Pivot Collection
Meiners created this first collection to communicate her emotions and cope with her sudden loss of independence after suffering multi-organ damage from COVID-19. Unable to tolerate any light or sound during this time, and with no previous experience in the art world, Meiners created this collection from pure emotion and her imagination. The collection is posted in chronological order so the viewer can join the artistic journey.
Groundhog Day
Completed July of 2022, painted over a nine-month period in which one brush stroke would trigger severe fatigue, cognitive decline and relapse into seizures. Completely bedridden during these nine months, this painting sat next to my bed in the dark room where I would glance at it often to plan the next stroke. It signifies the unpredictable good days/bad days in symptom severity. Good days: I can sit up for a short period in bed, am aware of where I am and who I am, and can handle a whisper conversation with my kids. Bad days: non-stop uncontrollable seizures and extreme pain such that staying alive until the next breath feels like an impossible task. The brighter colors signify "good days," though even those are filled with seizures, migraines and significant memory loss.
Memory Loss Collection
This collection was completed slowly over the first year of illness when I had very limited access to any long-term memories. When feeling well, I would try to recall important events or time periods in my life and would verify the legitimacy of the memory by asking others who were around during that time period. Strangely, earlier childhood memories were the first to return. Two years into recovery, the past 10-15 years are still largely inaccessible.
These paintings were created using images, colors and textures representing specific memories or timeframes and then strategically whitewashed so that small portions of the original painting remain, thus representing my fractured memory of the past 46 years.
Dark Days Collection
The vast majority of the entire first year of illness was spent in a room darkened with black trash bags on the windows while wearing noise cancelling headphones. Any source of light or sound triggered excruciating pain. Completely bedridden yet awake, I needed to find ways to pass time. Memories that were emotionally charged or involved thoughts of movement often triggered violent seizures. Most often I reflected on what I was grateful for: a soft warm bed, the support of family and friends, my doggie, and the 46 happy years I had prior to this illness. Other days I’d focus on one specific memory such as the pattern of movement on the lake water or the gentle movement of a breeze on trees. Often, though, I would just look at the images that arose on my darkened eyelids, and at times with the swelling on my brain there were brilliant colors. Other more painful days were filled with just darkness and flashes of light from the painful brain injury. During these days (and weeks) my brain couldn’t handle any thoughts, prayers or simple meditation. Each of these involved words, which was too much for my brain and body to manage without triggering seizures. These images are inspired by the rough days.
Gaslighting
16x20 acrylic and oil pastel on canvas
It seems impossible that I went from being an involved mom of three, a busy leader at my university workplace, a volunteer on several charity boards and a health and fitness fanatic to feeling drugged and confused 24 hours a day. I was completely bedridden, unable to walk or talk, and needed care for all aspects of life.
When I sought local medical care, I was told that they had “never seen COVID cause this much illness after a mild case.” Therefore it must be psychosomatic, anxiety and depression. I was told to think positively and push myself to exercise. In the midst of my cognitive loss and confusion, I believed the physician. I was devastated that I had self-sabotaged my life and lost my ability to walk, talk and think, and even interact with my kids. Though I didn’t understand what was going on, I blindly followed the physician’s advice and regularly rode a recumbent bike until the seizures knocked me to the floor. I managed to track my “progress” by holding a huge kid’s crayon because my motor skills were too poor to use a phone or hold a pencil. Over the next two months I tracked my steep decline as I progressively worsened. It wasn’t until month nine that I went to the Mayo Clinic and saw new physicians who confirmed the multi-organ damage caused by COVID. I was told that I was among the most severe cases they had seen post COVID, in the unlucky 1-2% of most affected long COVID patients. The seizures, migraines, cognitive loss and multitude of other issues all had a physiological basis. I sobbed with joy when I was finally told that my illness was wasn’t in my head.
Summer Memories
24x36 acrylic, graphite and oil pastel on canvas.
Being isolated and bedridden in a dark, quiet room has its challenges, never more so than during the summer months. Summer has always been my favorite season. I love being outdoors, and the long days and warmth of the sunshine on my skin brings me joy. Now the soft breeze feels like sandpaper on my skin, birds singing sound like fingernails on a chalkboard, and the sunlight causes head pain so severe that it triggers myoclonic seizures that drop me to the ground. The isolation and loneliness weigh especially heavy during the summer, but instead of dwelling in the sadness I found it comforting to focus on the positive memories of all the summers I did have: happy memories of the lake, BBQ competitions, wine and laughter with neighbors, and playing soccer and basketball games against my children. I remain hopeful for next summer …
Insomnia
18x18 acrylic, oil pastel and graphite on canvas.
Each day I wake with a racing heart. I feel hungover, like I have the flu, like I have just run a marathon and am covered with a thick layer of concrete. Did I even sleep? It takes a minute to orient myself to the room and realize that yes, I’m still sick, no longer have a job, can’t take care of myself, and that my daily goal is just to stay alive.
Motherhood
Each 18x18 acrylic and oil pastel on canvas.
Series of three based on each of my children. Being trapped in bed was especially difficult because I knew I was missing my most importing job: being a mom. During the first year I missed my oldest son’s important college events, such as parents’ weekend. I missed my daughter’s senior year in high school and all of her theatre performances, including one where she had the sought-after lead role. My youngest son was in grade school and involved in almost every sport, and I didn’t see a single one of his games. All of those important events, where children expect the love and support of their parents, I was missing.
Even more challenging is my struggle to make new memories: each day I wake up and expect my children to be the same age they were in October of 2021. Each day my heart hurts as I try to remember that they are quite different people than they were when I got sick. The textured white semi circle in each piece represents my memory loss and that each day I need to remind myself that my children are two years older and completely different people. Not only have they aged and taken on new interests and hobbies, but having to care for me has forced them to grow up quickly.
Gratitude
36x24 acrylic on canvas
As I reflect back on the first year, I often wonder how I survived. The constant seizures and migraines, along with memory loss and the awareness that life was carrying on without me, was especially difficult. The pain was overwhelming and words can’t adequately describe the intensity of the suffering. I couldn’t tolerate any light, sound, or movement, which left me in a literal dark and lonely place. Despite the difficulty, during this time I rarely thought negatively of my circumstances and instead felt gratitude for what I did have: comfortable bed sheets, soft pajamas, a safe place to rest, an amazing and supportive husband, three kids and a group of friends who daily congratulated me on surviving. Though the suffering was overwhelming, so was the outpouring of support from my family and friends. I would not have not survived without them.
Delirium
16x20 acrylic, graphite and oil pastel on canvas
“Brain fog” would be a more recognizable description for this piece, however that term doesn’t adequately describe the extent of brain damage nor the crippling cognitive impairment. This piece depicts my time spent in confusion: a complete unawareness of the passage of time, day of the week, where I was at or even who I was. My brain fog left me unable to walk independently, dress myself, manipulate silverware or follow conversations, and I had a constant unshakable drugged feeling. At times this experience was accompanied by intense fear, but more often I was unable to experience any emotion at all. When intense emotions did arise, it was like coming up briefly for air while drowning. In those moments I could see all that I had lost and the wreckage of my body and life. For a brief moment I understood why there is such a high suicide rate with severe long COVID. The anguish was unbearable. My brain would be overwhelmed by the emotional stimulation and would quickly fall back into this confused drug-like state. I was grateful to be numb.
Flow
36x24 acrylic on canvas
To an outsider looking at my homebound life, it would seem quite a lonely and depressing existence. However, I’ve managed to find an inner peace and joy in places I never thought possible. My relationship with time is different: days and weeks fly by because of my difficulty making new memories. Though I can no longer enjoy many of my previous simple pleasures such as music, reading, exercise, and coffee, my days are now filled with efforts to enhance healing such as meditation, seated Tai Chi, speech therapy, and painting in small increments. For the first time in my life I’m comfortable in my own skin and don’t feel the need to achieve or impress others with my accomplishments. Surviving is enough. Though some days are still incredibly challenging, I have found peace in the simple aspects of life.
Insignificant
16x20 acrylic and oil pastel on canvas
What was once a bright and brilliant life is gradually erased day-by-day as I lie in bed in a dark, quiet room. I’ve gone missing, and as time passes I slowly fade away from daily life and from the memories of friends and family. I am missing and now forgotten. My greatest fear is that I will no longer be remembered for the active, busy, fun-loving person I once was. I’ll simply disappear.
Window view
36x24 acrylic and graphite on canvas
In August of 2023 it became possible to open the blackout shades after 22 months of darkness. Still unable to tolerate light and sounds outside for any length of time, this painting gives tribute to the hope of venturing outdoors and is inspired by my new view of the world.
Home
18x18 acrylic, oil pastel and graphite on canvas
Life has become more comfortable trapped inside the walls of my home. Though I can’t stand longer than five minutes without becoming unsafe, I have gained independence with use of a power wheelchair and other aids. I’m forever indebted to my family and friends who still bring me meals and visit me two years into this ordeal. I would love to be able to rejoin the world, but after several minutes of stimulation outside the house my brain gets overwhelmed and I quickly lose cognitive and motor functions. Worse yet, I suffer for days to weeks afterward with intense neurological symptoms and am again bedridden. As I lie in bed, I don’t even have the memory of the excursion outside that caused the “crash” in the first place.
I feel fortunate to have met many other folks in online communities who are suffering from severe long COVID. Some are slowly improving like I am, but others have unfortunately passed away from this devastating disease. I’m so fortunate to be able to tell my story. Though you don’t see them in the media or in your community, please know there are millions of others like me who are suffering in silence from their bedrooms and homes. The SARS-COV-2 virus has caused permanent organ damage and triggered multiple other chronic illnesses including severe ME/CFS and POTS. There is no cure, only medications to help with symptom control. I had no pre-existing risk factors prior to my illness; this can happen to anyone after contracting COVID. Please help raise awareness and support for those suffering like myself. We desperately need help.
A special thanks to Cisley Thummel, Charlie Hanger, Kimberly Kolkovich, Danny Rojas, Johnny Meiners and Jakob Lowman. I wouldn’t have been able to tell my story without you.