING THE PAIN LEXICON 37 Redefining Pain
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Guewon Kelly Park · gwkellypark.com
I. WHY PAIN? DISCOVER UNDERSTAND EMPATHIZE
The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
INTRODUCTION My father passed away a month before my wedding, a year before my
Pain affects more Americans than diabetes, heart disease and cancer
interpreter, I learned that nerve pain is very difficult to describe. That he did
care system. Chronic pain is the most common cause of long-term disability
graduation. He suffered from Parkinson’s. As his caregiver and unofficial not speak English made his pain even more ambiguous to his doctors.
combined, and pain is the most common reason Americans access the health and is a major contributor to health care costs.
Parkinson’s symptoms • Muscle rigidity
• Abdominal pain • Joint pain
• Numbness • Tingling • Burning
• Dizziness
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Our experiences with pain are universal, yet unique.
The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
DISCOVERING THE PROBLEM
Patients need to read and understand many documents to navigate the complex healthcare system. Excluding medical insurance policy booklets,
patients typically fill out 5 to 20 pages of intake form every time they visit a new doctor.
For example, below the forms I filled out when taking my father to the doctors. • New Patient
• Medical history
• Medication and Allergy list • HIPAA
• Acknowledgment of Receipt of Notice of Privacy Practices • Prescription History Consent
• Patient Pain and Fatigue form In another occasion, the patient intake form was
24 pages long because it was bilingual, written in English and Spanish.
An empathy map helps visually convey feelings that patient have during healthcare experience.
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The Semiotics of Pain ¡ MFA Thesis
Guewon Kelly Park ¡ gwkellypark.com
DISCOVERING THE PROBLEM
How can we be comprehensive and also comprehensible when communicating our pain? 406 words 22 questions 220 possibilities
Short Form McGill Pain Questionnaire
150 words 20 sections 78 questions
McGill Pain Questionnaire
The McGill Pain Questionnaire is one of the most frequently used pain assessment forms. It is not easily understandable by
Limited English Proficiency (LEP) patients because it mainly uses verbal communication. Patients need to read and understand more than 400 words to communicate their pain. This process itself is painful.
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
DISCOVERING THE PROBLEM
Pain assessment tools are challenging for non-English speakers.
50 40 30 20
CRPS Childbirth Amputation Finger/Toe
Chronic Back Pain After Shingles Nerve Pain Arthritis
McGill Pain Index
0
McGill Pain Questionnaire
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2
3
4
5
6
7
8
9
10
Visual Analogue Scale
Visual Communication
Visual Communication
Visual Communication
Context
Context
Context
Intensity
Intensity
Intensity
Characteristic of pains
Characteristic of pains
Characteristic of pains
Non-English Friendly
Non-English Friendly
Non-English Friendly
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The Semiotics of Pain ¡ MFA Thesis
Guewon Kelly Park ¡ gwkellypark.com
DISCOVERING THE PROBLEM
Language barriers at home are compounded in healthcare settings. LANGUAGE SPOKEN AT HOME
20% (1 in 5) of Americans speak a language other than English at home.
ENGLISH PROFICIENCY
40% 20%
40% of this population are considered Limited English Proficiency (LEP).
Pain is complex. Communicating pain is even more complicated. According to 2016
Elaine Scarry, author of the seminal book The Body in Pain, notes the
than English at home, and 40% of them speak English less than
pain is challenging. Pain assessments like the McGill Questionnaire seek
communication. A language barrier in healthcare negatively affects
idiographic and idiopathic.
U.S. Census data, one in five Americans speaks a language other
inexpressibility of pain. Even for native English speakers, describing
very well which means that they have language barrier in everyday
to describe pain through nomothetic constructs, although pain itself is
social and racial disparities, patient-provider communication, health literacy and self-agency of patients.
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The Semiotics of Pain ¡ MFA Thesis
Guewon Kelly Park ¡ gwkellypark.com
DISCOVERING THE PROBLEM
Technological solutions are limited. Chinese 76%
24%
Urdu
50%
50%
Swahili
37%
63%
Spanish
32%
68%
Portuguese
32%
63%
5%
German 21%
37%
42%
Korean
16%
Vietnamese
11%
89%
5% 21%
74%
French
Inaccurate
37%
Adequate
47%
Accurate
One might think that a language barrier can be easily
overcome by using technology such as Google Translate. But communicating pain is not a simple as knowing the meaning of the words. I translated 38 pain words using
Google Translate and verified the accuracy by bilingual speakers in 9 different languages.
English
Portuguese (Google)
Aching
Doendo
Biting
Mordendo
Blunt
Franco
Burning
Queimando
Cold
Frio
An excerpt from Excel document. Each bilingual speaker marked the accuracy of the translation by coloring the column next to the column of words translated using Google Translate.
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
FROM VERBAL TO VISUAL
Visual communication may offer language-independent options. The Semiotics of Pain is a method of pain assessment using a visual expression such as colors,
lines, and shapes to visualize pain. This method encourages the patient to express their pain in a
non-verbal way, which can be tremendously beneficial to patients with Limited English Proficiency, and cognitive disabilities as well as children with limited vocabulary to describe pain precisely.
This method stimulates associative learning and augments health literacy of LEP patients. This
method assists more meaningful engagement between patients and providers and gives providers another perspective on pain, which can lead to a more accurate diagnosis.
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GORGE
LABIOS
PHỔI
발목
French
Spanish
Vietnamese
Korean
The Semiotics of Pain · MFA Thesis
II. COMMUNICATION OF PAIN DEFINE RESEARCH ANALYZE SYNTHESIZE
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Guewon Kelly Park · gwkellypark.com
The Semiotics of Pain · MFA Thesis
RESEARCH METHODS
Guewon Kelly Park · gwkellypark.com
My process was informed by a variety of research methods. INFORMATION ARCHITECTURE • Semiotics • Taxonomy • Card sorting • Multilingual translation
USER EXPERIENCE DESIGN • Empathy map • Concept map • Journey map • Storyboards • Wireframing
SOCIAL SCIENCES • Questionnaire • Literature review
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
INFORMATION ARCHITECTURE
There are many different ways to classify and categorize pain. “Pain can be classified according to which parts of the body are involved or according to what causes the pain. Often no cause to a person’s pain can be found (idiopathic pain)” (Møller, 2014).
Pain
Physiological pain (Pain receptors)
Somatic Pain
Visceral Pain
Fast Pain Slow Pain
Referred Pain
Pathological pain (Not Pain receptors)
Inflammatory Pain
Central Neuropathic Pain
Lesions to nerves or CNS
Muscle Pain
An example of the classification of different forms of pain. Data from Woolf, C.J. and M.W. Salter, Neuroplasticity: Increasing the gain in pain. Science, 2000. 288: p. 1765‑1768 [489] (Artwork by Irene Cunha.)
A snippet of my attempt of pain classification using 78 pain descriptors from McGill Pain Questionnaire.
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The Semiotics of Pain ¡ MFA Thesis
Guewon Kelly Park ¡ gwkellypark.com
INFORMATION ARCHITECTURE
Doctors and patients sometimes use different words to describe similar pain.
Spatial display of pain descriptors based on intensity ratings by patients. The intensity scale values range from 1 (mild) to 5 (excruciating). Mehack, R., & Torgerson, W. S. (1971). On the language of pain. Anesthesiology, 34(1), 50-59.
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
THE SEMIOTICS OF PAIN
I developed a visual system to communicate pain type and intensity. SENSORY
SPATIAL
PUNCTATE PRESSURE
INCISIVE PRESSURE
CONSTRICTIVE PRESSURE
TRACTION PRESSURE
THERMAL
BRIGHTNESS
DULLNESS
SENSORY MUSCULAR
SENSORY NEURAL
AFFECTIVEEVALUATIVE
LESS
TEMPORAL
AFFECTIVE
Quivering
MORE
INTENSITY
Pulsing
I visualized signs of pain to communicate unique characteristics of pain based on McGill Pain Questionnaire categories. I visualized 41 types of pain. Here you can easily scan different types and intensity of pain.
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The Semiotics of Pain ¡ MFA Thesis
Guewon Kelly Park ¡ gwkellypark.com
INFORMATION ARCHITECTURE
A card sort workshop helped me understand mental models of pain.
The goal of the card sort was to discover how people associate and
At first, participants quickly sorted the cards with gut instincts. Later, they
which means participants can create their own categories instead of using
cards if they thought the pain does not belong to the group. Participants
categorize different kinds of pain. It was conducted as open card sorting, predetermined categories.
Time
Thermal
Sharp
dragging
hot
piercing
comes and goes
burning
penetrating
constant
16
pricking
added cards if they thought certain kinds of pain are missing or removed had a total of 38 cards.
The Semiotics of Pain ¡ MFA Thesis
Guewon Kelly Park ¡ gwkellypark.com
RESEARCH INSIGHTS
The meaning of many words were unclear to graduate-level students. As participants sorted pain, I asked them to put a question mark next to the
words that they did not understand. Surprisingly, about half of the words were unfamiliar to graduate-level students.
3 excruciating 3 smarting 2 pricking 2 blunt 2 gnawing 1 scratchy 1 penetrating 1 biting FAMILIAR
50%
UNFAMILIAR
50%
1 spreading 1 dragging 1 stinging 1 dull 1 throbbing 1 nauseating 1 tender 1 intense 1 tingling 1 nagging 1 numb
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
RESEARCH INSIGHTS
Many workshop participants used common visual metaphors to describe their own pain.
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BURNING
PINS AND NEEDLES
PRICKLING
DULL
NAUSEATING
CONSTANT
COMES AND GOES
CRUSHING
The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
RESEARCH INSIGHTS
Visual metaphors can quickly convey meanings.
ONE OBJECT
MORE THAN ONE OBJECT
BODY PART
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
RESEARCH INSIGHTS
There are common thread in use of color and shapes. NAUSEATING
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2
3
4
5
6
7
8
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10
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
RESEARCH INSIGHTS
Nauseating pain is visualized 2 visual types. Green + Spiral
Human
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
RESEARCH INSIGHTS
There are common thread in use of color and shapes. RADIATING
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2
3
4
5
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
RESEARCH INSIGHTS
Radiating pain is categorized 5 different ways. Directional
Concentric
Wavy
Rays
Human
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
RESEARCH INSIGHTS
Synonyms are visualized synonymously.
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SMARTING
TINGLING
PENETRATING
PIERCING
The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
RESEARCH INSIGHTS
Image sorting revealed unexpected synonymous pain. Participants associated one visualization with multiple pains. Pain often consists of multiple layers.
10 UNIQUE CATEGORIES
4 UNIQUE CATEGORIES Avg. Pos. 1.0
Freq. 5
burning
1.0
2
quivering
1.0
2
sore
1.0
1
hot
BURNING
Avg. Pos. 1.0
Freq. 1
cool
1.5
6
freezing
1.5
2
numb
3.0
1
boring
COOL
Avg. Pos. 1.0
Freq. 3
freezing
1.0
1
hurting
1.0
1
dull
1.4
5
numb
DULL
Avg. Pos. 1.0
Freq. 1
flashing
1.0
1
hot
1.0
1
hurting
1.0
1
pricking
1.0
1
searing
1.0
1
stabbing
1.0
1
flickering
2.0
1
burning
3.0
1
dull
6.0
1
beating
Avg. Pos. 1.0
Freq. 1
boring
1.0
1
crushing
1.0
1
drilling
1.0
1
dull
1.0
1
gnawing
1.0
1
lacerating
1.0
1
nagging
1.0
1
numb
1.0
1
pulling
1.0
1
cramping
SCRATCHY
DRILLING
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III. DIGITIZING PAIN IDEATE CREATE ITERATE EXPLORE
The Semiotics of Pain ¡ MFA Thesis
Guewon Kelly Park ¡ gwkellypark.com
VISUALIZING PAIN
Complexity of pain cannot be fully expressed using words or simple drawings. In order to digitally visualize pain, I attempted to create an application where users can select different visualization methods to visualize pain. I quickly realized that the complexity required multiple modes.
Patterns
Tools
Word bank
Palette 27
The Semiotics of Pain ¡ MFA Thesis
VISUALIZING PAIN
Guewon Kelly Park ¡ gwkellypark.com
The complexity of pain cannot be fully expressed using words or simple drawings.
Pain is multidimensional. Many participants chose pen or color pencils. I chose watercolor and clay as my
medium because when I first visualized the pain, I realized I needed opacity and dimensionality to express pain. Pain is not static. Pain is constantly evolving.
Therefore, I thought moving pictures might be more suitable for visualizing pain.
Why did you choose the medium you use?
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The Semiotics of Pain ¡ MFA Thesis
Guewon Kelly Park ¡ gwkellypark.com
What kind of pain is this?
Nauseating
Pricking
Beating
Penetrating
Cutting
Sore
Pain visualizations using watercolor (2-dimensional).
Pain visualizations using clay (3-dimensional). 29
The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
THE PAIN LEXICON The Pain Lexicon is a crowd-sourced library of pain, which prepares patients
to become competent in explaining and expressing their pain. This archive of user-created videos enables users to share and learn from each other.
By nature, pain is complicated. It is hard to communicate with just words
re
n
ca
tio
he
Lo
W
Pain
learn and apply other metaphors to gain competence in explaining and understanding pain. It is a patient-centered pain assessment. The Pain Lexicon focuses on three major features of the pain: • Where is the pain? (Location)
• What kind of pain? (Characteristics) • How bad is the pain? (Intensity)
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t h a r is tic
The goal of the Pain Lexicon is to create an archive where patients can
c te
Enriching the Vocabulary of Pain
W
and more accurate diagnosis.
ar a
transformation of the pain. Better comprehension of pain may yield faster
Ch
or static images. The videos will help to better capture the complexity and
How
Intensity
The Semiotics of Pain ¡ MFA Thesis
Guewon Kelly Park ¡ gwkellypark.com
COMMUNICATING PAIN
Capturing and sharing the pain as a video. The Pain Lexicon can be used during person-to-person
interactions (such as in healthcare settings, workshops, etc.) to facilitate understanding between parties, or in an individual
setting, using an app. The app aims to help individuals better
Where?
understand their pain as they attempt to communicate it. The app prototype below describes its use in an individual setting. App Prototype Description
Each user will be asked to visualize their pain by taking
a 6-second video using a household item to express their pain. In this way, we can transcend the language barrier.
First, the user will indicate the location of the pain by placing the problem area in the center of the square.
Next, the user can either start shooting a video using household items to represent the pain. For example, using a fork to poke the mannequin represent pricking pain.
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
CAPTURING PAIN
The Pain Lexicon will create a robust archive.
After shooting a video, the user will tag the location and characteristic of the pain.
The app will help by showing per-categorized word bank of pain. Also, the user can narrow down the kind of the pain by answering a few questions like: • Is your pain sharp or dull?
#BackPain
• Is your pain constant or comes and goes?
• Does your pain get worse as time goes by? or selecting a metaphor such as:
Using tags the user can view videos of specific kind of pain as a whole.
For example, the user can browse all #BackPain. In this way, the user can find
similarities and possibly even discover a perfect video that represents their pain at the doctor’s appointment.
After videos are saved, they will be converted to .GIF image format so that user will be able to browse through without playing the video.
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Related:
#Sore
Top
#Sharp
#Pulling
#Shooting
Recent
The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
#Sharp
#Pricking
#Squeezing
#Worsening
#Throbbing
#Grating
#Knee
#Shoulder
#Wrist
#Radiating
#Arm
#Back
#Pain
#Pain
#Pain
#Body
#Pain
#Pain
#Pain
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The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
COMMUNICATION MODEL
A language barrier inhibits with a precise decoding of pain in traditional pain communication. Idea Encode
Sender
Verbal Message Language Barrier Traditional Pain Assessment Feedback Message
Decode Check
Decode
Receiver Perception Encode
Noise
Schramm’s Encode-Decode Communication Model (diagram adapted from: Communication Theory. (n.d.). Retrieved from https://mosaicprojects.com.au/WhitePapers/WP1066_Communcation_Theory.pdf.
Traditional pain assessment such as Wong-Baker’s FACES or McGill Pain Questionnaire does not aid
the patient (sender) to encode their pain precisely. Therefore, there is miscommunication due to the language barrier. 34
The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
COMMUNICATION MODEL
Using metaphors and visualization can aid encoding and decoding of pain communication. Idea
Verbal/Visual Message
Encode
details • Metaphor • Visualization
Patient
Decode Language Barrier
The Pain Lexicon
(Sender)
(Receiver)
Feedback Message Decode Validation
Provider/ Caregiver
Empathy
Perception Encode
Noise
Pain Communication Model using the Pain Lexicon
Based on the Wilbur Schramm’s Encode-Decode Model, I created a pain communication model using the Pain
Lexicon. With the help of more universal metaphors of pain, the Pain Lexicon aids better communication: more details, less noise, reduced language barrier. Above all, the receiver can empathize sender better.
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IV. CO-CREATING PAIN LEXICON ITERATIVE PROCESS
The Semiotics of Pain · MFA Thesis
Guewon Kelly Park · gwkellypark.com
REDEFINING PAIN
Co-creating workshops will populate diverse definitions of pain. The Pain Lexicon workshop PURPOSE
INTENDED AUDIENCE
RULES
definitions of pain to explain and empathize each
experienced pain at least once in their life time, the
• 6 second videos (small enough to convert to GIF)
The goal of the workshop is to co-create visual other’s pain.
METHODOLOGY Design Charrette LOGISTICS
The workshop will take approximately 1-1.5 hours.
Participants need to bring their own mobile device to
Since pain is universal, and everyone has
audience for this workshop can be anybody. It would be interesting to have participants from diverse
Three hashtags:
are different from one culture to another. Different
• the location of the pain
how colors, shapes, and forms representing pain colors may have different connotations in various cultures.
INSTRUCTIONS
MATERIALS
create 6-second videos of the pain. After creating a
• Kitchen utensils • Office supplies
Each participant will use their mobile device to
video, participant must add 3 required hashtags and
• the kind of the pain • #Pain
Video structure:
1 Where?
2
3
4
5
6 seconds
What kind? How bad?
share
to social media tagging two or more friend or family.
Print-outs:
CONSTRAINTS
• Word bank of different kinds and locations of pain
• Where is pain located?
• Wooden mannequin
• Portrait format
age group and cultures to be able to compare
record video.
Various household items:
Format:
All videos need to indicate following: • What kind of pain?
• How bad is the pain?
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Pain is complex. emotional. universal. temporal. subjective. mysterious. complicated. evolutionary. multidimensional.
And this is only a beginning.