Well, here goes...

This is my first post in something that may or may not be for my eyes only.

What I mean by that is that this is something I've felt I've needed to do for my own sanity for a while now, and I've had blogs before that I've shared with friends, but I think I'll just keep this one to myself.

No posting to Facebook, no asking my friends and family to read, none of that. However, I think I've decided to keep this 'public'....So if you've found me, it is because you are probably going through something similar- and I'd love for you to read my very personal thoughts.

I was diagnosed with Narcolepsy around March of 2009. I was 19. I will be 22 in 12 days.

I am an undiagnosed talker-too-mucher, and as of this moment I feel as though there is so much to cover and I am not quite sure where to start.  Having thought it through for a moment, I'm sure I'll have plenty of time to cover 'the rest' later, so I think beginning with today might be a nice place to start.

I worked today from roughly 11am-3:30pm. At the end of my shift, my managers were having a meeting and asked to speak with me. The managing-partner had told me that he felt like I was doing, verbatim, "a sucky job recently" which was brought out by a situation that happened this past Wednesday during my evening shift. I was written up.

Back-track now.

I saw my Narcolepsy Doctor early this October for my biannual "just making sure you're awake" check in. Since my previous appointment, I had started a new job working at a very nice upscale restaurant. My doctor asked about my work schedule and how I felt in general, and I let her know I was working many double shifts and that it was exhausting me. I had also let her know that I was having a hard time being on time for my lunch shifts (rarely with dinner, but it happens sometimes too). I explained to her that I was almost embarrassed bringing it up to her; sometimes it's hard to see the line where personal responsibility, organization, and initiative clash with having a disorder that you feel every single day.

That being said...deep down, you kind of know....you feel this great conflict inside of you. You know that this means so much to you, and you don't know why you keep failing at doing something right that you care so very much about.

She quickly acknowledged that my issues correlated with my disorder. She was actually surprised that I was working double shifts and said that she strongly advised that I no longer work them. The medicine I take isn't meant to push a person through that many hours of work....not only can my quality of work decline but so will my health-and my safety can be put at risk! (driving home after being so exhausted, for example)

And about being late:
This is a hard one to really explain to people who do not live with this disorder. First of all, I'd like to point out that for the rest of my life, and every single day of it, I will never wake feeling completely rested (no matter how many hours I sleep, what I eat, if I work out or how much I work out, or if I pick up a religion and ask God to grant me this luxury).

I remember what it felt like from when I was younger. When I slept in yesterday, that was not the same.

*Pause for a moment, need to use the lady's room. I just got up, and my left leg was almost entirely numb. Not useless numb, but numb like the feeling in it was fading... and with a little determination (I really had to pee) I could fight my way to the bathroom without it 'giving out'. Success.*

Back to being late. So I'll never wake rested. Ever. But after I take this mostly magical little pill called Provigil (modafinil), some unknown amount of time later I will begin to feel like that morning grogginess is being shaken. Anywhere from 30 mins to 1 1/2 hrs typically.

The problem is, waking up really sucks. If you are reading this and you don't have N, I'm sure you think waking up sucks for you too. Well, it does. They don't make alarm clocks with wheels that power them to run away from you after you've hit snooze too many times just for the narcoleptic public or the hungover. But if you think that's bad, you have no freaking idea.

I have felt that before, too, and what we PWN (peepz w/narc) deal with is more like waking up at the bottom of the ocean realizing you're drowning, and upon realizing how far down you are, just accepting your fate.

What's funny (or not) is that there's this phenomena called hypnogogic hallucinations- mental, physical, sensory, and every other aspect of human experience is altered upon waking or prior to falling asleep.

This could be as subtle as waking up confused and forgetting why your alarm is even going off (while you are FULLY convinced that you "definitely don't have work today") ranging to physically seeing someone who isn't there standing in your room and actually hearing them calling out to you thinking it is real.

So the funny (or not) part is that it's actually totally possible for someone to wake up, honestly feeling frightened and startled, from a dream that they were drowning at the bottom of the ocean- convinced it were actually happening and left with the residual emotion. Or perhaps they'll actually feel the current on their skin and wake their partner in bed, asking them if they can borrow a life jacket to help them swim to the surface faster. They might also realize they are saying something completely nonsensical and "come to", or they might later shake out of it and have no recollection that they even said that.

Again, back to being late. So, not only do I wake up extra tired and not yet medicated (which makes simple tasks like brushing your teeth, getting dressed, and even making something to eat feel like climbing Everest before it kicks in), but sometimes I wake up completely disoriented. My hypnogogic hallucinations just happen when I wake up (or atleast I think), and they aren't really that intense compared to their potential. But how can I get up earlier if I lack the ability to critically think and understand that I really need to get up right now? Nothing in the world matters to my body except Maslow's basic heirarchy requirements, and rightfully so. So while you have the luxury of pushing through your hangover or having stayed up late, I have absolutely no control over my actions. I'd love to push through, I'd get so much more done! Don't you think I would do it if I could?

So sometimes the severity of my lack of time is what sparks something deep down inside of me, maybe anxiety, and that somehow turns the key in my brain's ignition. I call it my "tornado" mode. My family (with whom I still live) knows what this is. I am talented at getting ready in what seems like an impossible amount of time, but I am destroying everything in my path at high speeds like a tornado. But that's just it...there's still never really enough time. So if I take just a LITTLE too long on one thing, or I hit traffic, or someone isn't speeding fast enough in front of me and I can't pass them for whatever reason- I have a very good chance of being late. Not to mention I probably am not always as put together as I'd like to be had I been up a little earlier.

BUT WAIT, this isn't over! There's another cute little symptom, which is a big part of narcolepsy, which is called micro-sleeps. I think people who try to describe these too specifically do not fully understand them. For example, they can be as blatant as nodding out for a few seconds or even a minute; but, and correct me if I'm wrong, they can also be a subtle shut down of your control and perception. I've read someone else describe the term as "auto-pilot" and I consider it brilliant. You are essentially going through the motions, and miraculously you know how to "carry on", but you aren't exactly "there". Like a plane can continue to fly to its destination without the pilot needing to consistently steer. So when I'm putting on my makeup so that I can look presentable (or cover the dark circles under my tired eyes so I don't always look like some drug user or something), I can slip into auto pilot. And all of a sudden, I've been blending my foundation for a minute too long or shaping my eyelashes with more coats of mascara than is really necessary to get the point across. Now I'm late.

The reasons I mention this auto pilot mode is because it's one of the most frustrating. You don't really realize when it's happening, that's the nature of the feeling.

So let's say I got up in time. All advantage is lost when I am programmed to draw a perfectly straight line of eyeliner that was just fine before I got "stuck" concentrating on it. You get pulled into silly things like that. That's why I'm late sometimes for my evening shift too. (When I start getting ready with PLENTLY of time to spare and anticipate being a half hour early and suddenly I'm racing minutes: that isn't a lack of organization. Again, you know when it just doesn't make any sense. Where did the time go?)

So my doctor, who understands all this, wrote me a note. This note stated that I could no longer work doubles and asked that I be granted a flexible "in" time. I'm not asking for the world, but it would be nice to be looked at for the things I do well....not constantly being on the radar because I'm frequently late.

Working in a restaurant, we have to be in a half hour early to set up our tables and do some side work for the evening to run smoothly. Thanks to being a self-trained tornado, I know how to get a lot done in a condensed amount of time. Seeing as my side work affects my coworkers, I don't cut corners like I do at home. I always get it done in time, and I am only ever late at the latest 10 minutes. It's usually more like 5. Regardless, my point is that we are in a half hour early to get that work done...and I get it done. It isn't like we open at that exact time, and had I not been there, would a guest be sitting in my section without a server to take care of them. If asking for my tardiness to be overlooked, given those circumstances, is unreasonable- then I am crazy. And I understand that this is possible, so please, give me the reality check I need if it's appropriate. Am I crazy? Or maybe lazy/spoiled/have a bad work ethic? I'd like to say I am being entirely sarcastic, but I hate to admit that there's part of me that feels so horribly guilty for my shortcomings that I fully accept the possibility that I am in fact delusional and am just rationalizing.

Back to work. My schedule was adjusted. Not completely at first- simply by misunderstanding. I politely (somewhat out of feeling guilty) said "I can't work doubles anymore. But if you guys REALLY need someone, I don't want you to feel like you can't ask me to pick one up every once in a while." What I meant by that, is that if the restaurant was freakishly booked with 500 reservations and a server broke their leg before the shift and another decided to quit that day, that I have every desire to try to push through and help for the better of the restaurant. I had been working multiple doubles a week, I didn't think it was too crazy to pull one off in the future if need be. He understood this as "once a week". So for about 3 more weeks or so, I was still scheduled doubles. I let my managers know in between that it wasn't exactly what I had meant, but they didn't really do much to fix the problem right away and get coverage for those shifts. However, they were pretty good on those days when I reminded them that I was on a double to relieve me for either shift depending on which was busier.

The last one that I was scheduled, I told my managing-partner about this miscommunication with the scheduling manager. It wasn't a big deal to me...a little frustrating but I knew it was an honest mistake. But he reacted as if I was changing what I was asking for or something, and gave me kind of a hard time about it. I brushed it off; if it wasn't going to be an issue anymore there's no reason to get upset at his reaction.

But I was in one of my phases when I was struggling to be on time consistently (it's like the difficulty comes and goes every few weeks or something), and although I had informed my managers of this second request for accommodation (since only one cared to actually read the note that I asked them all to read), they were treating me as if my tardiness had nothing to do with my disorder- essentially, they don't believe me (or think I am making excuses). This is the worst feeling ever, especially because it makes you look like an asshole for "playing that card" and that you really just don't care or have respect for your job. This couldn't be further from the truth. The proof: the fact that I am so distraught that you currently have these words to read. Don't be fooled by the completeness of my sentence structure- I, personally, am in pieces right now.

So they had been warning me, often, that if this continues things won't work out. I am lucky that neither of those times seemed to be the last straw. Once or twice I had been speechless, holding back tears, and able to calmly respond with "I told you, this is because of my disorder." But it's embarrassing. I almost would rather just stay quiet and take the blame- but it eats away at me.

Monday November 21st- I walk in 6 minutes late. The managing-partner is standing at the door. He asks me what time I'm supposed to be there. I respond with 11:00. He then asks, in front of everyone who was standing in the entrance, if I knew what time it currently was. I knew it was a few minutes after, but whether it was 3,4,5,6, or 7 I wasn't exactly sure. So I said 11:04? and then walked towards him to make the conversation a little less of a broadcasted event. He pulls out his phone and shoves it in my face and says,

"No, it is 11:06. You were late for the staff meeting on Saturday and your first day back you are 6 minutes late. That is incomprehensible to me." Verbatim.

Assuming that my managers atleast slightly understood my condition and were aware of the written request from my doctor for a flexible in time, I felt like I was getting blindsided. No one ever formally denied me that request, they just responded in a way that showed they weren't exactly thrilled about it and wanted me to still try to be on time. Obviously I'm trying- I never haven't been!!! And I whether I'm excused or not, I still want to be early/on time!

So somewhat shocked, although still feeling guilty, I responded with,

"That was one of the things my doctor said in the note--"

He then interrupted, getting angry now, and said, "--That's ridiculous, I know damn well that your doctor would never write a note that said you could be late, and you know that too. I'm sending you home, I want you to leave, I'm not talking about this right now."

So I'm standing there, speechless and confused thinking that yeah... my doctor actually did say that.....wtf is happening right now? Is this really happening?
So I finally am able to stutter out,

"I-I can bring in the note and show you, I swear it's written."

Which was extra frustrating since I insisted they all actually READ the note, and they said it wasn't necessary. Well, clearly it was...but at my expense.

And he basically just repeated that he wanted me to leave. So I just kind of shut down, and walked out. I felt like a zombie walking to the parking lot. Like what happened wasn't real or something...my body got this weird numb feeling and I couldn't speak (not that I had anyone to talk to on my drive home) or listen to music. I was just frozen, thinking about it over and over. Wondering if I'd get a call later that day telling me not to come in the next day.

When I got home, I broke down. Cried for hours like I've never cried before. I was hysterical, and my head and my body felt so beaten down and useless...so I just sat on my bed thinking about it some more after I finally stopped crying.

Then I convinced myself I am irresponsible and fuck everything up, and that my narcolepsy is just an easy excuse for my general incapability.

But then I somewhat came to, enough to realize I was being hard on myself, and thought that if it was TRULY because of my narcolepsy, surely more people with my disorder have similar problems.  So I rummaged through the forums on Narcolepsy Network and broke down and cried when I read personal accounts that were just freakishly similar to my own. It was like for the first time throughout my whole diagnosis (and the few years before that I suffered with this), that I felt validated.  It was the most refreshing, freeing feeling ever. I felt like all I had to do was show my managers that it really isn't my fault, with tons of what were essentially case studies to back me up.

So I wrote a short email once more defining narcolepsy in case there were any confusion or misconceptions, explained how it personally affected me, and explained how my requests for accommodation would actually benefit me and why they made sense in general. I even provided a link to a site outlining reasonable accommodations for individuals protected under the ADA which mentioned both schedule modifications and a flexible start time. And then I provided a link to the forums that I had read, that I felt supported the existence of my specific problems. I was so polite, hopeful, apologetic, thankful for the accommodations with doubles, and I made it clear how much it bothered me and how very much I care and respect my job and coworkers and my managing-partner himself! He is a caring and reasonable guy, I never expected him to react this way about all this and since he did, I figured just a little clarification would change his understanding, and thus reaction, completely. I felt so good about writing that email, even though it felt a little awkward to talk about.

The next day, I came in (on time....how I pulled that off can be explained if you keep reading) and he acknowledged that he received my email and pulled me aside to quickly speak with me about it. He extended his hand (which felt so amazing, I was convinced I had gotten through) and I shook it and smiled...until he said,

"Thank you for the email, we are going to work with you with the schedule, no doubles and for example if you can't work any shifts let us know and we won't schedule you....but as far as the being late thing, I don't believe that has anything to do with your "DISEASE", I think that has to do with personal organization and I can't have you be late. It is imperative that you are on time like we expect everyone to be."

That's when my smile kinda turned into a half smile and I tried to hold back a complete meltdown because I was essentially condemned. I know I will be late again. That's the problem. I've tried fighting it, it doesn't affect my health (stress) as badly when I just accept it. So basically, when I am inevitably late again and they've had enough, I'll be fired.

The kind of toll this type of thing has on an individual is incredible. With that acceptance, is the understanding that I will probably never be able to hold a job- at least without problems (unless my boss has narcolepsy or is a neurologist or a saint)

I am just under 5'8" (a tall 5'7" if you prefer). About 3 months ago I weighed just under 140. Let's say varying between 138-141. I have been around this weight for most of my adulthood (once I was fully "developed" and all that). Well, I assure you I haven't shrunk (in height!), but I currently weigh between 125-129. I've lost almost 2 full pant sizes out of nowhere. I haven't weighed this little since middle school! I don't have any appearance issues, and thus eating disorders- I assure you that I'm quite comfortable with myself. Sure I don't mind that I've lost that weight since I don't look freakishly skinny or anything just yet, but I feel like it evaporated or something. I've done nothing but work hard and maybe miss a breakfast here and there not having time for it in the morning. I feel like it is all the stress that is consuming so much of the energy of what I eat. I feel weak.

Adding to that, now that I have been so frightened of being late....it's like I am scared to go to bed in fear of not waking up to my alarm or not waking up early enough. Not only have I not been able to sleep until it's very late thanks to this anxiety, it's like my brain knows how important this is to me that it doesn't really allow me to sleep too deeply. That way, it's easier to wake up and I am less likely to sleep through my alarm.

Sure you can build a house out of cards....and as you stack more cards, it may hold- look really impressive for that matter- but eventually you are going to have to stop adding cards or you'll be left without even a card foundation. Aka, shit's gotta hit the fan. If I'm not being clear, I am speaking in reference to my ability to be on time recently, I've been great at it! But we all know where I'm headed, when my body can't keep up anymore- everything will collapse. And I think this has already begun.

And ladies and gentlemen, this brings us finally back to today. The details of the other night don't matter too much. In a nutshell, the guests had a show to go to and the food took too long for them to eat it before the show so they were forced to leave, and they left upset. What's crazy is that my managing-partner acknowledged that the issues leading to this were not my fault. He was just upset that I didn't let him know that the titanic was sinking closer to when it first scraped the iceberg. Well, in the restaurant business that's open to interpretation, but I digress. I acknowledge that there was probably a good chance to tell him about the issue sooner. Not sure when exactly, and I say this sincerely, but there definitely was a chance there somewhere.

So when I left that night after that whole fiasco went down (the first time a table has EVER! left on me), he had already gone home. It was late. Then I had yesterday off.

So after this shift today, it was his first chance to essentially follow up with me about what happened other than a short conversation we had that night. And even though the other day he knew it really wasn't my fault, and I understand how it doesn't really matter whose fault it was as well, it was as if I was the worst person in the entire world for just bringing it to his attention too late.  What if I did it sooner, might it still have been too late? That woman was one of those rare people that really was set on not being able to be pleased, she had been rude the entire time and I consistently and politely catered to her complaints anyway- I genuinely put my own emotions and judgements aside other than simply making note of her behavior for later review/complaining to my friends about. If your head isn't in the game, it shows. She didn't get to me, but she was definitely a difficult person to please. He experienced this himself, he can turn anyone's night around- I've seen it- but not hers.

So I admitted that I could have done better. I will try my best to get better at letting a manager know if I have an issue before it gets to that point. In that time he could've possibly stalled another table and gotten their food out sooner. It genuinely could've been somewhat fixed and made her somewhat happy,  But I'm not exactly convinced, in her case anyway. (And there are more of her out there, I am aware)

But strangely enough, after I said that the conversation then turned into how I don't do a good job. "I'm frequently late" came up, that was awesome!

My tips are consistently slightly over 20%, I have good sales, and my guests adore me- genuinely. They tell me, I don't ask them or assume. They tell my managers sometimes how I'm a real gem, and a great server. Whatever

But now, I am being bundled into a person who is late and a person who doesn't tell managers about problems and maybe I dye my hair too much or something too (that last part was all me).

They asked me a question about a basic menu item- I didn't know what was going on, I froze up and I was in between Provigil doses...which severely affects my concentration. So I answered very awkwardly. I named some ingredients, and as if I didn't know the rest, but mostly because I wanted to say I had just taken my medicine only a moment ago and that I couldn't think clearly, and because I was nervous and scared, I kinda just cut myself off and gave that kind of "What's going on right now...?" look and said that I had just taken my medicine. It felt so unfair, of course I know what's in that. Really, honestly, I do. I walked away after the meeting with a list in my head of everything I hadn't said, as if I were going to go back and recite the rest.

Either way. The toll this is taking on me is, admittedly, probably affecting my efficiency at this point.  Had I not been up until 4am last night doing absolutely nothing but staring into space and reading more N forums in hopes of calming my nerves because I couldn't get myself to go to sleep, maybe I could have done a better job today at lunch. Well, probably not...only because I did a really phenomenal job today....which was just salt in the wound might I add...I conducted my large section as if it were a graceful orchestra while it seemed like a few of the other servers were channeling "A Night On Bare Mountain".

But on Wednesday, when the devil in woman form came in and destroyed my night by just refusing to leave somewhat okay with having eaten and drank whatever they had as appetizers and drinks for free (not cheap), or maybe acknowledging the risk of eating in a restaurant on a time limit and choosing to still have a complex meal on a busy night.....maybe if I had been less exhausted by this whole saga then I might have been able to make things happen for her. It's possible. Or maybe not for her, but if my performance has been anything "less" recently it's because I am not allowed a flexible start time and it is destroying me from the inside out. My house of cards is shaking and I seem to have lost a few.

If my only mistake (as big as it ended up to be) was not notifying a manager of the kitchen's short comings, since my ticket had a completely reasonable time stamp of when the food was rung in, then I have to say I can't be doing a 'sucky job'. I could have done better, but I didn't cause the problem. I just failed to properly remedy it. But on that note, and forgive me for being bold, but if the kitchen was that far backed up how come a manager didn't make themselves aware of the issue affecting more tables than my own? I am just the unlucky one that had been notified of a time limit when it was too late for me to do anything but try to keep up with their other demands so they were at least well taken care of otherwise.

My managing-partner then concluded the meeting, after he and my other managers beat down on me as if I had been consistently terrible for a while now (yet no one had ever said anything to me about this previously), and without supporting examples other than that ONE night, with saying,

"When you working next?"

I replied saying tomorrow.

He then said, "Ok, well, goodluck."
As in, good luck with better managing my section...because he brought this up as something I have problems with (Which isn't true, that night was honestly unique. Today being solid proof of this fact, I had a larger section...and they KNOW I ran it smoothly)

So I said okay, and as I was getting up, he added, "Go get some sleep." As in, go home and take a nap. But that had nothing to do with anything, other than that I mentioned I just took my medicine and couldn't concentrate on something well. And it was not in a caring tone at all, it was like, I bet you were out partying not giving a shit about this job last night and you're just tired from staying up late. It was rude and condescending, and he was fully aware that it was.

Then I clocked out, already there much later than usual, and as I'm about to leave my other manager said they needed to 'finish up' with me. So I followed them to the office where they wrote me up for failing to manage my section appropriately or something. He said something about how I didn't know what was in that menu item, and rather than just telling him what I didn't mention (because I thought it was obvious that I definitely knew and I just froze up!) I apologized for not being able to think at this time of day. He said "Well, maybe you shouldn't be working in a restaurant." which again was inappropriate because it doesn't interfere with my shifts, even when I was on doubles! It's the time in between shifts when the restaurant isn't open and starts to prepare for dinner.

The lack of understanding and sensitivity anyone has to deal with while trying to maintain a job when you have narcolepsy is outrageous. I think I am going to lose my job. I have to go in tomorrow, but I don't want to. I'm sick of being humiliated and told I'm not good enough when I am more than capable of being fantastic, and have proved that and requested slight adjustments to help me continue to succeed. And honestly, how big of a deal is it for my managers to not even give me a chance with what I've asked for!!! It's like this has turned into discrediting me or something. So if I don't go in, then what? New job, same shit all over again? I'd like to take this time to say I just bought a (much needed) car 3 weeks ago! Perfect timing!!

So I give up. I have no choice but to go in and continue to try to do my best. But at least if something happens, I want it on record that what I'm going through isn't an excuse for something that happens in the future. Here it is. Right here, right now. You can't tell me I haven't written what I wrote today. My suffering isn't made up, or insignificant.

And from what I've read about ADA claims, it doesn't seem like the Supreme Court thinks anything is wrong with me either. I have no desire to kill myself, but this shit just makes you want to curl into a ball and rot/die in a corner somewhere, hidden from PEOPLE and preferably somewhere that's somewhat comfortable so you can get some sleep.

I'd like to end this with a bit of perspective.

Would you hire a blind person for your telemarketing firm but deny them use of the program that reads aloud to them? (TTY I think it's called)
If you provided them with it, would you write them up if the program glitched, and then go on to say they are doing a sucky job because they couldn't work while it was broken?

If you saw a chemo patient walking down the street, would you tell them that you can tell they were being treated because it makes their skin look like shit? Would you tell them that a little tanning could bring a little color back, and that you heard UV rays induce happiness so that would make them feel so much less crappy from the chemo? Why aren't they doing that, perhaps? They are doing nothing to better their suffering and possibly appearance?

Imagine how that would make those individuals feel. This is what you're doing to me, to us. Being uneducated on the matter is excusable, but to refuse to accept it as honest truth backed by scientific data and many many people who are suffering....you should be ASHAMED. I think I am officially damaged enough from this now that I desperately need to see a psychologist. Who knows, maybe they can help me save my job. But just out of curiosity, anyone think this is all being exaggerated because they see it as a way to 'get rid of me' and avoid a possible ADA claim??? Especially since I was written up over this?!

Til' next time.