I Have the Strangest Disease - Alice in Wonderland Syndrome

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Hi, my name is Morgan. I was diagnosed with a disease I can guarantee most of you have never even heard of. When I tell people about it, they look at me like I’m crazy. Half the time they think I’m making it up. But listen to my story – and try to imagine what it would feel like if this was happening to you. You ready? Ok, let’s start at the beginning. Things got weird when I was about 13. It wasn’t a gradual change. One day I woke up, just like every other day, but everything was just…different. The first thing I noticed was my breathing. It was so loud and raspy that it actually hurt my ears. Ya know like when you’re watching fireworks and they’re so loud you need to cover your ears? That’s how my own breathing sounded. You might be thinking it was some sort of thing like asthma. That’s what my parents thought at first, when I told them my breathing sounded really loud. But they looked at me, and listened, and said it just sounded normal. The other thing is…it wasn’t just my breathing. Some colors, especially yellow and pink, seemed brighter suddenly, like, so bright that they almost hurt to look at. But on the other hand, blues and greens were so dark and muted that I couldn’t even tell the difference between them. It was terrifying. It was like the whole world suddenly became so overwhelming that sudden noises would make me cry, like I was a baby all over again. But that was all I noticed for a while: my loud breathing – sometimes I could hear my heartbeat too, and it sounded like a drum in my chest – and the different colors. In hindsight, knowing everything I know now, those changes weren’t so bad, and I could function pretty normally. I didn’t know it then, but it was going to get much worse. One night, we’re sitting at the dinner table when all of a sudden, I noticed that my family, and the table, and everything ON the table - everything except for me – was shrinking. They became tinier and tinier. I couldn’t believe my huge hands weren’t crushing the table! I took up the whole room! I freaked out and started crying. Mom and Dad had no idea what was going on, because obviously the table wasn’t actually shrinking. They sent me to bed early, saying I was just tired and needed to rest, but I heard them talking in the hallway about sending me to the doctor. I was petrified. I was afraid they thought I was crazy. Heck, I thought I was crazy! So the next day we got an appointment. At this point, the symptoms would just wash over me in waves. One minute everything would be almost normal, and the next, the world was so loud and bright and overwhelming that I just wanted to curl up in the dark. My doctor confirmed that my heart and lungs seemed just fine, and I didn’t have any kind of fever that would cause me to hallucinate. “Have you eaten anything strange recently?” No, I haven’t. “Have you had any trouble sleeping?” Just since these symptoms started. “Are you experiencing any of your symptoms right now?” YES, your voice is as loud as a foghorn and your stethoscope is so big it could cover my whole body! I tried to say no, but his voice was so loud it made me wince. He wanted someone else to take a look at me too, so he referred us to a neurologist. Mom explained that a neurologist was a brain doctor. He got us an emergency appointment – yep, they definitely thought I was crazy. My symptoms were so bizarre, we got an appointment with the neurologist the very next day. Dr. Adams was a quiet, gentle woman, and when she put a reassuring hand on my arm, I immediately felt less anxious. “So, Morgan, I know a little bit from your doctor … but could you tell me in your own words what’s been going on?” All of a sudden, I felt like crying again, but I held it together. I told her how one morning I’d woken up, and everything had been LOUD, and how some colors were suddenly super bright but others were so dark I almost couldn’t see them. And how now, some things would suddenly shrink, and others would grow, and sometimes time seemed to go super fast or incredibly slow. “Are any of those things happening now?” “Yes.” “Could you give me some examples?” “This corner of the room where we’re sitting is normal size, but that corner,“ I pointed, “Is so tiny that it looks like the corner of a dollhouse.” “Morgan, that doesn’t make any sense,“ Mom started, but Dr. Adams lifted her hand to cut her off. “It makes complete sense to me, Morgan. I’m just going to do some quick tests.” She took her little flashlight and looked in my eyes, had me follow her finger while she moved it back and forth and towards my nose, made me look at flashcards of different colors and shapes, and finally watched me as I tried to walk in a straight line to the tiny corner of the room and back. “Are you struggling to balance because you feel wobbly, or because that part of the room looks like it’s a different size?” “It looks teeny and my feet are so huge – my balance is normally fine!” At the end of the appointment, Dr. Adams reassured us that all my tests were normal. She was going to schedule a brain scan just to make sure there wasn’t a tumor or something causing the symptoms, but she thought she knew exactly what was going on. “You’ve got very distinctive symptoms, and they’re pretty rare. In fact, I’ve only seen them once before.” Then she turned to my mom. “I think it’s very likely that Morgan has what’s called Alice in Wonderland syndrome. It isn’t dangerous, and children usually grow out of it – but sometimes it can stick around.” My brain scan came back normal, just like Dr. Adams had suspected, so that was my diagnosis. Alice in Wonderland syndrome, named after the part in Alice in Wonderland where she shrinks and grows. It sounds fake, doesn’t it? Sometimes people do think I’m lying, but I promise it’s 100% real. You guys can Google it and find it on Wikipedia if you want, but I’ll tell you a little more about it now. Alice in Wonderland syndrome is a disorder that changes your perception of the world. It’s super rare, and nobody really knows what causes it. They just know that it isn’t a hallucination, and it isn’t caused by a problem with your eyes. For some reason, there’s just abnormal activity in the parts of my brain that process the environment, so things that normally make sense – like the size of a room, or the sound of a voice – can change and get all distorted. It’s more common in kids, and like Dr. Adams said, you usually grow out of it, but adults can get it too. I kept having meetings with Dr. Adams so she could try to find out if there were any triggers that brought on my episodes or made them worse. There were some things she thought would trigger it, but didn’t – like loud noises or overwhelming environments. And then other, little things, that would – like if I tried really hard to focus on a face, or if I got stressed out by a complicated task. It was really important to figure it out, because I had just gone back to school after the summer break – let me tell you, if you think starting eighth grade is hard normally, it’s a million times harder when sometimes you feel like you’re the size of a horse and you have to be careful not to tread on your tiny classmates! I tried to keep it a secret as much as I could. Explaining it to people was just…exhausting. They never understood it. I know - it SOUNDS crazy, and because nobody knows what causes it and there’s no, like, visible proof I have it, I could be making it up. But Mom, Dad and Dr .Adams all believed me, and we were figuring out how to deal with it. It helped to curl up under a weighted blanket when all the sounds and colors got to be too much. I started to keep a journal to keep track of what I was seeing or hearing, when it had started, and how long it lasted: the fishbowl looks so huge that the goldfish are the size of sharks. They are bright orange, and it hurts my eyes. This started at 12.04, and it lasted for 15 minutes before they were back to normal. I also started to do some pretty abstract art. To be fair, it’s a lot easier to do weird, impressionist painting when that’s what your whole world looks like! It was soothing for me to express the world the way I saw it, and when people looked at my paintings, they could finally see and understand what I was seeing. By the time I got to 10th grade, my episodes started to get shorter and less frequent. Yeah, that means I spent a couple years living in a world that looked completely different every day. Things would still seem big and small, and time would speed up or slow down, but it was less intense, and didn’t last as long. I was relieved, but I also weirdly missed it – and always in the back of my mind, I didn’t know whether it would ever completely go away. I’m in 11th grade now. I still have Alice in Wonderland syndrome, but it’s continuing to get less and less crazy. It doesn’t affect my life too much. I have some great friends who totally believe me about the whole thing, and I’m even more passionate about my art than ever. I think when I graduate I want to have a career as a painter, so that I can keep capturing and expressing the way that I see the world. Still, there are some things I can’t do, like drive a car. I’m not sure if I’ll ever want to learn to drive. What if it comes back one day, and I’m in the middle of a huge road, surrounded by cars the size of ants? No thanks – I’ll stick to taking the bus for now. So, there you have it – my crazy disease! I hope you believe me, but if you don’t…google it right now. Yeah, it’s rare, but there are still hundreds of people just like me. I hope that more people keep finding out about Alice in Wonderland syndrome so that more research can be done into what causes it, and how to treat it, because I would really like to guarantee that it won’t interfere with my life anymore. Do any of you guys have any unusual conditions or diseases that I might not have heard of? Share your story in the comments, and raise awareness so that we can all learn a bit from each other! And don’t forget to like and subscribe, if you want to hear more stories like mine. It really helps the channel. Thanks for watching and see you guys next time!
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Channel: MY CRAZY STORY
Views: 129,696
Rating: 4.8340702 out of 5
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Id: mNmSznn17PM
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Length: 10min 13sec (613 seconds)
Published: Fri Jan 24 2020
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