The day my life changed

Submitted into Contest #58 in response to: Write a story about someone feeling powerless.... view prompt

36 comments

Creative Nonfiction

Author’s note:

Narcolepsy is a neurological disorder that affects 1 out of 2,000 Americans and 3 million people worldwide. On average, it takes 10 years from symptom onset to diagnosis. About 75% of these cases are classified as Type 1: Narcolepsy with Cataplexy. This is my diagnosis and for me the journey took 12 years. This story is a combination of real life events that eventually led to my diagnosis 10 years ago. I’ve included more links and information in the comments if you want to learn more. 


***


My clumsiness has officially become a problem, I thought as I sat in the ER waiting room. I searched the surprisingly empty room looking for a distraction from the pain in my shoulder with no luck. 


As I sat there, a faint voice in the back of my mind insisted that my problem was much more than mere clumsiness. I agreed, of course, but not with a great deal of confidence. 


I'd lost count of all the doctors I'd seen and tests I'd been through over the last ten years. While my symptoms worsened, I’d been assured that it was nothing to worry about. The extreme fatigue, sleepiness, contradictory insomnia, confusion and difficulty concentrating were all simply signs of depression and poor sleeping habits. 

 The inability to distinguish dreams from reality at times, as well as the full on hallucinations I experienced at other times were hallmarks of anxiety. And the way my muscles seemed to turn to jelly at the strangest times? Nothing more than clumsiness, I was told with an indulgent smile. 

I'd stopped asking the doctors why this clumsiness appeared one day, out of nowhere. This clumsiness was the reason for my visit to the ER on this day. Something had startled me while walking down the stairs and my legs suddenly buckled, causing me to roll the rest of the way down - doing something exceedingly painful to my right shoulder in the process. 


This doesn't mean I ignored the advice and recommendations, though - quite the opposite. I was desperate for a return of my old self, so I’d done everything that was suggested. I’d been to psychologists and psychiatrists, and took every medication they prescribed. I’d been to nine physical therapists, which I actually enjoyed.


I had impeccable sleep hygiene. No seriously, I could write a book about it as long as my readers didn’t require a happy ending where I say I sleep great now and wake up rested. I exercised daily and followed a strict diet.


The overarching theme was that if I just tried harder, or was better at being an adult, all my problems would disappear. It was frustrating when my efforts failed, but I still held onto the idea that it was within my power to fix myself. 


I even meditated - twice a day for twenty minutes. It was the one thing that I thought actually helped, especially with my anxiety around doctors. 

So that’s what I did while I waited. I closed my eyes and focused on my breathing. I counted the in breaths and the out breaths. When the pain shot across my collar bone and down my arm at the movement of my breath, I told myself to feel it and allow it to pass. Everything is temporary. Pain is temporary. 


“Ms. Foster?” a young woman said.


I opened my eyes and tried to match her smile as I got to my feet. 


“If you’ll follow me, we’ll get some X-rays of that shoulder, then I’ll bring you back to the waiting room while they’re being reviewed.”


I followed her through the maze of the hospital to a cold, dimly lit room full of imaging equipment. After a moment of checking things behind a partial wall towards the back of the room, she returned and guided me to stand with my back against a wall where a X-ray holder was mounted. Then she maneuvered another holder attached to a large mechanical arm until my right shoulder was sandwiched between the two of them. 


As she loaded the film into the contraption, my legs started to shake. I don’t know why standing hurt my shoulder more than sitting, but it did. The woman, once finished with apparatus, told me to stand very still then headed back behind the partial wall to take the picture. I did my best to comply, and focused on my breathing again. I heard a faint buzz and click. I knew I hadn't done a good job of keeping still. I felt ashamed of my failure as she returned from behind the wall.


“I know you’re in pain, but I really need you to keep still,” she said. “Or we’re both going to be here all day.”


“I’m sorry. It’s the standing,” I said. I hated disappointing medical professionals, and it felt like the only thing I was good at lately. 


She sighed and left the room. I could feel her frustration and had to fight back tears. The tears weren't just about her or this situation, but rather the culmination of prolonged sleep deprivation, confusion and pain all landing on me in an instant. 


She returned with a chair and asked me to sit. I did. Weakly, I thanked her, causing her to sigh again.


“I don’t know if this will work with you sitting but we’ll give it a try. I need you to sit up straighter and angle your shoulder a bit this way.”


She pressed on the front of my shoulder and an intense stabbing pain shot across my chest. The clumsiness thing happened instantly. My neck went limp as my chin jabbed into my chest. My arms and legs suddenly felt like rubber. It lasted only a second and then my muscles were back, but shaky. 


Unfortunately, my voice had not returned as quickly.


“What was that?” the woman said, clearly annoyed. “I barely touched you. If you’re not going to cooperate, I can take you back to the waiting room.”


When my voice returned, I said, "Sorry." It came out slow and slurred. I hated how I sounded after these little incidents.


“Are you under the influence of something right now?” 


Unlike me, her voice was strong… and angry. I cleared my throat and willed my muscles to work. 


“No, I’m not. I think it’s the pain. I’ll be okay.”


I tried to move to my entire body the way she wanted, hoping to avoid another touch to the sensitive area. 


“Okay,” she said, “one last try.”


I was so busy trying to position myself the way she wanted, I didn't see the hand going for my shoulder again. This time her fingers felt like they were digging into the tissue of the joint. I could feel the sharp pain reaching all the way in my stomach, urging me to tap out of this fight. The next thing I knew, I was on the floor. 


I must have slid out of the chair when my muscles failed me again. I could tell my legs were bent up behind me as I laid there, paralyzed, on my back with my eyes open. They blinked rapidly and randomly, not under my command. 


I'd smacked the back of my head on the floor when I fell, but luckily it was a short fall. I tried to move my legs, to straighten them out into a more comfortable position but they refused to respond to my wishes - not even a twinge answered my requests. 


My head ached and the jolt from the fall made the pain in my shoulder nearly unbearable. The woman stood above me, telling me to get up. I tried to tell her that I was trying, but no words came out. 


Cold fear gripped my insides as I slowly realized that I wasn't coming right back out of the muscle-less state this time. The clumsiness had never been like this before, and it terrified me. I couldn't move any part of my body, no matter how hard I tried. All I could do was lay there, silent and scared. I was a puppet and someone had just cut my strings. 


The woman called for help, then grabbed my right arm to try to pull me up. I wanted to howl in pain, but no sound escaped. I wanted to kick her, but again my muscles betrayed me. She let my arm go, and I collapsed back to the floor like a rag doll. She threw her hands up in frustration and left the room. I felt an angry tear run from my eye and pool in my ear. Forgetting that I was paralyzed I tried to wipe it away. When I felt no response from my muscles again, an intense frustration joined the pain. 


For the moment I was alone. I tried to use my brain to find a way out of this nightmare, but my mind was exhausted and distracted by the pain and the terror. And the worst was yet to come. 


The woman returned with a young man wearing matching pale green scrubs. 


“What happened?” he asked, looking at me confused.


“She just slid out of the chair and now she won’t get up,” she said, crossing her arms. 


“Jesus, maybe she passed out. Did you ever think of that?” he knelt down next to me, and checked my pulse. I felt a moment of hope at his gentle touch. He patted the side of my face with his palm quickly - not quite slaps, but meant to wake me. When they didn't, he grabbed my shoulders and started to violently shake me. The resulting pain was so enormous that I found myself in awe of it. I could almost see it as something solid, filling the room around me. I started to wonder in a detached sort of way if maybe I would pass out. I found some comfort in the idea. 


“Ma’am! Can you hear me! Ma’am! Wake up!” he yelled into my face. I could feel his breath on my cheeks. I absently wondered if the woman had interrupted his lunch, as his breath smelled strongly of onions.


I am awake, you jackass, I thought, but of course could not say. I still couldn’t say anything, do anything. 


He straightened my legs out, and I wanted to sigh with relief. My knees had been starting to hurt from being twisted like that, but it was such a minor pain compared to my shoulder that I hadn’t really noticed it until it was gone. As if punishing me for this thought, he began to pinch me. He pinched my earlobes, my thighs and my fingers. I would have laughed if it’d been possible.


“I still think she’s passed out,” he said once done with the pinching.


“No, she’s not. Look - her eyes are blinking,” the woman responded. 


“I’m going to try a sternum rub, just in case.” 


I didn’t like the sound of that. Panic gathered in my throat as I tried with all my might to thrash and scream. I watched helplessly as he made a fist with one hand and started rubbing his knuckles very hard up and down the middle of my chest. 


I didn’t know pain had such heights until that moment. In addition to blinding pain, I was extremely nauseous and started having trouble breathing. The world around me went dark for a moment, then returned. I prayed to go back to the darkness. The man stopped the torture for a minute and leaned back on his heels. He was panting and out of breath from the intense pressure he’d put on my chest. 


“I don’t know what to do next,” he admitted. “I suppose she could be having a seizure?”


He turned and looked at the woman. I followed his gaze to her, trying to beg for help with my eyes. She shrugged, and he turned back to me. 


“I’m going to try the sternum rub once more, but I think we might want to get a doc,” he said. 


No, no, no! I silently screamed. As his knuckles raked against my chest again, I wondered what I could have done in this life, or some other, to deserve this. For the first time since my strange symptoms began a decade ago, I felt myself give up. I no longer cared about anything but ending this pain. I decided that if I ever got out of this, I was going straight home and would never speak to anyone about my problems again. I was completely done, and held onto that decision like it was my ticket out of this hell. If I hadn’t already been lying there like a bag of bones, I would’ve gone limp under the weight of this final decision. 


And wouldn’t you know, just when I gave up hope, a reason to hope entered the room. A man, wearing a white coat ran into the room and pulled the young man off me.


“What the fuck are you doing?” the doctor growled. He didn’t wait for an answer though. “Both of you - I want your backs against the wall.”


“We can just go…” the woman said in a small voice. 


“No. I want both of you to stand right there,” my savior said, pointing to the back wall. “Tell me what happened - quickly.”


The woman explained how I slid out of the chair and stopped responding. How she tried to get me up and couldn’t, so she went for the other tech. The male tech took over and described his efforts to wake me using pain stimulus techniques. 


The doctor moved around the room, but I couldn’t see what he was doing. He returned with a pillow and blanket. Gingerly, he lifted my head and placed it on the pillow. Then he covered me with the blanket with equal care. I felt another tear escape to the pool in my ear at his kindness. I’ve never been a fan of fairy tales where knights ride up on white horses to save the day, but in that moment, that was how he appeared to me. 


“What is the patient’s name? And where is her injury?” the doctor asked the two techs, still standing against the wall in timeout. 


Neither answered, until he turned to look at them. 


“I’d have to go get her chart,” the woman said softly.


“Do that,” the doctor said. 


She returned with the file and slowly read: “Katina Foster. Right shoulder - fall down the stairs.”


“Katina,” the doctor said to me, his voice now gentle. I focused on his face and realized I’d moved my head a fraction of a degree. It was barely a movement at all, but it was something. He noticed and smiled.


“I promise you are safe now. I’m going to pick up your left hand. I want you to try to squeeze my hand when I give you the signal, but it’s okay if you can’t right away. We’re in no rush.”


He picked up my cold, limp hand, draping it over his warm one. After a minute he nodded and I tried to squeeze. Joy and relief flooded my mind when two fingers responded ever so slightly.


He nodded, “Good work. You’re coming out of it now. I think severe pain must be a trigger for your cataplexy, or maybe it's the fear that pain creates. Either way, I think getting your pain under control will help you to come out of it. I need to check your chart first, but if you've been given something for pain here before without issue, would it be okay to give you something to take the edge off? Just squeeze for yes." 


I squeezed for yes, three fingers responding this time. I had no idea what he was talking about, but didn't need to know in order to say yes to pain relief. 


The doctor got up, and asked the techs to leave the room. He followed them out and shut the door, leaving me alone in the room. I don't know how long he was gone, but by the time he returned, I could move my legs a little. While he was gone I thought about that word - cataplexy. I’d never heard of it. Hope tried to spark in my chest but I tamped it down. I’d been through this so many times. I told myself I was beyond hope now.  


He returned with a nurse and a wheelchair. The nurse gave me a shot, and the doctor sat down on the floor next to me while it kicked in. 


"My sister has narcolepsy with cataplexy, too," he said, just like we were old friends continuing a conversation that had been interrupted. "It was really scary sometimes, but once she understood it, things got so much better. She just finished her PhD.”


I was touched by the admiration for his sister I heard in his voice. The pain medication took effect quickly, and now that I wasn’t being attacked, I slowly started to regain control of my body.


“Thank… you,” I said in a hoarse whisper. 


The doctor stayed with me long enough to finish my X-rays. He gave me the name of a good neurologist, along with the name of the test I needed to confirm his assumption about my diagnosis. When I was ready to leave, the office manager told me that the doctor didn’t even work at that hospital. He’d just been meeting his wife for lunch when he’d passed my room. I never saw him again, and never even got his name.


I think about that day a lot, though. I think about how incredibly lucky I was. And sometimes - very rarely - I wonder if he was another one of my hallucinations.


September 10, 2020 19:29

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36 comments

Elle Clark
22:17 Sep 10, 2020

Oh my goodness! This had me completely hooked and when I got to the bit where you fell over, I think I doubled my reading speed trying to find out what happened. This is horrible and I’m so sorry that you experienced it! Glad that you got a diagnosis and have been able to have a life where this doesn’t define you but even so - my god. I wanted to reach into the story and fling the sternum rub guy into a wall. In terms of story editing, I think your first few paragraphs start off a little slow. There’s a lot of backstory that could pe...

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Katina Foster
00:52 Sep 11, 2020

Laura - You're the best, for real. I'm having a rough week and reading your comments totally made my day. Good feedback too, I had a feeling the "action" should come sooner but couldn't quite figure it out. Thank you!

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Elle Clark
06:26 Sep 11, 2020

Oh I’m so sorry that you’re having a bad week. Have you tried reading this story? Because it’s so good that it’s sure to improve your mood. I hope you feel better soon and if there’s anything I can do to help, let me know!

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Katina Foster
17:42 Sep 11, 2020

Aww Laura, thank you! I just need this cold, rainy weather to move on. Isn't that how it always is in the UK? At least that's how the movies make it seem. If Americans are ever allowed to travel again, I'll have to see for myself. I laughed when you recommended reading my story because I seriously reread yours after posting mine. I needed to see your character kick some ass again after reliving that day. :)

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Elle Clark
21:28 Sep 11, 2020

I want to be indignant and say that it’s just bad press but it has been raining today. And yesterday. Likely to rain tomorrow as well. But we had nice weather ... last week? Maybe the week before? Aw, that’s a ringing endorsement! My one Order of the Blood Moon is a silly vampire one if you’re still looking for things to read that might cheer you up. Phoenix of the Sea is another woman taking back power story, too. Or I can recommend any of Jonathan’s back catalogue. He has a great sense of humour, as I’m sure you already know! When ...

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Katina Foster
22:10 Sep 11, 2020

Yes! I love that idea! It's amazing how most of the people I've come across on here have been scattered all over the world. It would make for an interesting convention! Thanks for the recommendations too. I'll recharge my battery with some empowering and funny stories tonight. :) Here's some artifical sunshine for us. ☀️☀️☀️

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Katina Foster
19:29 Sep 10, 2020

Author's note continued: Last year, a number of organizations worked together to establish World Narcolepsy Day - September 22nd. I don't define my life by my disability, but it is a part of me. I'm sharing this story in hopes of spreading awareness. For more information on World Narcolepsy Day, visit https://narcolepsynetwork.org/world-narcolepsy-day/ For an overview of both Type 1 & Type 2 narcolepsy - it's prevalence and common misconceptions - check out this link: https://disturbmenot.co/narcolepsy-statistics/#:~:text=%20The%20Top%...

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Jonathan Blaauw
06:40 Sep 18, 2020

Congratulations, you have been invited to a special, pre-release screening of J.Blaauw’s new story. Date: Whenever you’re able Time: See above Place: My page Dress: Formal Entry fee: 1x ‘Like’ of the story will be required for entry. RSVP: Not necessary See you there! 🎉🎉🎈🎈

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Jonathan Blaauw
18:32 Sep 16, 2020

On a scale of 1 to 10, what would you calculate the chances of us getting a new story from you this week are? I will also accept it as a percentage probability expressed to two decimal places. It's important to know because there's a 98.46% chance that I will be extremely disappointed if you don't provide us with one. I might even cry (34.76%) No pressure, though 😃

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Katina Foster
23:13 Sep 16, 2020

Because of this comment, I've noticed a dramatic increase in the chances. From 43.19% to 88.91%. And you...? I am working on those donations by the way. I've got $7.03 so far, but you might not want these pennies, even with the coin shortage. So let's call it an even $7.00.

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Jonathan Blaauw
04:22 Sep 17, 2020

Is there a coin shortage? I didn't even know. You guys have had it all this year - man eating wasps, fires, hurricanes. Plus the plague, of course. Your charitable efforts are commendable, thanks. My initial smart goal was to retire this weekend. But I can see now that's not realistic. So I've made it next weekend. My story chances are about the same as yours (88.92% though) so we're looking at a September 18th international release date, hopefully.

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Katina Foster
06:13 Sep 17, 2020

Next weekend is much more reasonable. Gives me time to plan your retirement party, too. Because of the plague, it'll have to be a virtual party, unfortunately. Bring your own party and booze - no man eating wasps or (un)natural disasters allowed. I don't really know if there's a coin shortage, as all of my 15 coins are still in the same cigar box where they've lived since 2005. Although, maybe they've reproduced by now. Cigar boxes are supposed to have to great interest rates. Any fascinating news from South Africa? (Other than your reti...

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Jonathan Blaauw
18:50 Sep 17, 2020

You are just the best, you know that? Thanks for making me smile 😊 I think everything's fine here. Working from home I've spoken to more Americans than locals this week, but my cat tells me SA is still here in one piece. All the drama in the world is in your neck of the woods at the moment, it seems. For a change 😝 I actually believed you on the coin shortage. You were very convincing. Please let me know when your story arrives, so I can read it asap. Also your novel, looking forward to that. I may need some tips, it's quite daunting. I ...

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Katina Foster
16:25 Sep 18, 2020

A couple of things... 1. I'm glad to hear SA still exists (if we can trust your cat's intel.) 1.5. Making you smile is one of life goals now, so YAY. 😊 2. Who are these Americans you're talking to all day and how do I get on the list? 3. If you are serious, I would be beyond honored if you wanted to read my first draft of my first novel. Or maybe I should wait until it goes through a few edits? I'm feeling a bit overwhelmed by the story editing process right now. 4. This one is sort of a secret: I have no idea what I'm doing. Wh...

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Andrew Krey
02:16 Sep 15, 2020

Hi Katina, I loved this story! I don’t know whether it was from the truth within it or not, but it doesn’t matter, great story! I’m really sorry to hear you suffer from this, but I’m sure you don’t let it hold you back; I suffer from mild insomnia (and when I can’t sleep is often when I come up with story ideas) but I can’t imagine what your condition must be like. Thank you for sharing this story. Sharing any story is a brave thing to do, but one so close to you takes it to a whole new level. What I really liked in your story was that it...

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Katina Foster
23:21 Sep 16, 2020

Thanks so much Andrew! :) Thinking of stories is a good way to pass the time when you can't sleep. I'll have to remember that tip.

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Andrew Krey
12:24 Sep 17, 2020

You're welcome, take care.

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DK Marie
17:14 Sep 14, 2020

Wow! This gripped me from the first sentence and had me tearing up (with anger, sadness, and happiness) throughout the story. You are a talented writer. Also, thank you for teaching me about Narcolepsy.

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03:00 Sep 13, 2020

Wow I’m blown away. This is good writing. It is so emotive and powerful. This is an important story and you wrote it beautifully. You should be very proud of yourself

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Katina Foster
22:37 Sep 13, 2020

Thank you so much Sarah!

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Jonathan Blaauw
15:09 Sep 11, 2020

Wow, this is a very powerful story. I think writing something like this takes extreme courage, and putting it out there takes even more. For that reason alone, this is remarkable. That you’ve written it in a way that makes the reader want to appreciate every word while at the same time rush ahead to find out what happens, elevates it even further. Excellent writing! I know that the confusion and despair from being misdiagnosed can be as crippling as the underlying condition itself. Being in that position is the definition of hopeless, an...

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Katina Foster
17:36 Sep 11, 2020

You just keep being you, Jonathan! I made some updates to the beginning. I love statistics and tend to bore those around me with facts about my condition, so I tried to keep it short (based on your excellent suggestion). Did you know that Harriet Tubman and Jimmy Kimmel had/have narcolepsy? Not the same type as me but I read a story about Tubman that indicated the idea for the underground railroad came from a dream. We narcoleptics are fantastic dreamers, that's why we're so exhausted. I can't say thank you enough for your kind comment...

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Jonathan Blaauw
08:57 Sep 12, 2020

I think that’s why awareness is so important. My only previous knowledge of narcolepsy came from Rowan Atkinson in Rat Race, and I imagine it’s commonly thought of as being ‘not a serious thing.’ That’s why your story is so important. Even if you remove your name for anonymity, I really think it needs to get out there. This story didn’t come across as self-indulgent at all, so you really don’t need to promise to return to the old stuff. It’ll be nice to get some interesting new stories from you because you’ve got such good taste in books,...

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Katina Foster
02:21 Sep 13, 2020

Very true. And as far as I know, she's still in the midwest area, so I shouldn't be so hard on her. So, Mr Bean in Rat Race was also my only education on narcolepsy before being diagnosed. As such, my neurologist had to spend more time than I want to admit trying to convince me that portrayals of narcolepsy in the movies were highly inaccurate. I feel kinda bad for her having to argue science against the Rat Race movie. Not my finest moment, but she’s forgiven me. Now it's just a funny story she tells at conferences. I hope your new ...

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Jonathan Blaauw
06:29 Sep 13, 2020

Interesting – I nearly starred in The Dark Tower. Sort of. Some of it was filmed in an abandoned shopping center down the road from where I worked in Cape Town, and I walked past the set several times a day. If only the director had noticed me, I’m sure I’d have gotten a role. Oh well. Their loss. The movie was rubbish anyway. I actually wanted to ask if you’ve seen the trailer for The Stand, coming in December? It looks amazing! I’m hopeful because the recent King movies haven’t been as awful as previous ones. It was decent, Pet Semetary ...

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Katina Foster
22:35 Sep 13, 2020

I keep getting distracted before I hit reply and when I come back to the mini-novel I've written you, it has disappeared. Because I guess...the internet is trying to edit me. Anyway, yes! Super excited about the Stand series! The movies lately have been good, but the series have been even better! Castle Rock, 11.22.63, the Outsider - so good. I'm glad to hear that all of us haven't been thrown out with the proverbial bathwater of our commander in chief. You're right about humanity, and being an optimist, I'm hoping for the best. In th...

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Rayhan Hidayat
03:24 Sep 11, 2020

Holy cow, that was incredible. The way you described pain was unlike anything I’d ever read before, I could not take my eyes off the screen during that sternum rub sequence. This was one hell of a survivor story, and it’s good to hear you got a diagnosis. The “Mysterious Benedict Society” series of books featured a character with narcolepsy, but never like this. This was heartbreakingly real. Stay strong, Katina, and keep writing!

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Katina Foster
17:13 Sep 11, 2020

I'm definitely going to check that series now! This was obviously a very severe cataplexy attack, usually it just results in broken dishes lol. Thank you for your kind words!

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Yolanda Wu
02:56 Sep 11, 2020

Wow, this story was so well-written. The way you wrote the details and the voice was amazing. I loved your realistic depiction of the frustration of not getting a diagnosis and how the doctors simply mark it as 'clumsiness' or 'depression', which is something I have never experienced personally, but I have heard many stories about it, and it is so disheartening. I love that there is a World Narcolepsy Day which definitely prompts me to want to know more about it. I'm glad you shared this story since representation is so, so important. Amazin...

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Katina Foster
17:11 Sep 11, 2020

What a lovely comment! Thank you Yolanda! It's taken me a while to get to this point where I feel comfortable sharing my experiences. Your comments are very validating!

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Yolanda Wu
22:38 Sep 11, 2020

I'm sure it has not been easy, and it is so brave of you to share this story, and bring more awareness and education to Narcolepsy.

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Tia Markovich
01:10 Sep 22, 2020

I'm not as articulate as others and have a hard time expressing my thoughts in comments. I just have to say that your story brought me to tears because even though I knew of your condition, reading your words made/makes me feel like I was there experiencing everything you have/did. It's powerful.

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Katina Foster
01:22 Sep 22, 2020

You've been a huge support to me, Tia. I know you are all too familiar with the runaround that comes with a rare condition and dealing with the medical world. Love you cousin ❤

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