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  • Writer's pictureSaddie

The Simulation Just Went Bad.

It's been 65 days of quarantine & a little over a month since I posted last. You would think there couldn't possibly be anything going on while being cooped up in the house for 65 days but my life is not like that. There's so much going on, I'm still wrapping my head around it & how I move forward.

There's so much to say, I'm not sure where to start so we'll start mid April. Around April 15th, my mom called me saying she had become exposed to Covid-19 at work. Her patient & his wife were both positive. When I first heard this, I felt my heart stop. I had been watching the numbers of hospitalizations & deaths grow every day. I had seen every other friend post a tribute of a lost family member, friend, coworker. I had seen my dad, with tears in his eyes, come to me three days in a row to tell me he lost a friend, eventually, his nephew. I saw these numbers & heard the stories & here it was, this invisible monster, going after my mom. As a home health aide, I knew there was a possibility of her catching it but nothing prepares you for when it actually happens, especially something as unpredictable as this disease. Almost immediately after getting off the phone with her, I tried to schedule an appointment to get tested. Being that we live in the town with most Covid-19 cases on Long Island, we had to wait a couple of days.

My mom has become super religious these past couple of years & she just kept saying she had faith in God & his plans through all of this. When we finally got her test results, confirming she was positive, the worst of the symptoms began & every day they were getting worse. I had never felt truly helpless until this. I couldn't see her or help her & she refused to have any of us get near her apartment to bring her anything. Every day I would call her to see how she was doing & would end up crying because the symptoms weren't getting better. At one point she began trying to hide how bad she really was because she knew how sick I was getting. I remember my aunt, thinking she was helping, said "I know you don't want to hear this but she's not getting better." In the back of my mind I knew she wasn't but I needed a little shred of hope fo cling on to.

Even though I couldn't help my mom, there were so many people who stepped up. From family friends to strangers. The immigrant community really helped my mom through this. It made me happy & also broke my fucking heart at the same time. These people would bring my mom home remedies, things that helped them through this sickness, because they didn't have access to proper medical care. They were too afraid to go to the hospital because of their immigrant status. It made me so sad that even in the midst of a pandemic, people would rather die than be deported. It is not their fault, it is this corrupted country & the awful government I blame for everything. One day I wish to live in a world where everyone can have access to medical care & sense of stability, regardless of their status. But this part is not about the government, it's about the selflessness the immigrant, both documented & undocumented, helped my mom at a time when I couldn't. Her boyfriend, who I've never quite got along with but had a soft spot for, would get her food & medicine, risking himself just by living with her & helping her out. Some of his friends, who had heard she was sick, brought her eucalyptus branches to shower with because it had helped him through it. Another brought over some medicine from El Salvador he had used that helped him when he had it. My aunt's friends making soups for her & my aunt bringing them to her. Everyone working together to help each other. Seeing everyone come together to help one another was beautiful & the immense gratitude I have in my heart for each & every single person who helped my mom when I couldn't is something I will carry with me forever.

Towards the end of April I started having trouble sleeping. I was going 30 hours without sleeping or sleeping only two hours a night. During this time I also noticed my feet were numb. Like I could feel them & walk but I had that electric, zinging feeling going on. I thought it was the stress of everything going on so I just kept on going about my days. I had tried to work it out, massage it out, literally anything, but nothing was working. The numbness started becoming pain that reached all the way to the top of my stomach. Essentially, the whole lower part of my body had become numb & when it wasn't numb, it was a burning, painful sensation. Even wearing clothes hurt. I remember one day doing my zumba routine & the next day I woke up, unable to walk. It was so scary. When I was able to walk, I was so weak & I ended up falling, spraining my knee. I was double fucked. I ended up spending two weeks in bed because I couldn't do anything else because the pain was so severe.

By week 3, I was desperate for a solution. I was living on Tylenol & Icy Hot but that eventually stopped working. I went to the doctor's where he prescribed me some medicine that didn't work. I'd done my bloodwork & on the day I was supposed to get my echocardiogram, I ended up going to the ER. They were taking my vitals when they rushed me to the back because my heart was beating so fast. I was having an anxiety attack while being submitted. I was hysterical because I didn't know what was going on. It's comical looking back now. They did all the tests & I spent the next 5 hours awaiting my test results, paranoid as fuck as to what it could be & also aware that I was in the hospital in the middle of a pandemic. Thankfully they had the covid patients separated, on the other side of the hospital. Finally the results came back saying I had peripheral neuropathy which means my peripheral nerves were malfunctioning. This was a Lupus flare up. I remember stepping outside of the hospital, wobbling to the farthest bench to wait to be picked up & feeling relieved because I finally had an answer. I sat there for 20 minutes, enjoying the fresh air. It was the first time in awhile where I felt some sort of calmness. Imagine that? Calmness in the parking lot of Southside Hospital?

I was diagnosed with Lupus almost 4 years ago. It is very tricky to diagnose & I had been tested a couple of times to make sure. It had never affected me severely until this time. I would get occasionally sick from being exposed to the sun for too long & arthritis, amongst other things. But a flare up like this? Never. I guess I was lucky in that aspect of my life. It has never been something I spoke about too often because if I'm being honest, people are quick to not believe when I am sick for some reason. I've never faked being sick but people just don't think fat people get sick. They think everything is because they're fat. You broke your leg? It's because you're fat. You got a cold? It's because you're fat. You got a concussion? It's because you're fat. Don't believe me? Even after all my tests come back saying I'm not diabetic, not even prediabetic, everyone is in disbelief, even the doctors. Like they're expecting me to have it & surprised when I don't. Even as I was telling my family that all my tests came back pointing to peripheral neuropathy associated with my Lupus, they still said "we really need to work on your weight" as if I haven't been working on it!!! There have been comments made recently by some family members that have honestly hurt my feelings & were not needed, especially during this time. They think I spend my whole day eating everything in sight when I've barely had the strength to eat anything at all, instead eating only a meal a day. They say I've spent too much time in bed when okay yes, because I was in fucking pain! I couldn't get up without crying!!! The saddest part is that I was too afraid to say anything to anyone when it first started because I knew I would be judged & I was right.

When you're fat, it's like your body becomes fair game. People feel like they can say whatever they want. We all know how brutal my mom was to me, growing up but I can't tell you how many times I've had someone come up to me to talk about what new diet they're currently on or what they think *I* should be doing. I can't tell you how many times people have tried holding "interventions" when it was just them reminding me of everything I hate about myself. I get asked every day when I'm getting my weight loss surgery & how beautiful I'm going to look once I get it as if I'm not beautiful now, as if the surgery is going to magically fix everything that is wrong with me.

I remember going to the mall with a group of friends who were all smaller than me & this lady selling Herbalife came up to me saying I should try it out so I could look as pretty as my friends. Or how about that one time when I went with my cousin & aunt to visit a distant family member who took care of me for 2 years straight when I was little. She went to hug my cousin thinking she was me & when she was told it was me, she said "you're pretty but she's prettier" & proceeded to comment on how huge I was? Let's not even get started on how abusive guys were to me growing up & still are. It's a never ending cycle of torment that never stops & why? Because I weigh more than the average person. I get told "well if you don't like being treated that way then maybe you should lose the weight!" Why do I have to lose weight for people to treat me like a human fucking being?

It's safe to say I've been going through a lot, especially mentally. I feel like I've been going through this alone because no one understands what I'm going through. I've felt like I couldn't talk to anyone about this so I have kept to myself. The one person I have been able to depend on has been my little brother. He has watched me struggle every day & seen me cry out of frustration. He has helped me up when I have fallen, literally & massaged my feet when the pain got so bad. He truly stepped up when I needed him the most. My mom has been helping me through this as well, as best as she can from a distance, calling me every day to see how I'm doing & being, surprisingly, optimistic. She has been getting better & stronger every day, thank God. Today she went to get tested again so hopefully she can go back to work because she is going stir crazy.

As for me, I have been going crazy as well, distracting myself with Animal Crossing & Tiktok for hours. Watching Breaking Bad (almost done) & Rebelde (Mia & Miguel 🥺).

I am ready to go back to work but I'm a little scared I won't be ready to go back yet because of all of this going on. I have been trying hard, since my hospital visit, on getting my strength back. I'm learning to walk through the pain. Everything still hurts & is super sensitive but not as bad as before. Today was the first time in almost 3 weeks that I've seen my curls. It's gross to say I hadn't been able to wash my hair for 2 weeks. I couldn't stand in the shower for more than 5 minutes without being in so much pain from the sensitivity of the water pressure. Today was the first day I looked at myself in the mirror & started to feel like myself, like things were finally getting better. Today I actually felt like texting people back instead of drowning in my sadness. My friends have been very patient with me & have checked up on me occasionally, even when I didn't have much to offer up, in terms of conversation. They are also the reason I have been able to get through this whole ordeal, even going as far as "keeping me company" as I sat alone in the hospital because no one was allowed in with me. I say this all the time but I was seriously blessed with having amazing people around me. I'm not sure what I did to deserve them.

I'm not sure what will happen in the next couple of weeks because I don't even know what is going to happen tomorrow. Today is the first day that I've felt optimistic in a long time. All I know is that I can't wait to go back to work. I can't wait to see my friends. I CAN'T WAIT TO GET MY NAILS DONE! I can't wait to go to karaoke night (I have a whole list of songs I NEED to do!) I can't wait to go on our special outings with my best friend. I can't wait to feel better & get my life back on track. I feel like I'm taking baby steps but at least these baby steps are moving forward.

As always, if you made it this far, THANK YOU! It always amazes me to see how many people take the time to read anything I post & have the sweetest things to say so thank you for creating space to be the raw, unfiltered version of myself.

Until the next post 💛


P.S: The title of this post are the opening lyrics to my favorite song of the moment, Bloody Valentine - Machine Gun Kelly. Please check it out 💖

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