Why me?

Photo by Patrick Perkins on Unsplash

TW: mentions of death, suicide, despair, chronic illness, and severe disability.

[Spoiler alert, this post is going to be one long rant (with some tongue-in-cheek whining) so if that’s not your vibe today, please feel free to read any of my other posts. If you are staying, welcome, and strap in.]

Hello God/Mother Nature/Higher Spirits/the CDC & ghost of Anthony Fauci future,

Can you hear me? It’s me, M. Quick question for you:

Why me?

What did I do to deserve this?

Why must I suffer seemingly with no end in sight?

Are you testing me?

Is this my karma?

Why didn’t you tell me how bad this was going to be?

Why is this my life now?

Why me?

I always recycle. I throw my trash in the bin. I give money to charity. I rescued a cat from the street. I volunteer. I’ve mentored youths in my community and junior employees. I tip service staff. I hold the door open for others. I say thank you. I look both ways before I cross the street. WHAT MORE DO YOU WANT FROM ME?

No, seriously, I just want to know…why me?

Why did you condemn me to the hell that is living with Long Covid?

How are millions of other people in this country just brunching, playing sports, traveling, enjoying air full of viruses while maskless, and generally living their lives without much concern, while I’m just trying to make it through a day unscathed?

I have to spend every waking hour navigating spaces like an aerobiology ninja. I have to mask in every space I’m in because Long Covid has ruined my immune system to the point that me getting sick will put me in bed for a month, mostly in the dark. No one else around me seems to care. They’d rather live their lives unbothered. And they’re doing it, seemingly without consequences or a care in the world.

Meanwhile, some days I can’t even make it out of bed because my mitochondria have decided that they’ve had enough and are now on strike. Tasks that used to be easy for me are now difficult if not impossible. I can slowly sense that my brain is withering away, which is truly terrifying. It feels like I have I have Dementia in my 30s. I’m not trying to will this into existence, but with stroke rates rising rapidly in my demographic, I’m waiting, terrified…praying my Covid-induced microclots don’t decide to unionize and take me out with their collective action.

Living with Long Covid, ME/CFS, POTS, IBS, ADHD, depression, anxiety, and C(PTSD) feels like a death sentence sometimes.

I don’t necessarily think I’m dying (though who knows for sure at this point after repeat infections / and aren’t we all basically dying every minute of every day?), but I do know every single part of my life is being robbed from me slowly. I am gradually losing absolutely everything I held dear.

My friends, family, career, passions, hobbies, dreams, activities, health. I am not lying when I say everything.

It just doesn’t feel fair. Why am I meant to suffer like this, with no cure in sight, when everyone else seemingly gets to move on, live maskless, get reinfected, and still not get Long Covid like I did? It pisses me off. I think it would piss you off too.

[NB: Obviously no one deserves to be stricken with Long Covid (or any disability for that matter), I do not wish disability on anyone despite my anger, disability has nothing to do with karma or a person being more “moral” or “better” than others, disabled lives are not worth less, and yes, I recognize that there were/are massive public health failings when it came/comes to Covid.]

This is not the oppression olympics, and I will never pretend my suffering is on the scale of millions of other people on this planet (literally I would not last a day in Gaza like my friend Eman and her family who have been trying to survive over 600 days of genocide), but I am so tired and alone and diminished. My suffering is invisible; no one cares, because no one can see it.

I am living in my own form of misery. Privileged, indeed, but a form of misery, despair, desperation, hopelessness, and resignation. Physical and mental capabilities decimated. Dreams not just delayed, but fully eviscerated. Friendships lost. Community dissolved. My world has collapsed in on itself. All my little joys, stolen.

I stopped following organized religion a long time ago, but there is a Bible verse in Corinthians that is (purportedly) behind the origins of a common phrase I think about a lot. Basically it is now an often-repeated adage about strength in the face of adversity. You probably know it; “god gives his toughest battles to his strongest soldiers.” God won’t give you more than you can handle, because you were created in god’s name (if that’s what you believe in).

Having Long Covid often feels like being god’s strongest soldier because truly we are fighting one of the toughest battles there is.

I think if most fully able-bodied people had to live a day in the life of a person with severe Long Covid and/or ME/CFS, they’d give anything to have it go away. Yes, anything. It takes a ridiculous amount of mental fortitude to not want to end one’s life when you’re living with a cure-less chronic illness, let alone many at at once. [NB: I really wish they could invent a ME/CFS simulator for able-bodied people just like they have the period simulator for men.]

If you - higher being - gave me all these incredibly tough battles (including but certainly not limited to Long Covid), I must be one hell of a soldier, huh?

But guess what…I never enlisted! When did I sign my name on the dotted line? Show me the receipts! Can I please have a voluntary discharge? This was a HUGE mistake.

There’s a meme about this platitude that always makes me chuckle. It says “god gives his toughest battles to his strongest soldiers…I am not one of them, please make it stop.” Like I said, I don’t want to be a solider. I didn’t sign up for this. PLEASE LET ME LEAVE!

ID: meme with a opossum framed by colorful wordart text that reads “god gives his toughest battles to his strongest soldiers…i am not one of them, please make it stop”

Obviously, I have learned so many lessons from developing Long Covid and living with disabilities and chronic illness. I am far more patient, kind, understanding, non-judgemental, accepting, empathetic, and compassionate. I am less self-centered and more community oriented. I have started to unlearn my ableism. I have jumped (figuratively speaking, because I’m literally too tired to jump) leaps and bounds when it comes understanding and putting into practice disability justice.

But this was not how I would have liked to learn these lessons. Was it the only way for me to do so? Maybe. I’ll never know.

I go back and forth on the idea that everything in life was meant to happen, that there’s a reason everything happens, and that there’s lessons to take from every experience. I guess it’s a way for me (and others) to try and make meaning out of our suffering, because if it doesn’t mean something, then what was it all for? Suffering just because? That sounds pretty shit.

I really struggle with these ideas.

A few months ago, I read the excellent book, The Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke. There were a few passages from the book in particular that really stuck with me (my emphases in bold);

Ethical loneliness is what happens when wrongs are compounded by going cruelly unacknowledged. The term speaks to the special pain of being part of a silenced group, and the pain you feel when the possibility of communication disappears simply because of your identity.

and,

There is a loneliness to illness, a child’s desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if not one has any grasp of what it is you suffer from and the symptoms wax and wane? How do you describe a disease that’s not always there?”

and,

There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. Until we mourn what is lost in illness—and until we have a medical community that takes seriously the suffering of patients—we should not celebrate what is gained in it.

and,

Perhaps ill people do, in a sense, become wise through encountering doom, and as a result they become new versions of themselves, having made it through some of the hazards of the course, experiencing what the poet John Ashbery calls ‘the charity of the hard moments.’ Those encounters perhaps allow us to see ourselves—and our mortal condition—more clearly. But it would be false not to observe that this knowledge is born of loss, of resignation to a condition that forces us to give up on aspects of ourselves we had hoped we might develop. Wisdom, in this understanding, is knowledge coupled with the wound that comes from encountering doom.

I recognize I’m certainly not in a place to celebrate what I’ve gained through chronic illness. Even if/once I’m recovered, I still may not be. I’ve had to lose so much, and what I’ve gained doesn’t feel like an adequate tradeoff.

Sometimes I wonder if I was really so badly in need of all these lessons? Was I really that uninformed? Did I really lack that much empathy? Aren’t there so many people that could use such lessons more than me (looking at you, current and previous White House administrations).

Am I meant to do something great with these learnings? Because if so, dearest god/mother nature/[insert your preferred higher being from my long list above here], it seems like you have completely forgotten to give me enough mitochondrial energy and cognition and willpower to be able to do so. What an oversight. Can I please speak to a manager?

So, I come back to the question I asked at the outset. Why me?

I guess that’s the whole point of our existence. We create our own meaning. We get to decide why and what an experience means for us, and about us. But for right now, I’m still lost.

I still ask, why me? I wonder if I’ll ever find the answer.

Note: All my essays are stream of consciousness, mostly because I’m too tired and brainfogged with my LC and ME/CFS, but also because it’s a nice experiment to be (mostly) unfiltered. Thanks in advance for excusing any typos, spelling mistakes, etc.