Updated: Sep 10, 2019
This is definitely a dark piece, written in a bleak mood. But curiously, after writing it, my spirits lifted so effortlessly. Ordinarily, I would just delete a post like this the day after writing it, but I'm leaving it in the hopes that others will witness just how cathartic creativity can be, regardless of the form. We simply feel better when we share...even if no one reads it!
I can’t breathe like I used to. There are days when the air just doesn’t get in. When I would take my mom to her pulmunologist, I would tell the doctor that I had breathing problems too, so he had me tested and sure enough, like her, I had emphysema. I asked him if it was from my smoking days, and he said the scarring looked more like it had been from an infection.
Breathing issues were yet another thing my mom and I had in common before she died last year, although hers were far worse. And like me, her disease wasn’t from her own smoking as a young woman, but rather from being subjected to second-hand smoke at her job. For twenty years, she worked in the medical library of a psychiatric hospital, and all the patients would come down multiple times a day for a smoke break, filling the room with a robustly thick fog that we would joke about when we’d visit her.
I miss her so much, especially on these days when my body feels so broken. She was such a comfort, always, and caring for her could make me forget myself and my own suffering, which is largely chronic pain in my face (due to complications of a years-ago jawbone infection).. But things change. I’m on Pegasys now, a weekly injection of interferon, and it makes me profoundly ill. But if I don’t take it, my platelets run into the millions (a condition called thrombocytosis), and I’m subjected each day to migraines and angina--even episodes of congestive heart failure. While I’m entering my older years now, I feel like I’m too young for this. When I was in my thirties, even twenties, I was sick then, too, not knowing that my liver was slowly clotting from this disease, yet I was young enough to keep going, to keep pushing through. No one knew what I endured every day, and doctor visits yielded vague explanations like chronic fatigue syndrome or fibromyalgia.
But I don’t have youth on my side anymore. There are days where I have great plans, but the fatigue is just too much to bear, and I crumble into a deep sleep, writing notes of apology later for my absence.
Today I watched again Bohemian Rhapsody, feeling a wealth of emotions. On the one hand, I’m jealous of all these young actors in their prime, having a great time making such a wonderful movie, yet on the other, I feel a strange connection with Freddie Mercury, who succumbed to AIDS at just 45. While I’m not gay, like Freddie I never had children, and so there’s the hole of what might have been. I know why. My father, now on his deathbed, left a strange curse upon me where I could just never trust men. He so successfully wove his way into my brain that I was strangled and constricted by his cruelty even when I'd moved far away. And so I pretended to be normal, to be happy, but I was sick in every way a person can be sick. And despite herculean efforts, it seems I’ve never been able to overcome any of it.
And so today I can’t breathe. I suck in the air, but it only goes so far, and it can be terrifying. I think of my mom in the hospital on the really rough days when she couldn’t get the air in. Her eyes would dart around the room with this expression of terror, thinking that maybe if she just looked hard enough and in just the right spot, she would see the air and grab it. She looked through everyone and everything in those moments, feeling nothing but the desperation to breathe.
Time is running short, and I know it. There are days when I feel such happiness at all the goals and dreams I’ve yet to fulfill, but in moments like right now, I fear there won’t be time for it. And it makes me sad. Freddie Mercury may not have had much time, but he was healthy during the time he was alive and accomplished so much. My friend Golriz, who’s French, says I suffer from the American disease of “accomplishment,” that I should just be happy to be whoever I am and expect to be loved. I know she’s right, but I am who I am. I’m driven by accomplishment in the absence of love, a concept that has always eluded me. I know I had it with my mom, but she’s gone now. And I’m left with goals and dreams that I can’t make happen. Tomorrow I may feel differently, but today, right now, I feel so deeply broken.
#chronic #pain #thrombocytosis #thrombocythemia #grief #loss #illness #emphysema
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