Four Years
January 18, 2025
Four years.
It took four years to graduate from high school, graduate from college, serve in the military. After four years of tears, hugs, pain, prayers, unknowns, wishing the next step would bring us to the finish line and waiting for Someday, it’s time to truly heal.
“Healing doesn't mean the damage never existed. It means the damage no longer controls our lives.” ~ Akshay Dubey
For so long, I’ve tried get to a place where I’m at peace with Long Covid. But I’ve realized that’s not realistic, that’s nirvana, true enlightenment, and I’m no Buddha. Life is messy so I guess it’s ok my feelings are messy. Most times there are two sides to my feelings: grateful I’m better than I was but sad about how much I’ve lost. On our Christmas trip to AZ, I laughed until my stomach hurt with my siblings, nieces, & nephews, then cried because I could only make it a third of a mile on a hike. I have some pure joy moments that don’t take for granted. It’s pure magic for a few minutes - like dancing to your favorite song, running with your feet flying across the ground, snowboarding by floating on powder, absorbing all the love in one hug, witnessing a student’s ah-ha moment.
People ask what my days are like. If you have kids, remember when they were in preschool and the second you dropped them off, the clock starts ticking on your time to get things done? That’s my life. From the time I get up, my energy and brain power clock starts ticking and I try to get as much done before time expires. Brian said a few weeks ago, “When people ask how you’re doing, I started telling them ‘you’re not sick with Long Covid but disabled by Long Covid.’” He’s right. I no longer fight to survive every day, but I am fighting to try to live every day.
In an effort to find a way to live with Long Covid, my current therapy is focused on putting out the fire and calming the static in my brain using neurofeedback. I describe my brain like a heart - it goes back and forth between flatlining, tachycardia, and AFib whenever it wants. And since a defibrillator for the brain doesn’t exist and I can’t shock my brain back to functioning, I had to find an alternative to deal with an excess of fast or slow brain wave activity. The goal of neurofeedback is to teach my brain to modulate dysregulated brain wave patterns on its own. I can’t explain how it actually works, but the following is an excerpt from a memoir of a concussion recovery that sums up my journey:
“They say heal. What they mean is retrain. And everything trains your brain after an accident. Walking down a street. Counting change. Dealing with your mother. Recalling the name of your cousins. Talking on the phone. Listening to directions. Going in circles. Being back out in the world is free therapy for vision, cognition, emotional regulation, stamina. The brain is plastic, in a way—is moldable. Every time you think, feel, attempt something new, neural pathways light up and make new connections. The axons— that is, neuro fibers that connect various parts of the brain—give the high fives so you keep going, champ! This is neuroplasticity, this learning of new skills and approaches, this doing things differently.” ~ Annie Liontas
Maybe accepting being disabled is as okay as I am going to get for the foreseeable future but that doesn’t mean I’ve given up Hope.
"Hope does not require that you make any prediction at all about what might happen. It simply asks that you believe that whatever happens, you will have the ability to make circumstances better and you can give some thought to what that action might be."
— Arthur C. Brooks
I am hoping the action of sharing my story educates about what Long COVID does and why you don’t want to get it, as well as to stop the stigma around getting Long COVID. I don’t share long COVID’s current affairs, I know it’s not something people want to see on their feed everyday. But, Long COVID is similar to HIV crisis in the 80s when it was stigmatized and ignored for too long and too many people were affected unnecessarily. If you are interested in the current research or what’s happening around the globe, follow me on BlueSky.
While I have been open about sharing my story, I battle with being seen using assistive devices or not being able to communicate. As I step, wobble, roll, and slur/stutter into year five, I am taking inspiration from Superman. Watching the documentary about Christopher Reeve’s life, I was in awe by the courage it took for him to not only rejoin the world in a wheelchair but make it his mission to help others. Rather than giving power to the shame I feel for not being able to fix myself, I am going to remember the chills I felt watching the audience at the Oscars when Reeves first appeared after his accident and feel you cheering me on in the same way - with love both in your hearts and leaking out of your eyes.
