Friday, February 10, 2012

Overcoming Adversity Like a Boss

I just realized that I never got around to posting the all too true tale of my not being able to walk from October 2010 through May 2011. I told bits and pieces, but never all of it in one place. So here it is, copied from the chat box on 20 Something Bloggers, where I told it to an enthralled and awesome audience last night. That's why the sentences are in fragments and some of them are not capitalized. I'll insert random pictures so it doesn't seem like an overwhelming wall of text.

It all started out in the summer but I only stopped being able to walk for a week and then I got better. I went to tons of different hospitals and nobody could figure out what had happened. One doctor implied that he thought I was insane. They all agreed that it was probably just some freak thing that would never happen again. Anyway, everything is fine and normal. And I'm back to hacky sacking four hours a day. Until October. I wake up one morning and I get ready for class, like always. I go to class and everything's fine. And then I go to my next class, which is physics. And everything is fine... Until I try to leave at the end. I stand up but I can't lift my feet off the ground to walk. It's like they're made of lead. So I get two random guys to carry me up the stairs out of the lecture hall. And then I call my friends and they get their friend to come pick me up and carry me to his car and drive me back to my dorm room. Luckily my mom is always super over-prepared and she made me take a wheelchair to college in case I ever stopped being able to walk again.

Oh hello Mr. Ferris Wheel. You're looking quite sepia today.

At that point, I'm pretty much confined to the sixth floor of my dorm building. My resident advisor assures me that if there's ever a fire, I'm on a list of people that the firefighters will carry down the 6 flights of stairs and to safety. Because during fires the elevators don't work. I see a neurologist and he does all sorts of scans but finds nothing wrong. I try to get help getting to class from a van service for disabled students, because my campus has ridiculous amounts of stairs. But they tell me they can't help unless I have a diagnosis. So I'm stuck in my room and can't go to class. The professors all worked with me and gave me makeup work so I would still pass their classes. Except physics which I would fail since I couldn't do any labs. So I dropped physics.

Oh look, it's a robot. Domo arigato, Mr. Roboto!

Also, my dorm totally sucked as far as being accommodating for disabled students. I couldn't eat in the cafeteria style thing downstairs because my wheelchair didn't fit through the line. And I couldn't wheel my chair and balance food on my lap at the same time. A few times a friend came from all the way across campus and had dinner with me, but the rest of the time, I had to rely on my roommate to get me groceries that I could make in the microwave. Or just snacks and I had to live off that for 9 months. Anyway, the quarter ended and the next quarter began. I didn't register for classes because I had to meet with a school advisor first. And then the disability assistance people finally contacted me and said if you still need rides to class, we can do that. And I told them I still didn't have a diagnosis. And they said that's not a problem. And I wanted to say then why the heck was it a problem two months ago and I had to drop a class because of it. But instead I asked them politely that question. If I could punch them through email, I would have. And they said, Oopsies, we had a mixup, our bad. More or less, not a direct quote. And I wanted to strangle them. But I did not, since I couldn't through a computer. So then I started getting rides to class.

Hello Mr. gloomy building.

And everything was going as well as possible... until one day I woke up and I couldn't talk. I was so freaked out. and i texted my roommate what was going on and she let the reident advisor know and they sent an ambulance. and they scanned my brain and drew blood. and said we don't know what's wrong with you. and then after ten hours of being monitored i could talk again. out of nowhere. but before that they didn't feed me or give me anything to drink that entire time. once i could finally talk again i asked the nurse why i wasn't getting anything to eat or drink. she checked it out and apparently they had accidentally written on my chart that i had a stroke. so i wasn't allowed to eat or drink because people who have strokes are very likely to choke. which didn't make sense. and it was after the hospital had given everyone dinner. so she managed to find me peaches and a pudding cup. and a glass of water. then they had my wheelchair ride people take me back to my dorm. at 1 in the morning.

Fishy! He looks like G's fishy. I named his fishy Porkchop because it's such a fattie.

i was okay again for a while... and then that quarter ended and the next one began and one day i was in the most boring class ever, the geology of national parks. ugh. and everything was fine. until the class ended. and i wheeled myself into the lobby of the building, which was right outside the door to the class. no wait, rewind. i got to the point where my arms were strong enough that i could swing my legs on crutches and sort of walk that way before this part of the story. i got pretty fast at it too. but anyway i was on my crutches and i sat down on a bench in the lobby to wait for my ride. because it was way too far to travel on crutches. and then i had what i could only imagine was a seizure. i was so freaked out. the t.a. from my class saw and called an ambulance. they asked me a million questions and then drove me to the hospital. which was only about ten minutes away. but by the time i got there i had lost my ability to speak again. which i managed to text to them on my phone what was going on and communicate that way. i told them the speech thing had happened before. "told". i mean texted. and then when they got me into a hospital room my arms stopped working as well. i couldn't move any part of my body at all except for opening and closing my eyes. and i was so freaked out. and they did tests and stuff and found nothing wrong. and then they had a social worker come in and yell at me. basically she treated me like i was a three year old and i was throwing a temper tantrum. i was 19 years old. there was nothing i could have gained from that. she left after saying "Well if you won't talk to me, I can't help you." And I was thinking what the heck is wrong with the hospital. Why would they send a social worker in to talk to me when I clearly can't talk. And that social worker was so lucky I couldn't talk or move my arms. I would have punched her in the face and cussed her out. And then I got monitored. Which basically means they left me in the room all alone and ignored me while I was freaking out. But at least they had hooked up an iv with fluids this time. And then that night I got better again. for no apparent reason. and i called my parents and told them what happened and i was audibly freaking out. and my dad yelled at me, because somehow now he thought I was faking the whole thing too. and i hung up on him. for the first time ever. i didn't talk to him for a few months after that.

Greetings, Mr. gate to nowhere.

anyway, the disability resources people at my school had me start going to physical therapy and it was going pretty good-ish. and i hadn't had any seizures besides that one unexplained one which didn't even show up in the brain scan. Okay, good, I did post about the one thing I wanted to share at this point in the story. One time that I went to physical therapy, I had a substitute physical therapist and he thought it would be a good idea to try to shock my leg muscles into working with electricity. Dr. Psycho. Anyway, physical therapy went pretty well and I even started being able to do what I called the Zombie Shuffle by time for Spring Break. which is where i could lift one foot about a half an inch off the ground and step with it then drag my other foot up beside it. It was ridiculous but it was a huge improvement. I went home for spring break. which means my parents drove four hours up to get me. and on the way back my neck started twitching uncontrollably. like a tic in a person with Tourette's syndrome. and it wouldn't stop. and then it got faster and faster. and then i had another seizure. and my mom stopped at a rest stop and had me get out to get some fresh air because she thought it would help. and i had another seizure. i collapsed to the pavement in the parking lot. and she tried to put her leg below my head to keep me from cracking it open. she drove to my brother's apartment in Portland. and i hadn't had any more seizures for a couple of hours. and then i was visiting with my brother and showed him how I could do the zombie shuffle and then i had another seizures. and then i just kept having them nonstop. my dad and brother carried me down two flights of stairs while i was having seizures. and they put me in the van and drove me to the hospital. and i had seizures the whole way there with only about a minute in between them. and i get there and the lady is completely clueless. she sits me in a wheelchair and walks off to fill out paperwork. and then i have another seizure and almost fall headfirst out of the wheelchair. i would have if my dad didn't catch me. she sees what happened and moves me to a bad with iron bars around it, sort of like a giant baby crib. and i keep having seizures and my arms and legs are knocking hard against the metal bars. and it's so painful. and then my brother and my dad try to hold my arms and legs away from the bars so i don't get any broken bones. and then they strap me down and do an mri or cat scan or something. and the seizures aren't showing up again. so they tell me these aren't seizures. they're "tremors". what the difference is i don't know. and they give me anti-seizure medication and it makes the tremors stop. so that doesn't make sense but they're doctors and i'm not.

Umbrellas, you're so high up and colorful!

anyway to wrap this up more or less, i keep taking the medication whenever i have seizures and they stop. by the end of spring break, i can walk again. although very slowly. and i can't lift my feet very high.. but about a month later i'm good as new. i can wlak fine, no more seizures. i'm hacky sacking again. and then two months later i have a seizure when i'm taking a shower in the morning before class. so i take my medicine and i'm fine. but then i start having them every day. usually just one a day. but i have to stop going to class. i tell my professors what's going on. and they are very nice about it. i do a complete withdrawal from my classes. and somehow i still managed to pass one of the classes without going for a month. i don't know how that happened. and then as mysteriously as the seizures started, they stopped. and i haven't had one since. but i'm not going back to school. it's not a good fit for me. plus i have social anxiety so a school with lectures of 400+ students is not my idea of fun. if i was contantly worrying that it would happen again, i wouldn't be able to live my life. i just have to say okay that's done now, hopefully it will never happen again. but if it does i'm prepared. my wheelchair and crutches are in the hall closet. and now i'll be all optimistic and say that I hate that I had to go through that but it did give me a new outlook on life. I never take a single thing for granted anymore, especially not my ability to walk. Oh yeah, and after I regained my ability to walk, I became my school's Hacky Sack club president. but yeah, no superpowers were gained. except I do have abnormally good luck with scratch tickets.

That wasn't so much text, now was it? Nope, of course not.


  1. That is a pretty incredible story. I couldn't even imagine what you must've been going through. I'll take something away from this, and will be less inclined to take my walking for granted. I write a self-help blog at if you'd like to check it out.

  2. Jeez Louise! How frustrating and scary to go through what you've gone diagnosis, people close to you who may not believe you, and the fear that it could happen again at any time. Are you still seeking out specialists to help you understand what's going on?

  3. Emily, I am not still seeing specialists because I don't have any money, and they frown upon it when you can't pay them.

  4. Wow, that sucks. Personally, I think most doctors are dumb-ass's.

    Here's my story, in short form:

    Five years ago, my wife got big spots all over her body, including her legs, arms, stomach, and back. Everything but her face. They gradually went away, but then last year they came back again. Both times, this is coupled with EXTREME fatigue, joints that make it to where it hurts to move, and a couple of other symptoms.

    Every doctor we've been to has tried to act like they what they're doing, but ultimately they just diagnosed her with Lupus, Mono, and get this, JUST BEING FAT. The 'doctor' who told her THAT, if I were there, I would have slapped her. Or at least yelled until security took me away.

    I tell my wife all the time that I don't trust doctors, and I won't trust them until a competent one tells my wife what's wrong with her. And it's gotten worse since she had a c-section in July '10 for our daughter, where my wife almost died.

    Long story short, I hate doctors. And I hope you eventually find out what's wrong.

  5. This is a fascinating and touching story. It also made me feel more sympathy for these poor kids who are suffering from an unexplainable disease with acute-onset Tourette's-like symptoms. A lot of people think they're all just faking it too. I dunno, I can't imagine a dozen people faking symptoms as debilitating as this girl shows in her youtube vlogs.

    I sorta want to kidnap you and bring you to Canada... =(

    Also, have you ever considered taking online or correspondence classes to further your education? Distance learning is becoming more and more available. In fact, if you were interested in, for example, a Computer Science degree, there's an organization that is working to create a dirt-cheap, fully-certified University-level degree program for it in the VERY near future. Last term they offered a completely free course in Artificial Intelligence taught by Stanford professors, which is super-cool. Anyway, something to think about perhaps in the long-term. :)

  6. I hate doctors too. And Ellen, I'm actually not interested in furthering my education anymore. I just want to do what makes me happy, which is art, in any shape or form.

  7. Yeah, not a fan of doctors. Or medicine. I'd rather just sit under a tree in the sun and pray for healing. That is a very difficult experience and that would stink to happen far away from family. So glad you are no longer struggling with this!

  8. I know I'm a little late commenting on this post, but wow! I can understand where you're coming from. I have Multiple Chemical Sensitivity. I've had doctors accuse me of faking, write in my records that I'm depressed or attention seeking or psychologically disturbed. What they don't actually know is that I hold a degree in Clinical Psychology, and I'm finishing up a Masters in the same. When they say I'm malingering, I want to ask them just exactly where they got their degree in Psychology from because wherever it was, they didn't apparently teach them that a diagnosis of malingering involves a monetary or similar gain, which since I'm paying them outrageous fees I'm obviously not getting. Doctors can be so frustrating. If they can't give you a pill, they can't help you.


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