Keeping perspective after Long COVID

Before her illness Beth led an active and creative life. Growing up in Florida she enjoyed sports and was an avid swimmer. She was an artist who enjoyed using different mediums such as painting, sculpture, working with metal, and printmaking. She went to college in Georgia and became a cartographer which offered an outlet for her artistry. She lived in California and Hawaii before moving to Massachusetts to be near her daughter who was starting her family.

Her five adopted grandchildren became a major focus of Beth’s life as she helped to raise them. She took care of them if they were sick, had them for overnights, and taught them to swim. Beth would cook family meals and host large holiday dinners.

She spent her days swimming, gardening, visiting friends, and going to farmers markets, and she loved thrift shopping. She worked in the mental health field and became an advocate to provide services for those in need.

When the pandemic hit, she was very careful to take necessary precautions and stayed healthy and safe during the first year of quarantine. She made the best of her situation, transforming her grandkids’ playroom into an art studio and spending her days painting watercolors.

When her grandchildren began to come over again, she found a way to express her art in the moment and recycled and repurposed their discarded face masks. She would cut them up and weave them into designs, like a tapestry. It was her way of documenting that period in her life.

When she contracted COVID, however, her life changed drastically. She felt extremely ill for much longer than the typical acute phase, and her doctors and those around her didn’t understand how sick she was. Her primary care doctor wasn’t knowledgeable about Long COVID and told her that the only people who could get this were those who were hospitalized. She experienced medical gaslighting from her neurologist who dismissed her concerns by saying that what she was feeling was anxiety and depression.

Finally, after she was sick for around 6 months, her endocrinologist was the one to diagnose her with Long COVID and likely ME/CFS. She developed Dysautonomia and orthostatic intolerance. She was getting little to no sleep, experiencing extreme sensitivity to light and sound, had a decline in cognitive function, was unable to stand or sit, and even swallowing was a challenge.

She had to educate herself on these conditions. She learned about PEM and how she felt the effects of activities 2-3 days later. She learned about pacing, which was a very hard learning curve.

She got a new doctor and began self-advocating  for accommodations. She seeks telehealth options when available and if it must be an in-person visit, she requests a room with low lighting close to the front door, and will lie down while waiting for the doctor to come in.

Because her body is in a constant state of high alert, she focuses on calming her sympathetic nervous system, to help the body to “rest and digest” and promote a calmer state of being. She uses tools such as meditation and visualization and has developed simple rituals to help her mind and body. Now that she can’t be in nature as much as she likes, she finds solace in simply stepping outside or looking through her window. She remains in a state of gratitude for the things she has, such as a comfortable home, or the ability to make food for herself.

While researching online she came across the MassME website and its wealth of information. She immediately felt welcome when she reached out to Patient Services volunteers who provided links to valuable resources.  She reads the newsletters and attends Sunday Conversations regularly. Most importantly she appreciates the support meetings which help her to keep perspective and feel heard and validated by a group of people who understand. She became an active participant of the MassME members Facebook group, which she appreciates because it allows her to self-modulate how much she engages. She finds our community one which generously shares knowledge, experience, and compassion. 

Creating physical art as she has done in the past is difficult for her to do now but it doesn’t stop her artistic process. She will envision images she would like to express, but doesn’t have the energy to recreate these. Instead, she finds her artistic expression in her garden, through cooking, and storytelling. She does her best to adapt to her situation, such as using a runner’s flask with a straw so she can sip water while lying down.

While she sees this illness as a trauma that is not going to go away, she is not bitter about getting ill. She is disappointed that there isn’t always access to safe and accessible healthcare. Through it all, Beth is  determined to keep perspective and continue to love and appreciate herself. “I am ok, and not mad at my body or the world.”

Below are photos of some of Beth’s artwork that she made during the pandemic, including the facemask weavings. The watercolor was the last piece of art she made before she became ill.

These are approximately 6”-7” square panels of woven strips from various n95 masks and respirators that my Grandchildren and I have worn.  
They were sewn onto paper and made from 2020-2022. 

Watercolor on Bristol board
24” x 24” February 2021