On the outside, I look fine. Even in the worst of my health, I looked athletic, glowing even with a perpetual tan. Just like we can’t tell if someone has diabetes, we can’t tell if someone is dealing with chronic health issues like migraines too.
Migraines are the first cause of disability for people under 50s. No one would believe me if I tell them I have a disability. During attacks, I cannot move. Even an inch would bring the most piercing of pain. During the worst of times, my migraines would not relent. Even when the pain subsides, I would be left with the most debilitating body ache, fatigue and remnant pain all over my head. I have spent days, weeks, months doing nothing except closing my eyes and hoping that the pain would go away. My eye balls would feel like it was being stabbed with an ice-pick repeatedly. I would not wish a migraine on the worst of my enemies.
I have been dealing with this for 8 years now, with no sight of full recovery. I have become a radically different person because of my migraines. I plan my entire life around them. I have become a social recluse because I need to protect my energy reserves. I lost the ability to work in my previous profession – not that I liked it much anyway, but it was still traumatic to lose so much of my identity and what people see as my capability. I lost my zest for life, though I didn’t have much of it in the first place. I lost hope. I lost my self.
On hindsight, I can say that I’m a less unhappy person now because of all that I’ve learnt and done to cope. But the outcome does not ease the suffering endured. Most people do not know what it is like to be truly disabled. Do you know what it is like to curl up in bed for hours and hours like something is stabbing the insides of your head? Do you know what it is like to have so little energy that you can barely feed yourself, much less think of doing anything you wish to do? Do you know what it is like to see people living life while you miss out on all of it? I honestly thought I was better off dead. What is the point of living when every moment is filled with pain?
After years of crawling slowly back to a semblance of relative health with so many setbacks in between, I am finally able to live like a person. Not like a normal person, but at least like a person. Not just an empty, immobile shell. I can spend some time of the day on exercise, on going out – things that were unavailable to me before. I even completed a six-day bike mechanic class that would have been impossible before. I am not back to where I was prior to these 8 years and probably would never be again, but I am leaps and bounds better.
But I still can’t do things that normal people can do. My energy levels are uneven and dismal. I am easily exhausted, and exhaustion triggers pain. I spend so much time coping with this illness, that I hardly have any energy to do anything creative, except for writing. Too much screen time may trigger eye pain and migraine. I don’t have the mental stamina to perform long deep bouts of thinking, something I used to do every day as part of my work.
So no. I don’t wish to get a virus that would set me back years of difficult recovery and potentially leave me in a worse shape than ever. It makes it very challenging for me to understand why people would risk their health this way. I guess I sort of do, because I was once this callous with my health when I was younger and seemed invincible. Unfortunately we do not cherish our health until we have experienced what it is like to lose it.
If people knew: what I gave of my self to continue surviving, the volume of tears I have shed, the hopelessness that has plagued me incessantly, the time I have spent wishing for death, the daily restrictions and limitations I have to imprison myself with, what it is like to have a body that does not respond to pleas, to cease having ambitions because there is no point having them, to be unable to sleep because something is grating painfully inside my head, to exist but not live, to put up with all the remarks people have made over the years because they do not believe I am sick – maybe, just maybe, they would not think it is amusing that I refuse to take off that mask.
Maybe they would not take off their masks too, if they truly understood the risks of catching covid (again). Or maybe they like their odds, because life has never been against them. Or maybe there is an evolutionary mechanism that makes human beings blind to risks, isn’t that how we came so far? Nature is relentless, it does not care about the health of a single individual. It simply wants life to go on, regardless of the numbers sacrificed. Just like our governments, I guess.
I don’t mind being a laughing stock if this is what it takes to preserve my ability to think. It is brutal reading of scientists, academics, people who have to rely on their brains for their work – being unable to form coherent sentences and remember things that used to come so easily to them because of post-covid effects. Effects that may or may not be permanent. Would I want to play that roulette? Regardless of the disabling effects of my migraines I was still able to retain the capacity to think, even throughout all that pain. I can’t lose the only thing I seem to still have – my mind.
And yes, perhaps I would still get infected despite all my attempts, especially because the world has given up and it is becoming more unsafe as countries remove their mask mandates (or any mandate) one by one despite people still dying, hospitals still not coping, people still getting disabled – huge swaths of the population disappearing is better than the economy suffering I suppose, the math has been calculated.
But at the very least I know I had done everything in my capacity to avoid this seemingly inevitable fate, that I have tried to prolong my state of health for as long as I could, that it is the failure of our species to recognise what is truly valuable that has caused all of this unnecessary suffering – it would not be because I didn’t cherish my health.
My health is precious, because I know what it is like to lose it, and I am honestly not sure if I can endure losing more of it, especially since life with my health wasn’t very appealing to start with.
Duh, of course health is precious. Anyone’s health is precious, not just mine. But if that was the truth the world would not be in this very state now. We would not think that having a piece of covering on our faces is so antagonistic to our freedoms that we’re willing to lose our health over it.
Yes I know this will be unpopular. I know I will be unpopular. I know the world has “moved on” despite the virus not losing its virulence or its contagiousness nor its potential to wreak havoc on people’s lives. I know I am in an extreme minority still advocating for serious caution.
But this is my writing, my life. If I cannot even bring myself to write my truth, what is the whole point?
- Immunological dysfunction persists for 8 months following initial mild-to-moderate SARS-CoV-2 infection
- Fatality rate of people infected with Covid-19 twice higher than those infected once
- Association of COVID-19 with short- and long-term risk of cardiovascular disease and mortality: a prospective cohort in UK Biobank
- Risk of autoimmune diseases in patients with COVID-19: A retrospective cohort study
- Interactomics: dozens of viruses, co-evolving with humans, including the influenza A virus, may actively distort human ageing