SOS, Long Covid, The Reality
Not too long before Covid introduced itself to the world, I watched a movie. I remember how I lay, snuggled up with my husband, warm and safe, with a belly full of tacos. The movie characters, however, were not fairing so well. The movie centered around the real-life story of an adventurous couple, living out their dreams and scuba diving near an ocean reef. After seeing some incredible ocean life, the scene shifts.
The couple pops up out of the water, one at a time, glowing with joy after a brush with a rare manta ray. Their joy starts to wane quickly though. They realize the tour boat and guide are gone. Not a person or boat in sight, as far as they could see. Although they are frightened, they are not panic-stricken. They reasoned that surely, once the group arrived back at shore, they would realize that two passengers had been left behind, and would certainly send help to rescue them.
We watched the screen as the day turned to night. By this point, they were starving, cold, desperate for water. But still- they knew that salvation would come at daybreak. As the next day arrived, help did not. The couple was getting weak, and now sharks were beginning to butt into their legs with cold, menacing noses. By the skin of their teeth they made it through the never-ending, blindingly hot day, and the night that followed. All the while, sharks kept circling their ever colder bodies, as they gazed to the furthest edge of the sea- scanning the horizon for any sign of a ship, a boat, a helicopter – anything.
After the second night, as the day is breaking, we see the woman’s face close up. She looks up at her husband, and slowly says, “They aren’t coming for us. They don’t even know we are here.” I remember, watching that scene, and feeling that sense of doom fall, deep into the pit of their stomachs. The resigned terror was palpable.
The last 18 months have been my battle for survival. I have Long Covid. And I – like so many others- are living with the reality that no one is coming to save us. They don’t even know we are here. We are invisible. Too sick to be well, and too well to be dead. Just barely. We live in the margins. But we are here. Not long after I watched that movie, early in 2020, I got Covid. March 16, to be exact. I was relatively young, early 40’s, and rather healthy. I have four kids, and I had finally gotten back in shape after having the last baby. I was walking several miles a day, and doing Pilates as well as martial arts. I was mostly vegetarian, I eat organic, and was pretty clean, and I had no pre-existing conditions. Covid hit me like a nuclear bomb.
We have a son who has survived open-heart surgery who has Down Syndrome and another son who has Marfan Syndrome with major cardiac issues. So being super sanitized was familiar territory. We are pretty vigilant with any respiratory viruses because of the challenges of our family. Even though we were very careful and I was a stay-at-home mom- I got sick. The first symptom, in hindsight, was the taste of food. I remember that day clearly. I was going around shopping for cleaning products since most stores were cleaned out, and I stopped to grab a quick bite. I remember feeling very lightheaded and weak and I thought I needed to eat. Upon the first bite, I gagged. The food was just… wrong. Somewhere between dead mouse and cardboard. I sipped my drink, and it too was rancid. I threw them both out. That evening I collapsed. That day was the last day of the “before time” for me. By the next day I had a fever, chills, deep agonizing bone and muscle pain, felt sick, headache, and the weirdest thing – I felt so heavy. Like all of my limbs were full of wet sand. We sent the kids off to my mothers’ home, where they would remain for months, and our journey through covid began.
Those early days were a blur. I remember getting multiple chest x-rays. I remember that I had double pneumonia and the doctor pointing to a cloud of white on my x-ray saying it was ground glass type. I remember being violently ill, unable to speak or move, and always in pain. I was so week that for months my husband carried me to the bathroom. Walking would immediately have me on the floor wheezing. What I remember most, is the one thing I wish I could forget. When you can’t breathe, you become feral, panicked, desperate. I remember laying prone on the bed, my husband holding the nebulizer to my face as I watched my hands turn blue, and then purple on the ends. Can you imagine what it feels like to feel like you are choking, but nothing is there? Or to feel like you are drowning, but there is no water and no breath? The panic that hits, when you can’t breathe, it echoes this sound, “no one is coming to save you… they don’t even know you are here.”
I am one of the old ones with Long Covid. I got sick in the first wave. Before testing was available, and certainly before treatments were. I was told, not to go to the hospital unless I became unresponsive or absolutely couldn’t breathe. It was a terrifying time. Every night was a new nightmare. My blood pressure would drop, 60/40… 52/37… my heart rate would race up to 189 beats per minute, and the crash. The lowest heart rate I ever had was 33 beats a minute. I went to the edge of death many times. But- it appears that I still have a fragment of life raft holding me up. For now.
Yesterday I realized that it has been well over 500 days since I became ill. I spend my days in a darkened room. Light hurts. I sit in the quiet- because too much sensory input will trigger a crash for me. I have oxygen 24/7. I have been told that I now have stage 4COPD. I use a wheelchair now most of the time because vertigo combined with fatigue has led to too many falls. I have had two heart attacks. I may have to get a pacemaker. I see life going on, but here I remain. Like a living bug trapped in the slow slide of amber, I see what is happening. I just can’t escape it. Some days are better than others. Some days the lymph glands feel like they are full of molten lava. Some days I can’t remember anything. At all. I get scared because I know that my brain isn’t operating well. I used to be academic, now I am like Algernon, with barely even a memory of what I was, as the clouds of confusion continue to gather.
I’m trying to stay positive. Not for myself, honestly, but for the ones that I love. They need me to think I’m going to get well. So, I smile. And I hope. I’m not fatalistic. I hope like crazy for a cure. I scan the internet, the academic journals, and even some good home remedies. I’m desperate for a cure. I want to live my life again. I want to live again on the whole page…not just the margins.
Seeing and hearing people quibble about masks and mortality rates etc,… makes me so deeply sad. Because death is not the only tragic outcome. How many people, children, will have lives full of pain and limitations due to long covid? What will happen to those of us still sick as the future unfolds? What happens when we hit the inevitable wall of fatigue and are unable to work? Our country can not even agree to protect our vulnerable children. Do we think that long-haulers will fare any better in the future? Anyone can get Long Covid, including kids, and adults, regardless of the severity. Many of those with Long Covid did not have severe cases. But people forget about us when they tally the numbers and do the math of the macabre.
We don’t fit in the column for recovered, nor the column for dead.
We are somewhere in between, still swimming, sharks at our feet.
Waiting desperately for the rescue ship to appear on the horizon.