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One night I stepped out of the shower to the booming warning of my fire alarm. BEEP BEEP. BEEP BEEP. I wrapped my towel around my body and looked down the hall. Smoke. No flames.
Really? Now?
I called to my dog as I ran into the dining room. Smoke here, too. No flames.
I called out, “Fire!” to nobody. My dog ran barking into the room to welcome the unexpected guest.
Front door? Back door?
I tried to evaluate where the flames were. Couldn’t tell. I chose the front door as my exit.
I grabbed my coat and car keys and leashed my confused dog as I retucked the towel around my body. Was it too late to run down the hall to get shoes?
Yes, too late for shoes.
In tandem, my dog and I ran down the steps to the front door. Just before we reached the bottom, the calm part of me shouted for me to stop.
I stopped.
The calm part of me reminded me that all rooms appear to be smokey right now since my eyes are broken. And that low light always intensifies the smokey look.
I stepped down another step, “Fire! Hurry, must get out… that fire alarm…”
This calm part of me suggested that the alarm could have tripped from shower steam.
“But, that’s never happened before.”
The calm part of me shrugged at inconvenient firsts.
I stood on the bottom step and listened for the cracking of flames. Nothing. I touched the floor to feel if it was hot. Nope. I inhaled deeply to check for the smell of smoke. Not at all.
After a few minutes the fire alarm stopped.
My dog pulled me towards the door, not because the house was on fire, it wasn’t. She didn’t want to miss an opportunity to go for a walk.
Not this time, sorry puppy.
You may have noticed that I haven’t written lately. Doctors' orders: I can no longer do anything that hurts/irritates/inflames my eyes—for the same exact reason that you must always refrain from sticking your finger into your eye—it can do damage. For me, anything that makes my inflamed eyes hurt--more, can intensify my eye drama.
No working. No traveling. No hiking. No driving at night. No driving to unknown places. Very Limited screen time. Very limited reading. Very limited writing. Limited time away from home.
These days are dark. I listen to podcasts (Diary of a CEO, Mel Robins) and audio books.
What happened to my eyes? It’s a mystery.
Consider these scenarios:
Scenario #1: Nine months ago I got pink eye (conjunctivitis) (an eye infection) that cleared, but left a trail of hate (pain, dimness, blurriness, cloudiness) that still affects every part of every day.
Scenario #2: Nine months ago I got an eye infection. (conjunctivitis) (pink eye) The first doctor I saw gave me meds that I had a severe allergic reaction to (Polymyxin B Sulf-Trimethoprim—a sulfa drug) that caused my vision to go blurry and cloudy and dim and brought intense pain all of which continue to affect every part of my every day.
Scenario #3: At the age of 58, my eyes—who had never even met an ophthalmologist and didn’t know eye drops were sold over the counter, deteriorated for absolutely no reason.
Feel free to leave your first and second scenario choices in the comments below for what you think happened. All votes counted.
Doctors can’t figure out exactly what kind of medical witchery has a hold on me since I got the pink eye and started the medication on the same day.
Yeah, complicated.
Ever the researcher, I googled “Can pink eye affect your vision?” and the answer was, “Only in very rare cases.”
Right now, doctors agree on one thing: this is a very rare case. I am 100% disabled – with hope that I will heal one day.
Is it just me, or is that dose of hope a little too small?
I swore that I wouldn’t write here until I had good news, not wanting to be the bearer of bad news or write about the uncertainty of my medical life; I’d prefer to write in the past tense, after I’ve healed. But no matter how much I tap out during this medical choke hold; I remain in a medical choke hold.
May as well write my ten minutes a day right here. (I write ten minutes a day only when the pain is manageable.) (This took about six weeks to write. But, hey, no complaints from me: I’m writing.)
Luckily, I have some of the best eye doctors in the country who are tired of me having allergic reactions (3 so far) to eye medications. The Boston doctor calls and emails me regularly to answer questions and accept the brunt of my despair. In December he told me, “There are three more things we can try.”
Note to self: Stop holding your breath. What will be, will be.
I have been unable to work since July. No, this medical leave isn’t relaxing; it’s like a black cloud of complaint. How do I feel? Bad. What’s new? Nothing. Have I done anything fun lately? Um, define fun.
And when it comes to pain, I’ve got it times three as I deal with a constant ache, pain when focusing/using my eyes and a staggering pain from any light at all, hence my darkened room days.
I mostly stopped answering the phone, since I have nothing to say and mostly skip gatherings of any kind since most people I know have lights on at their parties or large windows that let in sunlight, both of which increase my pain.
The time I feel best is when I am home alone in the dark and don’t have to explain anything to anyone. My doctor has begged me not to isolate, but there is a sweetness in quiet darkness.
No, there will not be a lawsuit. Even though this injury happened at work, in New York, all work injuries are handled by Workman’s Compensation – and learning this Workman’s Comp language is kind of like learning to recite the hieroglyphic alphabet, backwards where the penalty of not following correct protocols is the loss of one’s salary. Yes, I have a lawyer who figures out the fine print for me.
Feeling stuck, I did what any logical woman would do; I turned to astrology to see if it could explain this sudden loss of health. This was a deeper dive into the science of days than I had ever taken before; now and then I read my horoscope for laughs.
I can't pin my desire for answers on trusting or even understanding astrology. Someone online posted the idea. You go to a website and put in all of your private information about where and when you were born, and then the website gifts you will a chart with a bunch of codes, circles and a line drawing of a person.
As directed, I fed my astrology chart to the artificial intelligence program, Chat GPT and directed it to look at my chart and tell me what I wanted to know.
At first Chat refused to be pinned down, adding the word ‘maybe’ into its responses; I asked pointed questions with a fury of one who has limited hope. “Is illness a part of my chart?” “When will this time of medical woe end?” “Can you explain my medical issue through my astrology chart?”
After a while Chat divulged that my task in this life (Be myself), my soul’s wound (I am not living a ‘typical’ life.) and that I should live in a place with a water view.
Hmmm. I do have a water view. I pressed on
After repeated hounding, Chat fessed up. It claimed that I was in the Rahu Mahadasha negative part of my chart (?) that can bring, “… challenges, especially unpredictable or hard-to-diagnose health issues.”
(Yes. Really.)
Finally, an answer. How did I feel? I wasn’t sure, but I sat somewhere between satisfaction at being understood and gross distaste at the timeline. According to Chat, Rahu Mahadasha can last 18 years.
In the end, this gave me another reason to detest AI—bad news without empathy.
F*** you, Chat.
According to this AI monster, I might heal one day but need to wander in hell for at least another year.
F*** you, Chat.
The insurance company and the doctors make all decisions about my next steps. Either I’m stuck in a waiting game, or my life has become the subject of a seventh-grade math test on chance. “What is the probability that I will heal when no doctor can name my condition”?
I post one 40 second reel each day for my skin care company. This is my moderately creative pursuit that goes with a video editing course I took early in 2024 BD (Before Drama). My videos lack ingenuity but permit me to share my knowledge of skin care and feel a sense of accomplishment for--doing something. (@SkinTalkNy on Instagram, TikTok and YouTube.)
Business is not booming at Worthy Skin Care, my company. People on the internet dislike my red puffy eyes and the dark circles that give the striking impression of a woman who has been collecting fist bumps on her face.
People message me: “Have you considered making face-less videos?” and “Your face sets off bells of alarm.” And “Have you looked in the mirror lately?”
Oh, isn’t that internet clever, though?
Note to self: Bells of Alarm. That would be a great name for a disaster alert system, or a band, or a body butter, right? Quick. Somebody. Name something Bells of Alarm.
Clerks and customers in grocery stores beg me to take care of myself. They think I am suffering from domestic abuse. Several have offered me money to “get away,” others have invited me to attend AA with them.
Trying to tell strangers that I don’t drink alcohol or live with an abuser and that I have a rare medical condition that makes it look like I am beat up, seems a little too fiction. I say to them, "I haven't been punched in the eye." and walk away.
I'm too tired to tell this long tale to every neighbor who has a dog.
Am I the only one who is grateful that 2024 is out of days? Here’s hoping that 2025 blows healing my way and peace and goodness to us all.
Note: If the people who give out the Nobel Prize for Medicine had a prize for repeatedly getting strange, never-before-seen medical issues, I am sure to win that prize.*
*In case that does happen, would you like to come to the after party? (Hold off on buying your plane ticket just yet….)
Happy New Year to All.
XXOO Love Holly
PS. If you know anyone else who has suffered for nine months – or longer from Pink Eye Syndrome (My invented name) please connect us.
PPS. If you know anyone who has suffered for nine months – or longer after taking Polymyxin B Sulf-Trimethoprim—a sulfa drug, please connect us.
💚 My New Year's Wish is that somebody somewhere will have answers for me.
PPPS. Happy New Year to YOU!
PPPPS. Being 100% disabled is in reference to being able to work. I can still walk, talk, etc. TY for your concerns.
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