Thread by @predi_cam_ents

Since September my best friend Chloé is bedridden with long Covid & ME/CFS.

Today marks almost a month of her biggest relapse to date. She went from being bedridden but awake, present, able to move around to eat, drink and shower, able to lie down on the balcony outside 🧵 1/n

able to speak to me for hours, to think about philosophy (that’s her job!) to having to lie on her back, in the dark and almost complete silence.

I pass her bed and force myself to not interact because it is too much for her. 2/n

I keep the million questions and observations I have to myself. She doesn’t know what I do during most my days. Every one of my seconds used to be accounted for. 3/n

Today, I let myself feel, for the first time since the relapse. I think of myself, of what this all means for me. And I find myself grieving the loss of my friend, my partner, my soulmate.

She’s still here, and as I write these words I see the even and reassuring 4/n

movement of her covers as she breathes. She’s still here - but she cannot speak to me, she cannot be with me. As much as she wants to. And oh, how she does.

I know because I know her almost as well as I know myself. 5/n

I miss her, and she is right in front of me.

We live together, but lately it feels like she has been ripped away from me. Now we simply exist side by side. Because merely existing is almost too much effort for her. 6/n

She lies in the room below me, in the dark, mostly in silence. She waits for hours to pass, with the tenuous hope that she might feel better.

I care for her, and sometimes she says I spoil her.

I have adjusted my life as much as I could - my house, my work, my social life. 7/n

I have given this illness hours, days, so much energy, and sometimes a little bit of my own health. I would give so much more. And yet, it will never be enough.

Oh, how I wish it could be enough.

How I wish I could lay years of my life for her to get some of hers back. 8/n

She wonders if her life is worth living in a world that allowed for her to fall that ill and then abandoned her.

I wonder if my life is worth living w/o her - w/o her laugh at my (sometimes dubious) jokes; without her words and brain to articulate things I mostly intuit; 9/n

without telling her every single thought that goes through my mind.

Some nights I cry in my bed, thinking of what we’ve both (temporarily, I hope…) lost.

Most days, I fight for her - I fight a medical system that ignores and gaslights her; 10/n

I fight those who minimise her or would do her harm; I fight the well-meaning idiots who will not learn about her pathology, those who know nothing and yet have all the answers. I’m told fighting is exhausting. 11/n

But fighting has always kept me alive - and these days, I feel most useful when I fight. At last, I feel like I am doing something.

Something that could make a difference. Something that should make a difference. But nothing does. 12/n

So we weep in our respective beds, bc her illness makes it so we cannot even hold each other anymore. She doesn’t tolerate it. Sometimes, I sit at her feet, on her bed. I work on my laptop and she slips her feet under my legs so “[she] feels that [I’m] there”. 13/n

And I am. Or I try to be. But she and I, we can’t do it alone.

So we weep, and we quietly (and sometimes loudly!) hate a system that has abandoned us. Abandoned us in our little home, with our little means of surviving, and fighting. 14/n

So we weep and we wish for better days, and every day in which she does not improve we can feel the tiny bits of hopes slipping further away from us. 15/n

And, as I ponder whether or not I should share how I feel with the rest of the world, I once again feel her “absence” - not knowing what she thinks of something meaningful that I wrote unnerves me. She would find some words better than I did. 16/n

Sometimes she expresses my own feelings better than I ever could. Not having her running commentary on my thoughts and feelings feels lonely. Not seeing her when I turn around feels lonely. I love you
@chloe518lc
- I'm with you. 🌺📷 THE END