01/01/2021
End of the year reflections :: WHAT 2020 TEACHES US ABOUT CHRONIC PAIN AND DISABILITY
As this challenging year comes to an end, I’d like to share some thoughts about the connection between pandemic life and life. (A spoonie is a person who suffers from chronic illness.)
I have spent a lot of time this year reflecting on this watercolor drawing that my dear friend Erika Van Winkle and I created in November of 2019–just a few months before the initial lockdown. I posted our “Land of Chronic Pain” with a pre-pandemic caption that had a very Covid-like vibe. I spoke of isolation, exhaustion, a , and how “we’re all in this together.” Upon first glance, you might have thought I was talking about the emotional toll experienced by the global community this year. These feelings and platitudes have become so familiar to us in our collective 2020 experience. My 2019 wording may resonate with 2020 life because there is a striking parallel between the challenges that able-bodied individuals have experienced this year and those that people with chronic pain experience every single day. Pandemics, it seems, have a way of giving people a little taste of spoonie life.
Erika and I created the “Land of Chronic Pain” to raise awareness about the lives of those who suffer from chronic illness. It has always been hard for chronically ill individuals to communicate to healthier people the level of disappointment and grief that can come with diminished health. As much as someone can tell you about an experience, or attempt to convey it through art, living through it is entirely different. As the global pandemic unfolded and people were forced to stay home, cancel plans, face career and economic instability, cope with all different types of loss, and adapt to new ways of living, able-bodied individuals have had a brief snapshot of what life with chronic illness can be like and the frustration that often accompanies it. Below is a list of some of the ways the great divide between the ill and the well has narrowed this year.
HOW COVID LIFE IS SIMILAR TO SPOONIE LIFE
-grief/loss of a former way of life
-anxiety about health
-feelings of vulnerability
-slower pace of daily living
-desire for people to stay at least six feet away to avoid injury/illness
-constant risk assessment
-social isolation due to being homebound
-inability to work and financial uncertainty/hardship
-emotional exhaustion
-forced adaptation/modification of work and home life
-a constant state of crisis/focus on survival
-the feeling that life is on hold
-an appreciation for the small pleasures in life
-hopes for a cure
Living in isolation has taken a toll on people’s mental health, and this collective grief that so many are currently experiencing is palpable. Longing for the way life used to be is a thought I have had many times in the past, and it is not because of Covid. Grieving the loss of a former life is part of many spoonies’ journeys. For some, there is a stark line of demarcation—a before and after—a date when life changed forever; for others, disability arrived through a gradual decline in health.
For many people, mid-March 2020 feels like that moment when life went in a different direction. Despite this year’s difficulties, there is much that we have learned from our shared adversity.
LESSONS THE WORLD LEARNED THIS YEAR
-Being at home through circumstance rather than choice is not a vacation. It can detrimentally affect your mental health and leave you feeling isolated.
-Thinking about your health and constantly assessing the risk of activities can be exhausting and overwhelming.
-Interacting online is not as satisfying as getting together with people in person.
-Working remotely can be productive and valuable. Many businesses found ways to enable employees to work from home in a matter of weeks—an accessibility accommodation that the disabled community has been asking for for a long time.
-Having time to reflect and move at a slower pace can lead to insight and personal growth.
As we look ahead to the “Hope Horizon” of 2021, and as the world slowly returns to “normal,” I hope that there may be a new collective awareness towards those living with chronic illnesses. Approximately one in four US adults is disabled, and many long to feel better understood and supported by their communities. Although 2020 has been a difficult one in so many ways and for so many people, perhaps it will leave us with a more compassionate and empathetic society.
[Image description: A hand drawn watercolor map depicts a large land mass on the left, a smaller mass on the right, a body of water separating the two, and an island in the ocean between them. The area on the left is “The Land of Chronic Pain” and marks a journey called the “Pilgrimage for the Miracle Cure” with dotted lines and small illustrations. The dotted lines meander around the “Land of Chronic Pain” indicating different steps along the journey including: “Endless Appointment Pits,” “Spoon Garden,” “‘But You Look Fine’ Fault Zone,” “Lake of Loss,” “Physical Therapy Town,” “Pharmacy Phorest,” “Homeopathy Hamlet,” “Misdiagnosis Mountains,” “Comparison Canyon,” and “Temporary Relief Oasis.”
The “Charlatan Healer Cruise Line,” covered in dollar signs, floats in the “Ocean of Isolation,” offering false hope as it sails towards the “Land of the Well.” “I Am Not My Pain Island” is prominent in the lower portion of the ocean. Small x’s, indicating “Pilgrim Shipwreck Sites,” litter the coast, symbolizing failed attempts to reach the “Land of the Well.”
The inviting warmth of the “Hope Horizon” stretches across the top of the image and promises better days ahead.]
🎨: & .strivingtogether.care
🖊: .strivingtogether.care
#2020
