Life update: I want to be unbreakable
This was originally a Facebook post that I posted on October 18, 2024. I wanted to post this here as well on the off chance that someone is keeping up with this blog. My friend Astrid checked this over for me because I'm only using dictation, and it creates a lot of punctuation and grammatical errors. Anyway, here's the link to the Facebook post:
Hi. I know I've been quiet for more than a year now, but I wanted to come back to say thank you and to maybe update you all about how I've b
Hi. I know I've been quiet for more than a year now, but I wanted to come back to say thank you and to maybe update you all about how I've been doing post meningitis. I wish I could tell you all the full story right now. But I am still blind, and right now, I am relying on the dictation function of the keyboard and Braille. I promise I will definitely tell this story as soon as I can, and I promise it will be a full five-page essay 😀
In case some of you didn't know, I contracted cryptococcal meningitis last year, which caused me to lose my eyesight, hearing, and sense of smell, and I had to learn to walk again. That's just the tip of the iceberg because I was in the ICU for almost a month and then had to stay in the hospital for another month. And a lot of things happened in between.
I got to rest at home for around two months before I relapsed in December, and the meningitis came back with a vengeance - so much so that I ended up having to get a VP shunt surgery. Now I have a tube that goes from a ventricle in my brain to drain excess cerebral spinal fluid into the peritoneum in my abdomen. I have a valve and everything. I tell my friends I am a robot now. 🤖
That's a total of 59 lumbar punctures, and I was awake for 42 of them. I had 21 while I was in the ICU and 38 almost every single day during my relapse. I am not a fan of it ☹️
I was released from the hospital on February 1, 2024, and since then, I've just been doing my best to look for ways to entertain myself while I am unable to work, unable to truly write, and unable to live my life the way I want to. But it hasn't been all bad. I decided to get an audible subscription so I could listen to audiobooks, and now my most active social media is Goodreads. I figured out a way to use the built-in iPhone screen reader to the fullest, though many apps are not compatible with it, especially META apps. Honestly, the app with the best accessibility is Twitter/X.
I've kept in contact with most of my friends and family. I've made it a point to do so because having a near death experience really makes you realize some things. Life is much too precarious to spend it not building or rebuilding bridges with people you've created distances with, whether intentionally or unintentionally. Besides, what is the point of all these advances in technology if we don't use them to maintain our communities?
I have mostly been spending time on a private Instagram account with a few of my friends as followers. I post a lot of Instagram stories just talking about literally anything that comes to mind. I'm also learning how to navigate the app even with a screen reader, and I've managed to do a lot of things that I used to do before I went blind, which I think makes me super awesome 😀 But seriously, I've been learning to post videos and photos on the account, and my friends are gracious enough to humor me with likes.
I’ve even learned to edit videos. Well, “edit” is an overstatement, but I did manage to stitch two clips together using CapCut, which was a struggle because CapCut is not good with a screen reader. I’ve even learned to put text on photos, and I've made just one meme so far of my nephew Anri. Videos of him and my other nephew, Oliver, are what make up the bulk of this Instagram account.
One day, when I am able to see again, I will review these videos in full color, hopefully. Right now, only my right eye can “see” shadows and light, but it is improving. Even though I can only see in black-and-white, I’m now able to recognize my nephews’ features on the camera during video calls.
I've also learned to brush my own teeth, take my own medicine, fold my own blanket, and sometimes plug in my own phone charger with some safety precautions. I can even take a bath by myself under the watchful eye of my mother, just in case I slip and fall. I can eat on my own now, though I do have to use my hands. My parents would do anything for me, of course, but I wanted to unburden them from these little tasks I have to do to be a functional human being. So I learned and learned and learned and learned.
I was prompted to finally write this post because this week, I was able to write 3000 words of a short story. It's a very bad first draft with a lot of punctuation and grammatical errors, but it's 3000 WORDS almost fully using dictation. I had to use the built-in iPhone Braille keyboard whenever I erased words. A few months ago, I taught myself to learn Braille using the iPhone braille keyboard. It's actually an excellent piece of technology and it works best with Apple apps. But you do need some form of hearing to use it because the phone reads out the letter you’re typing. I'm not as fast as other braille users but I think I'm getting there.
Writing a short story felt like such an achievement that I want to tell literally everyone about it 😀 And I will be riding this wave for a long time. Life is a little different when you have to live in literal darkness and just watch your life and the world go by without you. I don't want to be just a spectator in this world, I want to be a participant, but I know that in order to do that, I have to rest well, take care of my body, take care of my relationships, and just wait for the right time.
I've had to struggle a lot with the fact that everyone my age, all my friends, are moving forward with their lives, while I've been set back. I still struggle with it sometimes, having to watch them and feel envy. But mostly, I feel very, very proud of all of them. I don't even have the time to feel envious anymore whenever I remember all the things they've overcome to get to where they are. I try my best not to feel pressured and accept that this is just the hand I've been dealt with in life and I just have to keep playing.
I have to watch my nephews grow up without me, hopefully just for now, and I miss them and my siblings terribly. So I am doing my best to be good to myself so I can see them again much sooner than expected.
I am staying sane with books, music, video calls with friends and family, voice messages, Instagram reels, and YouTube shorts, even though I have to sometimes ask my friends to explain them to me. I also spend quite a lot of time singing at home, bothering the birds and the ants and the neighbors with it. I’ve also learned to rap the Chance the Rapper parts in the song Sunday Candy. (Please support my new career as Claire the Rapper.)
Mostly, I spend a lot of time doing my best to be grateful. I’m grateful for my family, who kept the faith that I would always come home to them even during those days when some doctors thought I wouldn't make it and that even if I did, my mind would regress into that of a child. But I didn't. I suppose my most consistent hobby is defying my odds 😀
I'm also so very grateful for everyone who helped out. My relatives here and abroad, my friends and comrades, organizations I am a member of, those I've interacted with, my blood donors, all the artist and writers who shared their talents to help in the fundraising, All my classmates from high school and college; all the doctors and nurses who took care of me in the hospitals; all the priests, nuns, and religious groups who prayed for me; and everyone who has prayed for me or donated or gave even just a single passing thought about my well-being. There is no way to measure my gratitude for all of you, and as soon as I get better, I will do my best to thank each of you for everything you've done for me and my family.
There was a time when I was under a comatose-like state in the ICU where my brain gave me a different reality: I was lying down on a circular bed with white bedsheets that was going around in an elliptical. From above, there was a cliff on the left side and the entrance to a hotel lobby on the right side, and I would pass by these two with every rotation . This was around the time I had become unresponsive in the hospital. I was under a lot of stress, worrying about the fact that this was a problem I couldn't solve. At some point, I heard my sister's voice, and she appeared looking unearthly, beautiful. Looking back, I now realize that that wasn't really my sister because she doesn't remember saying, "Hi Kay. Ganina ra ko nangita nimo." I think that I was at some kind of pre-afterlife point and that entity was perhaps an angel trying to comfort me. I'm usually a skeptic, but after my mind created an entirely different reality for me while I was in the ICU to shield me from most of the pain, I think I am a believer of the wonders of the human brain now. Well, I suppose I always was, being a psychology major and all. But this felt a little more supernatural.
I know now that I was given a choice between life and death, and I chose life and survived death. Things are hard financially right now because of all the hospital bills and my continued treatment for lupus and CKD, but you know what? I'm alive right now. I beat meningitis, despite my odds, and despite the difficulty in treatment because of the lupus.
When I get better, I don't want to be just the unsinkable ship that floats listlessly in the ocean. I want to be the sails that steer the ship toward the sunrise, even against huge waves and storms. I won't just be unsinkable. I want to be unbreakable.
I'm going to need that unbreakable spirit for all that I want to do in life. Be the best Auntie Kakay to my nephews, for one. Continue my work in the struggle for genuine liberation. Fight, always fight. Learn first aid, sign language, and how to throw a punch. I might even go on and learn how to sing, just to annoy everyone. I might publish a book or four or zero. Maybe go back to writing poetry. Perhaps I could finish my masters in clinical psychology or maybe not. Bake a lot more pastries, and finally conquer baking bread and macarons and baked goods I find difficult because I have an irrational fear of yeast and egg whites. Learn to cook every single dish I want, especially now that food is not so restricted. But mostly, I'm going to build and rebuild a life for myself, against all odds.
Meningitis ra ka, si Claire Obejas ko. 😭 ✊🏼
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This photo is from my 26th birthday last August. A big improvement because I spent my birthday in the ICU last year. Yes, I miss my long hair 😔
Also, if any of you want recommendations for audio, dramas, romance, science fiction, historical fiction, nonfiction, some speculative fiction, and fantasy, I am your girl. (Wait, maybe not. That's way too much pressure 😔 but if you want to know anyway and won't get mad at me if it's bad, I can be contacted through voice messages, but also I am mostly fluent in Siri Bisaya now. And if you have books you want to recommend and you have the EPUB file, I am happy to receive 😀)