Brandi-Ann Uyemura
Every morning I open the curtains in our new house. The house. The one I dreamed about for ten years. The windows face a lake and the beautiful Hawaiian mountains. The window in the master bedroom frames the Ko’olaus. My life from the outside appears dreamy. But I would never know as I haven’t left my house since 2023.
On New Year’s Eve, I lay in bed, tossing and turning, jumping as intermittent fireworks infiltrate the Hawaiian night sky. I am terrified of 2024 and the fear of what it could bring. Every New Year’s Day for the last several years began with a rough start. A robbery, an ER visit, and then 2024.
I wake up to an unsettling fatigue. I brush it off as the lack of sleep I have carried from the year before. I tuck it away because I am banking on 2024. All my hope rests on a solid year of joy after suffering through my mother’s and uncle’s death, the pandemic, my son’s accident.
This is going to be the year I take my sons on a real trip. Maybe to Disneyland. Definitely to California. The way it used to be when they were little, before Covid existed, when life felt normal.
By this point, everyone I knew had taken one of those, “I deserve this trip for staying home with my kids for a year.” This is the fourth year of the pandemic. I intentionally kept my world small, homeschooling my kids, enrolling them in online school and then finally sending them to the only school that still mandated masks. I couldn’t afford to get Covid. It took me three months to recover from Pfizer. How would my body cope with the virus?
During the third year of the pandemic, I yearned for normalcy — not just for myself, but for my kids. My son was turning 10 so I gave in to doing a fun, but maskless, party. I was gifted with my first bout of Covid. Thankfully, his symptoms were mild and only lasted a few days. I also survived what felt like extreme fatigue after two weeks. But it was the second time I got sick a few months later that led to long Covid. I haven’t been the same since New Year’s Day. This fatigue is like wading through quicksand or running in water. The constant dizziness feels like I’m inebriated. The worst is the vertigo and the constant rocking as if I am on a boat. Long covid knocked down that bucket of hope. Survival became my own goal.
My days are groundhog days. I am full of despair as I open my bedroom curtains at 8 am and close them at 5 pm every day with not much happening in between. The home I wished for has now become a prison. I watch the world zoom past my window. I spend my time on Reddit and Google searching for answers, searching for a gold standard disease reversing pill that can return my life to me. The irony is I used to wish I was hospitalized so I could rest. Life with two young boys was draining me to the core. Last year, I told my husband, “I need a lot of boring days in a row.”
Many believe long Covid and Chronic Fatigue Syndrome is due to an overactive nervous system. Trauma, chronic stress and fear can leave you in a constant state of fight or flight without the ability to rest and digest, and it can do so without your conscious awareness. In The Fear Cure, Lissa Rankin, MD, says, “No matter how much willpower you have and how motivated you are to heal, you can’t just will yourself to be free of these kinds of fears, because the fear stems from unconscious processes, and hooks into the most primal part of the nervous system. Even knowing that the fear is irrational doesn’t help, because the fear response is bypassing the cognitive mind, going straight from zero to terrified in the primal nervous system, without engaging the thinking, rational forebrain.” When the sympathetic nervous system is on overdrive, dealing with an illness or coping with its aftermath can unconsciously trigger fear. In theory, it could be responsible for the mysterious symptoms I struggled with for years.
I took an online course by Dr. Becca Kennedy who was part of the Kaiser long Covid group in Portland and Washington. She similarly believes long Covid patients are being triggered by unconscious, repressed emotions of fear. The class gave me focus; instead of worrying, I spent my days meditating, doing breathing exercises, tai chi and restorative yoga. Instead of mindlessly scrolling on my phone, I gazed out at the mountains or the palm tree outside my window.
I wasn’t sure any of these things individually were moving the needle, but together they were changing me. I worked on calming down my nervous system and accepting how I was feeling in the moment. Roger Housden says in Dropping the Struggle: Seven Ways to Love the Life You Have, “The only way through is to accept the gift of the moment, however it shows up.” Struggling was adding to my inability to rest. Fighting my experience was the opposite of feeling safe. Housden says surrendering to our struggles relinquishes the power it has over us.
Self-acceptance fostered a new way of thinking. I saw how I bought into our busy modern world, keeping distracted so I wouldn’t have to deal with difficult emotions that would wake me up in the middle of the night. I became aware of how much time I spent worrying and taking care of others to the detriment of my health. When I got sick, I finally took care of myself.
As I close the curtains, I submit to another day of being homebound. This time of my life is filled with sadness and grief, but also a profound sense of self-compassion. I am more loving, peaceful, and nurturing. I am a better listener to myself and others. This has helped me be more self-trusting and in return, I am less afraid. “Will this go away?” has been replaced with, “I am okay right now.”
I don’t know what tomorrow will bring, but I know that today I am present for the dizziness, the fatigue, the unpredictability. I give up the fight and welcome all of it.