Everything was going so well: his liver was showing improvement, he recovered from herpes, and even his vision slightly improved (I didn’t know you could get herpes inside the eye). He was in good spirits and was making plans for the future again; he also was eating again, everything was going well.
But the day before yesterday, he started having delusions. Yesterday they found him playing with his own excrement, rambling, confused… and then he returned to normal. Apparently, he has significant brain damage, likely caused by toxoplasmosis.
Having such a low CD4 count (his immune defenses) means all the illnesses that normally live dormant inside us start to surface. That’s how he got tuberculosis, and how he got herpes and now that toxoplasmosis. I visited him today—he looked fine and seems unaware of what he did during those episodes of confusion. I made him laugh; he was happy to see me. And to think that just a few days ago, I was complaining about being the only one who can support him financially because the rest around me are a economical disaster and that nearly all the fruits of my labor go to him—at least I still have enough to pay the bills and also my savings.
And this will go on for months. I cursed my luck, but after seeing him today, all I can think about is how sad it makes me to see him like this, and how afraid I am that he’ll suffer a fate worse than death: to live in a state of madness while my whole family takes care of him, bathes him, feeds him, and slowly forgets who he used to be—and begins to resent him.
For years I’ve told my wife Gina: 'If I ever get cancer or become incapacitated, the last thing I want is to be kept alive and become a burden to you. I love you all too much to make you suffer for me. So if I ever get really bad, please know that I’d rather die.' And I know they’ll tell me: 'Don’t say that.' Some will say, 'You’re family, we’ll do it out of love.' But I’m realistic and pragmatic. I know many—my whole family—will cry for me, maybe more than for any of my siblings. I’m the eldest, and in some way, I’ve always taken care of them. I know they’ll try to care for me and love me, but I also know love can runs out—or, at best, transforms into a sigh of resignation, and at worst, into suffering.
I don’t want to be a burden to those who love me. I’m not afraid of death (and I’ve developed my own theories about what happens to our consciousness when we’re gone); I fear dying in pain, living as a burden, and the death of those I love—but I’m not afraid of my own death.
I look at my brother and my heart breaks. He’s the last of my aunt’s family line (his mother—yes, he’s the son of my aunt and my father; that’s a story for another day). His mother passed away from COVID in 2021—I loved her dearly. I paid for all her funeral expenses and donated a burial space I had purchased for myself and my parents. He was her only son, and when she passed away, it was as if he were left all alone.
Despite living in the same house as his siblings and my parents, he lived in a separate apartment on the fifth floor. He isolated himself. I didn’t see him anymore—first because I no longer live with my parents, and second because he just didn’t want to be seen. I guess that’s where he got infected. He inherited money from his mother and wasted it on easy women. I’m sure that’s where he got infected.
He’s 34 now, but whenever I think of him, I picture his mother proudly holding her one-year-old baby in her arms. Oh, auntie, I remember your voice. I swear I’ll do everything I can to help your son!
In the end, we choose to carry the weight of those we love on our shoulders—at least, I do. And yet, I wouldn’t want anyone to carry me.
Wow, I didn’t think I’d cry. It’s not like he’s been given a death sentence or that his condition is completely irreversible—there’s always hope. I randomly listened inthe morning that Ozzy song "Dreamer" and can't remove it from my head the whole day
That’s all. Wish us luck. Thank you for listening.
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20 Sep 2025 05:13 CEST
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