Being Treated

Yesterday at the doctor’s office, in the middle of listening to one of the reception nurses talking to me about her daughter’s Freshman year audition for No No Nannette while she filled out my paper work for some blood tests, I started weeping.

Not that like, oh, I’m getting a little teary or the solemn “single tear rolling down my cheek artistically”, I’m talking about that disgusting, snot-dripping-down-your-face, gasping for breath weeping.

The kind (and very, very confused) receptionist passed me a tissue and seemed very concerned. Well,I would be too, if a blue-haired weirdo was sobbing all over my counter while I was on hold with MetroLab.

What I wanted to do is make an impassioned speech about how impressed I was with their commitment to patient care, how I had been inspired by the doctor I saw, how I enjoyed being treated like someone with a problem, not a criminal, but the best I could manage in that moment was a very honest “It’s just…just that everyone has been SO NICE TO ME”.

There were three nurses on duty at the time and all three of them exchanged looks like “oh boy, we got another crazy”, but between sobs I managed to choke out something along the lines of “this is the first time anyone’s listened to me in two years and now you want to know about my theatre company? I just— thank you. Thank you so much”.


(And, admittedly, pretty funny).


The specific details of my appointment don’t necessarily matter, but what I felt the need to write about today is about how easy it is to make someone feel good. Or, I suppose, conversely, how easy it is to make them feel like an asshole.

I’m used to the latter.

I think by this point we’ve established how annoying this whole process has been, but today, for, honestly, the first time EVER, I sat down with someone who took the time to listen, who asked questions, who listened to my answers and made jokes and swore a couple of times and high-fived me at the end of the appointment.

I realize it’s kind of ridiculous. “Someone did their job! Extraordinary! My life is changed!”

But it was more than that. It was her attitude. It was her compassion. It was the way she recognized my frustration and my desperation and said, “you know what? It isn’t okay that you feel like that”. It was the way she took the time to explain things, to recommend things, to make me genuinely believe that maybe at the end of all of this, I might start feeling okay.

Oh, and it also turns out that she’s a huge theatre fan, so in between questions about chest pain and headaches, we discussed Oedipus, Titus Andronicus and Antigone.

Not bad, eh?

What I realized is that I’m used to being the strong one. I’m used to seeing doctors where I have to prove how crappy I feel, prove that I’m not some crazy person, prove that I’m normal and not a drug addict and on and on– and this time, for the first time, my doctor was the one who stepped up her game and.

That….well, that was refreshing.

And about the diagnoses– well, there isn’t one. Not yet.

But you know what? That’s okay. Because this time, I have a doctor who is taking the time to make sure she covers all of her bases. I don’t have to beg for a blood test, she ordered 7. When I said that it’s hard for me to sleep, she stopped what we had been talking about and questioned me about that for 15 minutes.

In writing this, it’s difficult for me to accurately get my feelings across. I’m excited. I’m relieved. I’m happy. I’m assured.
I just feel…listened to. I think that’s the biggest thing. My strange and ridiculous list of symptoms wasn’t dismissed, my explanations weren’t ignored and I felt welcome.

I have to go back. Probably a couple of times, but I’m excited to go. I’m not dreading the appointment like I usually do, in fact, I’m looking forward to it.

It’s a nice change.

I’m Sorry that I’m Sorry That I’m Sorry

I am a serial apologizer.

I apologize for everything. Mistakes, failures, missteps– and more often, when I absolutely don’t need to.

It’s strange, really. I never noticed how much I actually do it until Jake pointed out that I apologize, all the time, for things that make absolutely no sense to apologize about, to the point of ridiculousness.

It usually goes something like this:

Jake: Hey, want to go out tonight and do something fun?

Catie: I’m sorry, I’m just really tired and I don’t feel like it. I’m sorry.

Jake: It’s okay, you don’t have to apologize.

Catie: Sorry!

Jake:Really, it’s okay, you don’t have to say you’re sorry. We’ll do something else.

Catie: I’m sorry.


When my back hurts (well, more than it usually does), I apologize. If I need help with something, I apologize. If I feel that I have, in the slightest way put someone out or caused them the smallest inconvenience, I am wracked with the senseless need to apologize.

I don’t get it. Well, I mean, I do. I apologize for things like not wanting to go out or feeling shitty because, in my mind, I am ruining a night’s plans because of my bastard back or something. I feel bad that I have to constantly be aware of  what I’m doing and for how long– yeah, my whole movement disorder thing isn’t usually a big issue, but I hate that it affects my life in any way.

In some ways, I think my apologies are a denial that what I deal with is a “thing”– an apology means that it’s temporary, that it’s something that will clear up in a week and everything will be fine. “I’m sorry we can’t go to the amusement park today, how does next Tuesday sound, because I’ll be fine by then!”…except next Tuesday, I still might start twitching if I ride the wrong roller coaster.

In other cases, it’s simply a way to avoid conflict. I hate yelling. I hate angry confrontation and that sickly grey-cloud-over-my-head-knotted-stomach feeling that happens when I know someone is mad at me– so I immediately apologize. Even if the other person is in the wrong. I back down and apologize because it’s easier. But it never is. Because hurt feelings stay hurt if you don’t talk about them, and an instantaneous apology doesn’t help to fix that part of the problem– it just ends the conversation, and, more often than not, that’s the exact opposite to what I want to happen.

I also realized that I have started apologizing for being honest– I do it all the time, and I realized that I had started apologizing for being honest here– on MY blog that I write and control—but still, apologizing nonetheless to a faceless public who– might be offended that I occasionally break from my whackity-shmackity daily antics and open up about the more serious parts of my life?

The biggest realization I had was that for some reason, I still don’t think I deserve the things I’ve been given.

I don’t think it’s a leftover ‘catholic school kid thing”– the guilt I feel isn’t nessessarily connected to some unseen deity, it’s deeply rooted to my sense of self-worth. I’ve gotten a lot better about self-acceptance, but what I didn’t realize is that self-acceptance isn’t nessessarily the same thing as self-worth. I accept myself for who I am, but that doesn’t mean that my definition of who I am isn’t flawed or skewed by my guilt at not being able to meet the expectations I ascribe to myself.

I’ve never been a person to flaunt my successes. (Well, most of the time). Occasionally, I will get fired up about something and pull out my “look at how successful I am” card, but in daily life, I’m far from a braggart.

I know that I should be proud of what I’ve accomplished, and not apologize for being good at something– the thought of offending someone because I mention my success is almost ridiculous when analyzing it, but in daily conversation, I do it all the time. I’m a good writer– I always have been– but I often apologize for it, and downplay my success.

I don’t feel like I deserve the success of this blog, or my amazing boyfriend or really, much of anything. What have I done, really, to earn this? Most of my successes involve writing of some kind– something that has always come to me so easily– I was born this way, with this skill. I haven’t worked at it, or really done anything to develop it–it’s just always been there. So why should these successes be deserving of a celebration? Instead, I apologize for bringing it up, mentioning that I have an awesome talent and skill that I would love to share with people.

I wish I understood why I feel so guilty about enjoying things or asking things of others. Jake has never hesitated to give me a back-rub when I’ve been particularly hurty, but I always feel a twinge of guilt asking him. I know he’s more than willing and that he doesn’t mind, but in my head, I’ve decided that it must be a horrible inconvenience for him and he’s probably counting the days until he can dump me and find someone who doesn’t ask for back-rubs during movies all the time.

Stupid, right?


I’m sorry.

^^ I just typed that without thinking. Literally. My instinct for sharing something about my life or the way I feel was automatically followed by an apology. It’s strange, looking at it objectively (well, objectively as I can). Sometimes writing on here kind of lays everything out and gives me some perspective.

I don’t know if this is one that I can nessessarily get a huge amount of perspective on, but I do know that it’s something I want to look in to. The first step, I suppose, is trying NOT to apologize all the time for things.

I don’t have an end for this one. Not yet. I don’t want to make any bold promises about a magical shift in attitude, nor do I want to act like everything is fixed.

Sometimes, I just like to type things out and see what happens.




The Best Question I’ve Ever Been Asked

Today I spoke to a group of students at Palmer and I feel like I did pretty well. People laughed, as they tend to do when you let me ramble in front of a crowd, and I also managed to wake up at 6:50AM which is an accomplishment in itself.

After my brilliant performance (best moments include “Hold on, I forget what happens to me next” and “Crap, my phone is doing something weird, hold on”), I opened the floor to questions.

There were a lot of good ones, and it was a GREAT audience, but one question blew me away.

Someone asked me “You’ve talked a lot about what you lost because of your condition, but what have you gained?”


My initial response was “About 40 pounds”. (I’M HILARIOUS).

But then, I started thinking.

What have I gained?

Weight, yes, but as I started considering, I was–and still am– blow away by what *good* this has brought me in my life.

With the weight came a begrudging acceptance that I won’t always look how I want, but who I am and what I believe in is not nessessarily related to my jeans size– and that was one of the biggest things I think I needed in my life.

I gained a support system, a group of friends willing to go out of their way to carry things or take breaks and do their best to accommodate me.

I gained the ability to discern a true friend from someone just along for the ride, and while it was difficult for me to come to terms with the fact that not everyone around me was actually my friend, I gained a desire to show the people who were genuinely concerned my appreciation.

I gained the ability to balance a schedule made even more busy with doctors appointments and lengthy tests.

I gained the ability to drive in big city traffic without (much) trepidation.

I gained a relationship built on compassion and emotional support and a boyfriend who is beyond incredible. I started twitching literally 4 days after we officially started dating. Most people would bail on that, but he made it his prerogative to be there for me, even when I was shitty and angry and pissy or doped up out of my mind. He stayed. And that means the world to me.

I gained the ability to relish the small moments of victory—from being able to ride the rides at the Shady Carnival by the mall to finally being able to eat soup again without spilling– inconsequential for most, awesome for me.

I gained a talent for getting people to immediately see who I am based on my words and actions, not my physical appearance.

I gained the knowledge that not everyone has a medical problem you can see (or even happens 24/7) and became less judgmental because of it.

I gained the ability to put on eyeliner regardless of how shaky my hand may be that day.

I gained the willpower to ask for help and to admit that I’ve taken on too much.

I gained patience– for not being able to do things I wanted, for not being able to carry things or help people when I wanted to, for having to plan around my stupid twitch instead of just jumping in. Maybe waiting a day might be frustrating, but it is better than twitching for a week because of it.

I gained a sense of time– maybe I can’t do something right now, but that doesn’t mean that in 20 minutes or 20 seconds I still won’t be able to.

I gained the confidence to take things at my own pace. I used to be able to pull myself up a set of Silks and flip around like a crazy person and then go and run 6 miles. I think right now I can do like…4 push ups.  I miss that strength and that stamina, but I know that I have to take things slowly and rebuild myself little by little, not all in one massive swoop.

I gained a better ability to sit still. (Well, you know). Sometimes all I can do is sit and read or watch tv– but Jake taught me to identify birds and I started writing again, so the stillness became a relaxing thing instead of something I dreaded.

I learned about myself– what I am capable of, what I am afraid of and how that affects me. I learned to be strong when I needed to be and I learned to let myself cry if I needed to.

I could go on and on– but I don’t think I need to. I just feel so…empowered after thinking about it and really examining things. I also feel lucky.

Lucky to have the chances I’ve had, to have friends like I do, to have someone like Jake for my adventuring partner– it’s a good feeling.

Today was a good day.




I’m Famous On The Internet

**Caution, this entry gets a little real***

I’ve jokingly said before that I’m “famous on the internet”. Yeah, I say it kind of facetiously, but for a small community of people, I actually am kind of well known, and a lot of people manage to stumble on the things I’ve written and filmed regarding one area of my life I try desperately to keep separate from my day-to-day personal life.

That’s right kids, tonight we’re going to talk about my movement disorder.

Tonight I checked my email (like I do), and, like I often do, I found a notification from Youtube telling me that someone had commented on one of my videos.

And it got to me.

I got an email from a girl named Katie asking me how the hell she is supposed to live with a movement disorder for the rest of her life. She went on to explain how bad the pain is, how frustrating it is to not be able to do the things she wants to do, how she’s lost friends, how basically, this thing has ruined her life.

She ended it with a question. “After everything you’ve been through,  do you think you can ever be happy?”

Two years ago, I went through…well, a lot. I don’t like to make this blog about my woes and miseries (and I feel like medical information borders on the “overshare” category,) but basically, I fell and hit my back. And when I fell, something happened to my back that basically set in motion a constant twitch… thing (and a bunch of other crap that I don’t feel like talking about right now) that I dealt with for almost a year and a half. After months and months and months of medical testing and literally being a case study, they determined that I had “a movement disorder”.

That was it, that was all. After all of the testing, and the constant trips to specialists and drugs and procedures and 6 inch needles and everything, they said “oh, it’s just…a thing you deal with” and went on their merry way. Not only that, but double bonus: while there are something like 27 specifically named movement disorders that exist, my particular set of symptoms are so distinct and unique to my case that there isn’t even technically a movement disorder that describes what I have. So the nice specialists patted me on the head and sent me away, and kind of left me on my own to figure shit out.

That year and a point five (or so) was…I don’t talk about what happened a lot. Jake was there, and he knows, and some of my close friends know exactly how roughballs it was, but it was…awful. I was, frankly, hopeless and terrified for about 98% of the time, and the other 2% I spent drugged out of my mind. It was a shitty fucking way to live.

I could talk about how fucking shitty that experience was for me, and how that year and a half was one of the most painful things that’s ever happened to me, but somehow, (and I know this sounds cheesy) against everything the doctors told me, I started getting better.

During the whole ordeal, I started posting little video diary things on Youtube. I don’t know why. Part of me wanted an outlet, part of me saw the videos of other people struggling with the same types of things and wanted to reach out to them, and part of me just wanted validation that I wasn’t crazy.

That was the hardest part of the entire thing. For nearly two years, I questioned my own sanity (and had it questioned by a number of registered medical professionals). Why was this happening? Why couldn’t I make it stop? Some days it was better than others, but the stares and the gossip and the general shitty-ness of the situation became so much that I think it made things a lot worse.

And then the comments started coming in. From all over the world, from all different types of people from all different walks of life, people started sending me comments of support and hope after watching the videos. I’m not to proud to admit that some days, they were what kept me going.

I put up a good front. I’m really, really good at that. In fact, that’s one of the biggest things I learned that year. Was just to keep smiling. And it became so hard to break down that barrier and admit that I was feeling crappy or needed help that my built in response because “everything’s fine”– and so I started pushing people away.

And that was shitty of me.

But anyway, people started watching my videos. In them, I was very candid and open about what I was going through. There is also actual film evidence that I cry. They got a lot of views A LOT. I’m not viral or anything, and I don’t think I’m going to be a millionaire because of them, but I left them up.

Life moved on, and I learned to deal with things.

The twitching itself calmed down, and I learned how to manage my daily existence so I can eat soup (get it? because I twitch…never mind)… I learned what sets it off, how to make it NOT start twitching, what to do when I start, and, basically, started living very carefully. It sucks sometimes, and (god, again with the cliches) some days are better than others, but all in all, I improved dramatically.

Since then, I’ve been featured on a number of blogs and a podcast or two specifically marketed towards families of people living with movement disorders. But I was the “success story”. I was–am– an anomaly. Sure, it’s not totally “gone”. It’s something I deal with every day, and it’s something that I have taught myself to be aware of. I’ve had to give things up. But to the people who contact me, I’m the girl that got better from something you’re not supposed to be able to get better from.

Movement disorders aren’t supposed to just stop. They don’t disappear overnight. But mine…kind of did.

So I stopped making videos. Part of it was I just got busy. Part of it was I thought to myself “Well, you don’t LOOK like you have a disease anymore, why post?” The biggest reason though, goes back to the comments. I just didn’t have anything to say anymore.

Recently, though, that’s really started making me feel guilty. People like Katie make me feel guilty.

Four or five times a week, I will get a desperate plea for help from someone going through something similar, begging me to give them advice and asking me if I have ANY clue what could be wrong with them, if I can direct them to a doctor or some type of therapy or treatment or whatever– and while I’ve made it my rule that I ALWAYS answer every message with as much information and as much positivity I can muster, it’s so hard to read those messages, especially right now.

Because I am happy. I don’t know what the future holds– I am happy and content, but I also live with the knowledge that any day things could go exactly back to the way they were before– and I’m also content in the life I’ve built that no matter what happens– twitch or no twitch, the people around me love me and support me, and that’s an absolutely amazing feeling.  I’m fucking lucky, and I know it. I have no words to describe the gratitude I feel when I think of the amazing support system that I have to rely on, every day, no matter how shitty things get.

However, I constantly hear stories of people who have been rejected by their friends or family, made fun of, and are desperate for an answer– especially on how I made it stop. I know what it’s like to be in constant pain and to be so scared and confused and just– desperate– that you’ll email some stranger half a world away with the hope that maybe…MAYBE they’ll be the one who says the right thing or gives the right lead. I did the same thing.

And now, people are reaching out to me.

And I don’t have the answer. I just don’t know.

It’s stupid, but I feel guilty because I got better.

I know it’s not my burden to bear and that I can’t solve the world’s problems.

But it’s just so hard because I remember what that feels like, that feeling of grasping at whispers and grains of sand and the absolutely hopeless feeling of getting a response back of “we don’t know” or “I can’t help you”.

Sometimes it just gets to be a lot. And it makes me sad.  And for people like Katie, there’s not much I can say except “it might get better” like the world’s tritest dick.

Sometimes, being famous on the internet sucks.

I bless the rains down in Africa…

Okay, that has nothing to do with this post. But it’s raining outside, and I’ve been listening to that song on a loop because it’s the only CD i have in my car that I can tolerate.


So. A story for this rainy evening.

There once was a girl. Rather average looking, rather smart, short hair, lovely smile and pretty eyes. Grey, like the sea. And she wanted, more than anything else in the world, to act. Oh, to be on stage. To play the greatest queens and lowest peasants–to fall in love again and again and again, every time it different and unique–to have a lifetime of listening to orchestras warming up, waiting for the curtain—yes, it would seem that acting was the life for her. And yet, she had another love–writing. Oh, the stories she would tell. Tales of Great Adventures and pirates and dragons and princes and kings and forbidden loves–her mind constantly swirled with people and worlds, and it was all she could do to get them on the page. She would be a writer, she was determined.

She had such hope for this life, and believed more in the power of hope, perhaps, than the power of acting or writing combined. Hope, it seemed served as that constant reminder that things would always turn out right in the end.

It is funny how so often our passions lead to our demise. Take, for example, Shakespeare. Never mind, that is a different tale entirely. But yes, this girl–her passion was acting, and it would lead, literally, to her downfall.

It came to pass that she was chosen to play, per her usual fantasy, a great queen. How happy this girl was! Finally, a chance to shine–and then one day, during a particularly difficult rehearsal, the girl tripped, fell and landed on her back. It hurt, as most falls do, but she thought nothing of it.

The next morning she awoke quite early, with searing pain down her spine. What was this? An injury? Probably just something silly from rehearsal. She thought nothing of it and went about her day. That night, as she lay in bed, she began, quite suddenly, to shake. How odd. Just as quickly as the shaking began, it began to grow in intensity until she was wracked with spasms that caused her quite a lot of pain. And so, like most people do when they have odd things happen to them, she went to the hospital.

At the hospital, the doctor looked her over, determined her injury a “sports related hurt” and gave her some vicodin and a pat on the head. She went home, and still her spasms remained.

The next morning she awoke (still shaking) and went to go see her family doctor. He, too, declared her injury “sports related” and sent her on her way. She went home, and still her spasms remained.

For three days she shook like this, every day hiding them as best she could in order to save herself from embarrassment. She would attend her rehearsals–by day, a great queen, and by night, a pathetic wretch, sobbing on the floor in agony as her helpless boyfriend watched on, but still she hoped.

Finally, her boyfriend had had enough of this and took her to his doctor, hoping for more answers. Again she was told it was just a “sports injury” and sent on her way, this time with an x-ray bill to boot.

For another week she shook, the same story being repeated every morning. She went to three chiropractors and an allergy doctor and even a witch doctor straight out of a hippie film–and no one knew what to make of these strange spasms that still caused her to shake and twitch, but still she hoped that soon, soon everything would be okay.

During that same week, the girl found that her hands began to freeze into stiff claws that would last for sometimes hours at a time. The girl was horrified and embarrassed, and became exceptionally adept at hiding them. However there was one who could spot them and sometimes fix them, and so the girl found herself relying on her boyfriend even more, this time to massage her ugly hands back to normal. It was awful–but still, she hoped.

Next her journey took her to her neurologist’s office, where he poked and prodded and signed her up for still more tests–but still she shook. The next week she returned to take the tests, most of which were very unpleasant. EEG’s, MRI’s, CAT-Scans…it seemed that every letter of the alphabet was being used to treat her, but still she had no answers.

She returned to the first doctors she had seen, twice more each, and neither could offer her any answers–only medication that dulled her senses and put her to sleep for hours on end, only to awaken again to more pain and more twitching. Her pillows (and, dare I say, her boyfriend’s pajamas, grew suspiciously wet with tears every night, but the girl would not admit how desperately frightened and scared she was for all the world, for she still clung desperately to that little bit of hope.

There was one glorious evening when the girl stopped twitching for almost 7 minutes on the ride home from rehearsal. She bounded in the door and jumped in the shower, only to begin twitching again. She emerged, soaking wet and shaking and fell into her boyfriend’s arms, sobbing harder than she ever had before. She had had such hope.

Because it seemed that doctors in town weren’t getting any closer,the girl decided to go to the famed Neurology Clinic at the University of Iowa. She drove through the sunrise and arrived, hoping for answers. Instead, she was seen by yet another doctor, poked, prodded and questioned–and told that she would have to return later, to see another doctor, who was a renowned specialist and would be able to tell her what was wrong.

Still more time went by, and still the girl shook and twitched. Her show went up perfectly without a hitch, and the last good thing the girl had to hold onto ended. Now it was just her and her pain and her stubborn refusal to appear needy. No matter how bad the pain got, she vowed, she would not show it. No one needed to know how bad she felt, for the world was ugly enough already, complaining wasn’t needed. Besides, she was going to beat this. Despite everything–despite the pain and shaking and embarrassment and stress–she was going to get better. She still had hope.

All week she looked forward to her appointment at Iowa City, for this was going to be the day that she finally found out what was wrong with her and began to find ways to treat it. She had been shaking continuously for nigh on two months now, and she was getting awfully tired of it, but still she hoped.

Every so often she would get a brief reprieve, no more than a few minutes, just enough to garner hope enough that maybe, this time, it would finally stop for good. It never did.

There had even been a girl in the newspaper, locally, who had exhibited some similar symptoms to the girls. The girl eagerly contacted her, only to jealously discover that the girl in the newspaper’s symptoms were much lesser and far less life-altering than what our subject was experiencing.

Finally the day of her next appointment arrived and again she drove through the sunrise to Iowa City, this time to be poked and prodded and questioned by yet another doctor. He drew blood and berated her with questions…and then sent her on her way, only to return later, in order to do more testing. He didn’t know.

It seemed now that no one knew. She had seen the top doctors and they were clueless.  She was given little more than a reassurance that the doctors would “probably be able to figure it out, someday”.

So now, not only was the girl still in constant pain, but now she had failed out of a semester of college and become a practical recluse, forced to abandon her  dream of becoming an actress—for who was going to hire an actress who couldn’t even stand up straight? She was content with this, for she still had her writing, but her useless hands often made it difficult to write, slowing her enough to frustrate and infuriate her at the doctors, the hospitals, her body that so defied every move she made and even at herself, for not being able to just stop.

There is a sense of guilt there, too. She feels awful having to ask for help, even worse complaining to people about how bad she feels, so instead she takes it out on her helpless website. She has a wonderful life, great friends and family and a man she is madly in love with, even a budding career as a writer. Some might say that if it were not for the shaking, her life would be perfect.

For now, the girl sits, still shaking, waiting for July, when the doctor’s office so generously managed to “squeeze her in” for a 6 hour test that may or may not determine what it is, and whether or not they can do anything about it. The pain is normal now, the hands an annoyance, and the spasms a part of daily life. Every morning the girl wakes up and takes a shower, and then falls back into bed, too exhausted to move. Slowly she gets up her energy and manages to paste a smile on and get through four or five hours before she collapses back into bed. The longer she waits, the more she shakes, until she can barely stand. Sometimes she falls, or trips, or spills her drinks, but still she refuses to ask for help from anyone but her most trusted of friends, for she is proud and awfully stubborn. Most nights she can’t sleep, so she stays up listening to the rain and staring out the window, thinking of the great stories she’d like to and adventures she wants to go on, but for now it would seem she is stuck here, shaking, instead.

For the first time in her life, it would seem that the girl has given up hope.

Not that I have any personal connection to this story.

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