Last year I began the blog series Coronavirus World where I compared the pandemic to a haunted amusement park. I had originally planned two more entries to complete the series addressing Christianity and ableism respectively. Having a chronic illness, I felt this sense of urgency and felt led to use my voice in hopes of creating change. For me, the Coronavirus was never a distant thought. It always carried a threat to my health and I never felt like I could let my guard down, even when cases were low.
Yet, I am still in shock that I got Covid-19.
No, I didn’t die, but my experience was not moderate by any stretch. This post won’t have the clever metaphors of the other posts (ok, maybe one!) because to be honest, I just don’t have the energy, mentally or physically. Deep breath—or as deep as I can without my heart beating irregularly from the exertion—and here we go.
Why the Silence?
Having a chronic illness during a pandemic comes with its own pressure and I have had to work through many emotions as I processed getting Covid. Shock, shame, heartache, betrayal, resentment, bitterness, gratitude, strength, and forgiveness.
When considering the consequences of sharing, I had to weigh the risks of people’s reactions. Those who felt the restrictions were too severe and we should just “let the virus take its course“ could resent me getting sick in the first place. Or my personal favorite, “Well if she has SMA and didn’t even die, then this whole thing is a joke and I don’t need to be careful anymore because the media is just blowing everything out of proportion.”
My Covid experience is so personal to me that I’ve been uneasy about people reading their own bias into my story. I didn’t want non-disabled people putting my Covid experience in a box to justify the assumption that I only got so sick because I had a pre-existing condition. Yes, I have SMA but my story should not be used to disqualify the threat of the virus for everyone.
However, I was not thinking about any of that when I got sick. In the beginning, I didn’t tell people because my only priority each day was breathing and eating. It felt like I was living on the edge of a cliff and was inches away from falling down at any moment.
It started with a headache. But this was no ordinary headache. I had been feeling fine all day, but by evening it was excruciating. I had never experienced anything like it before. I had a sharp metallic sensation and it felt like someone had a death grip on my brain deep from within. I knew in my gut something was seriously wrong. A test later confirmed what I already knew. I had the virus.
The next few weeks were very intense. By the time I got the results, I had a low-grade fever, nausea, and still had the barbed wire headache, except the barbed wire sensation had also spread to my sinuses, mouth, and throat. Eventually I would develop every single symptom on the list, with the exception of a rash. I even fell ill with an extra symptom.
By Day 3, I developed the most nauseating, horrendous, rotten smell inside my nose I had ever encountered. It was unbearable. I had to swish with mouth wash eight times a day to get even temporary relief. It caused episodes of dry heaving lasting for hours at a time and severe lack of appetite lasting a few months (the resulting weight loss is still a huge area of concern).
After 5 days, I started to noticed a heaviness deep in the lungs, especially on my left side. My doctor called every day for a week, very concerned and cautioned that he had seen people’s condition go rapidly down hill. The shortness of breath was sometimes so bad I could not talk more than a sentence without my heart rate going erratic. My body was under significant distress, but I knew I could not go to the hospital.
With all of the restrictions at the time, my mom would not have been able to come as my caregiver and going without a caregiver was not an option. The support I receive in hospitals is not enough considering SMA requires complex, 24/7 care. This is no disrespect to the wonderful doctors and nurses working on the front lines and I certainly don’t want to discourage people from seeking medical care. This is just the way we decided to handle it.
My mom and I did chest physiotherapy four times a day in addition to the hours I spent clearing my lungs. For over a week, my mom, dad, and I gave it our absolute all for me to make it through this. We worked our butts off using our combined skills as an SMA family.
However, I do not want to sound like we were in control. Yes, we worked really hard and without my mom and dad’s help, I would not have survived. But the reason I’m still alive is not because of our merit. My symptoms would literally change minute to minute and it felt it could easily take a turn for the worse in the blink of an eye. And for two nights, it did.
I was scared for my life. At that point I had lost the ability to talk and swallow and I had to be carefully monitored, especially at night. We were all exhausted. We knew if it went on like this much longer, I would have to go to the hospital.
Well, thank God the next day I turned a very subtle, very slight corner. I don’t know why God chose I would live. When my quarantine was over, I went for a lung x-ray and it showed no sign of damage or pneumonia. This should have been great news and it was. Maybe even a miracle. An answer to prayer.
But I also knew how the rest of my body was feeling and what I was up against in my recovery.
The Climb Back
I now have what is referred to as long-Covid and the recovery process has been anything but straightforward. For the first few weeks, I would alternate between good days and bad days. I couldn’t even tell I was getting better at all except that when I compared how I felt to the week before, I somehow was a little improved.
Even though on paper it says I’m recovered, I am disappointed to notice the symptoms keep coming back. It’s been a revolving door of symptoms coming and going at random. I never know how I’ll feel each morning when I wake up.
“Let's spin the Wheel of Misfortune and see what symptom you’ll have today!”
It’s been really hard, and that is on top of my already-compromised health with SMA. I have been sick countless different times in my life, countless different ways but I have never felt like this before and I never want to feel like this again.
I am writing this for my healing process and I hope by sharing, you can heal too. This has been a traumatic year for everyone, and everyone probably has a slightly different perspective. I cannot control what you think and convince you to take the virus seriously. All I can do is show up for myself and tell my story in an authentic way.
Stay safe and well,