10 replies to this topic

[narcoleptic_deaf_teacher]

I didn't have problems as a teacher, until I moved to this little hick town in north florida. Before, actually before I was even diagnosed, my fellow teachers knew that I was a little different. However, we were a team, and close.

At meetings, it wouldn't take 10 minutes before I was out like a light. BUT, because I wasn't really asleep, I could remember EVERYTHING that happened at the meeting. I also remember falling asleep between two spelling words when giving a spelling test. My kids were so used to me, that they just gently woke me up, and didn't think anything of it.

When we had free reading time in the hallway (I was on the third floor, which was never visited....so I didn't get caught by any bosses) It wouldn't take any time at all before I was asleep. the kids were great. The other teachers would throw balls of paper at me. It was just a big "funny-ha-ha". I was going through a divorce at the time, so we just marked it up as my response to that stress.

When things would get really bad, I would bring my class into another teachers room, and sleep in her closet.

I have no idea how I lived through the drive to school and back....I feel asleep constantly.


Then, I moved here to North Florida, and my time in hell began.
I'm not only narcoleptic, I'm also profoundly hearing empaired. I came to the county hired to be a school based technology coordinator, and was very good at what I did. It was active, and moving around all the time, did help keep me awake. i didn't know even yet, that I had narcolepsy.

By this time I had severe sleep apnea. The sleep study showed that I had narcolepsy as well. Like others, i didn't understand what it really was. I just remembered the funny parts in "Juice Biggallo" where the narcoleptic girl threw herself down the bowling alley, and thought THAT was narcolepsy.

It didn't take me long to put two and two together. I had been having cataplexy attacks since high school, and couldn't be diagnosed. (so long ago, they didn't understand this desease). I remember having night terrors, and sleep paralysis, and having problems staying awake at appropriate times. I remember going to college, and having times when my handwriting would go really weird, because I was asleep and just going through the process automatically.

If finally REALLY became real, when I almost had an accident at an intersection, because I was upset and late that morning. It was a real cataplexy attack, and the first I really, really recognized, before going back and remembering all the other times when I didn't recognize it.

Well, the principle that hired me loved me to death. She had me put in wireless networks for the 5th grade, and repair computers, and basically broke every rule in this "20 year behind the times, good 'ol boy county." She was fired, I was blackballed.

It didnt help that I am profoundly deaf. My NEW principal hated me right from the beginning, and it was her desire to run me out of technology. It takes three years to fire a teacher. So, I endured two years of false HORRIBLE evaluations, being taken off as head of the tech committee, and finally taken OFF the tech committe, and I could read the writing on the wall. She was trying to get rid of me. I'm an oddball. I fall asleep at meetings, I don't hear everything that is said to me. I don't even hear fire alarms sometimes (before I got my hearing aids)

So here I have two majors against me
deaf = stupid to people that don't know better
Narcolepsy = lazy or someone who doesn't follow through to people that don't know better, or just don't care.


YES, she knows -- and knew --- about both conditions. I was driven out of technology, and was reassigned as a special reading teacher working with the worse of the worse readers. This is a job I had not done in 13 years. (the 13 years I spent blissfully in technology). This was also a position she expected me to fail miserably at, as we have been a "C" school for 5 straight years, and this year the blame would fall on ME. What mrs.!@#$%^ didn't know, was I used to work at Sylvan Learning Center and am an EXCELLENT reading teacher. Not only did she not have a foot to stand on, because I had data to support my effectiveness; but, our schools grade went from a "C" to and "A+" as our grade was always brought down by those 30 or so students who never learned to read, and didn't have anyone to help them one on one. That data saved my job.


However, it is not saving the way people think of me. My narcolepsy is getting worse. Provigal is getting me safely to work, but the drive home is a bit hairy. (I live 13 miles from work) NOW, my Doctor is telling me that I have to have NAPS during the day......OMG.....I can hear the lead baloon bounding down the hall, when I tell her that one. I can also see me being forced to go on disabiity, which would make it necessary for me to get rid of all my horses just to survive, and they are my sanity. I wouldn't be able to live on disability.

I know I shouldn't care what people think of me, but I DO!!!! I hate being thought of as stupid, slow, clumbsy.....you name it. I CAN read lips. So add being deaf to being narcoleptic, and you have a person who just doesn't fit in society.

I could use help, ANY help. Bet you can guess, I have depression problems, too.

Thanks
The Deaf-Narcoleptic-teacher

[sarahlue]

I can relate to how you feel. Fortunately, I have a wonderful principal at the school I teach at. Not everyone knows I have narcolepsy but my principals do and at the end of each year I remind them that I MUST have an afternoon conference for "napping" time if I need it. So far, every year they arrange the schedule and I have an afternoon conference - which has been a life saver. I still get sleeping in the mornings but I find walking around the classroom helps and it is great when the principal stops by and sees me physically monitoring the room. The meetings are the worst for me too. I am constantly falling asleep and then my coworkers will joke about how lethargic I am. It's hard but I know I do a good job teaching my students, as do you. That's what you have to just keep remembering. I do feel for you being a reading instructor though - that would be the HARDEST job to have with narcolepsy! I don't have any real advice to give you. I just want you to know that there are others out there in the same sort of situation and it's not always fun. Remember, just think about the kids who's lives you are improving! Also, you might talk to your union rep about this situation. Hang in there and I will keep you in my thoughts!
Sarahlue

[sleepynet]

I didn't have problems as a teacher, until I moved to this little hick town in north florida. Before, actually before I was even diagnosed, my fellow teachers knew that I was a little different. However, we were a team, and close.

At meetings, it wouldn't take 10 minutes before I was out like a light. BUT, because I wasn't really asleep, I could remember EVERYTHING that happened at the meeting. I also remember falling asleep between two spelling words when giving a spelling test. My kids were so used to me, that they just gently woke me up, and didn't think anything of it.

When we had free reading time in the hallway (I was on the third floor, which was never visited....so I didn't get caught by any bosses) It wouldn't take any time at all before I was asleep. the kids were great. The other teachers would throw balls of paper at me. It was just a big "funny-ha-ha". I was going through a divorce at the time, so we just marked it up as my response to that stress.

When things would get really bad, I would bring my class into another teachers room, and sleep in her closet.

I have no idea how I lived through the drive to school and back....I feel asleep constantly.


Then, I moved here to North Florida, and my time in hell began.
I'm not only narcoleptic, I'm also profoundly hearing empaired. I came to the county hired to be a school based technology coordinator, and was very good at what I did. It was active, and moving around all the time, did help keep me awake. i didn't know even yet, that I had narcolepsy.

By this time I had severe sleep apnea. The sleep study showed that I had narcolepsy as well. Like others, i didn't understand what it really was. I just remembered the funny parts in "Juice Biggallo" where the narcoleptic girl threw herself down the bowling alley, and thought THAT was narcolepsy.

It didn't take me long to put two and two together. I had been having cataplexy attacks since high school, and couldn't be diagnosed. (so long ago, they didn't understand this desease). I remember having night terrors, and sleep paralysis, and having problems staying awake at appropriate times. I remember going to college, and having times when my handwriting would go really weird, because I was asleep and just going through the process automatically.

If finally REALLY became real, when I almost had an accident at an intersection, because I was upset and late that morning. It was a real cataplexy attack, and the first I really, really recognized, before going back and remembering all the other times when I didn't recognize it.

Well, the principle that hired me loved me to death. She had me put in wireless networks for the 5th grade, and repair computers, and basically broke every rule in this "20 year behind the times, good 'ol boy county." She was fired, I was blackballed.

It didnt help that I am profoundly deaf. My NEW principal hated me right from the beginning, and it was her desire to run me out of technology. It takes three years to fire a teacher. So, I endured two years of false HORRIBLE evaluations, being taken off as head of the tech committee, and finally taken OFF the tech committe, and I could read the writing on the wall. She was trying to get rid of me. I'm an oddball. I fall asleep at meetings, I don't hear everything that is said to me. I don't even hear fire alarms sometimes (before I got my hearing aids)

So here I have two majors against me
deaf = stupid to people that don't know better
Narcolepsy = lazy or someone who doesn't follow through to people that don't know better, or just don't care.


YES, she knows -- and knew --- about both conditions. I was driven out of technology, and was reassigned as a special reading teacher working with the worse of the worse readers. This is a job I had not done in 13 years. (the 13 years I spent blissfully in technology). This was also a position she expected me to fail miserably at, as we have been a "C" school for 5 straight years, and this year the blame would fall on ME. What mrs.!@#$%^ didn't know, was I used to work at Sylvan Learning Center and am an EXCELLENT reading teacher. Not only did she not have a foot to stand on, because I had data to support my effectiveness; but, our schools grade went from a "C" to and "A+" as our grade was always brought down by those 30 or so students who never learned to read, and didn't have anyone to help them one on one. That data saved my job.


However, it is not saving the way people think of me. My narcolepsy is getting worse. Provigal is getting me safely to work, but the drive home is a bit hairy. (I live 13 miles from work) NOW, my Doctor is telling me that I have to have NAPS during the day......OMG.....I can hear the lead baloon bounding down the hall, when I tell her that one. I can also see me being forced to go on disabiity, which would make it necessary for me to get rid of all my horses just to survive, and they are my sanity. I wouldn't be able to live on disability.

I know I shouldn't care what people think of me, but I DO!!!! I hate being thought of as stupid, slow, clumbsy.....you name it. I CAN read lips. So add being deaf to being narcoleptic, and you have a person who just doesn't fit in society.

I could use help, ANY help. Bet you can guess, I have depression problems, too.

Thanks
The Deaf-Narcoleptic-teacher

[sleepynet]

well I am sad to say your job sounds much better than mine....I work in a welfare office and they do not like people with disabilities or work modification papers. they have constantly harassed me and I really dont know how long I can hold on...they were still mad from 8 years ago when they were trying to fire me for nothing and I filed a complaint on them with the eeoc office....they give me extra work all the time that the others dont have to do and if I complain they really get mad....they say if they see anyone at my desk I am visiting instead of working and they dont even know if the conversation is job related....but then I see them laughing and talking to other clerks in my face. They stand around having conversation that are not about the job at all...they tell me they will be watching me and my supervisor peeps at me all the time. I am so sick of them I was sitting at work on 9/05/08 trying to hold back the tears....my narcoleply gets worse in the situation i am placed in........very depressed................sleepynet

[greatbig47]

Wow, SleepyNet...That's a long time to be at a job AND depressed. By your post, you've been there for at least 8 years, right?

You say you don't know how much longer you can hold-on, but you have! Give yourself some credit for that! If you can hold on even just a fraction as long as you already have, I have no doubt you could find something better that makes you a happier you.

Consider spending some time expecting and imagining a better job...and finding a better job. If you can last as long as you have at a job you are not happy with, imagine how long you'd last at a job you LOVE!

Oh, and about your present co-workers...Don't let the ignorance get you down. It's okay to go in to work with a smile on your face if you know you're going to find a better job soon. Nothing says revenge quite like handing in a 2 week notice knowing your moving up.

imagine it...seek it...get it. The first step is thinking about what you really want.

You can do it!

-Stu

well I am sad to say your job sounds much better than mine....I work in a welfare office and they do not like people with disabilities or work modification papers. they have constantly harassed me and I really dont know how long I can hold on...they were still mad from 8 years ago when they were trying to fire me for nothing and I filed a complaint on them with the eeoc office....they give me extra work all the time that the others dont have to do and if I complain they really get mad....they say if they see anyone at my desk I am visiting instead of working and they dont even know if the conversation is job related....but then I see them laughing and talking to other clerks in my face. They stand around having conversation that are not about the job at all...they tell me they will be watching me and my supervisor peeps at me all the time. I am so sick of them I was sitting at work on 9/05/08 trying to hold back the tears....my narcoleply gets worse in the situation i am placed in........very depressed................sleepynet

[denirosdoll]

don't forget you are protected by the ADA, this means you can request reasonable adjustments, one of which can certainly be that you request a scheduled nap-time in the afternoon.

also you say provigil helps you drive in morning but not in afternoon, i have been advised to take provigil morning and lunchtime, do you do that? would that help you drive home?

also i have seen someone suggest taking provigil before afternoon nap, it doesn't prevent you sleeping and should be working to keep you alert by the time you wake from your nap.

the afternoon nap thing doesn't work for me unfortunately, if i sleep it has to be for a minimum 90 minutes, but i've seen others make the suggestions above

[mtc]

I have been lucky to be able to be self employed. I fall asleep every two hours and it is still difficult to work. I could NEVER work where I could not fall asleep!! It's impossible for me to stay awake!!

[Wedge]

You have rights and the school system has to have professionals within their working environment. I hate to say this but if they really mess with you then just sue them.... i am against that type of thing but sometimes you gotta fight back.


I work as an EMT and thankfully i sleep whenever im not on a call.. and when i am on a call my adrenaline is running so i dont fall asleep.. this is my part time job in relation to school so i find my ways around it....i do have to leave the military though because of cataplexy ... which rarely happens for me. It troubles me to see these stories of how people are treated for having narcolepsy.. its like no one will take the time to understand. Honestly, and maybe this is just me.. if a job/teacher/anyone decided to get onto me for being narcoleptic i would probably rip them a new one. That gets you fired but hey..

[Bafflegab]

I hate to have to rain on everyone's parade, but the ADA is practically useless when it comes to protecting your legal rights at work.

There are a number of reasons for this: first, President Bush gutted the EEOC, who was all ready underfunded and short of staff (Bush also had a director who was himself sued--successfully--by his employers for job discrimination; second, the courts dismiss in favor of the employer over 90 percent of the complaints they receive (the flip side of that is that the cases who are accepted for appeal usually end in favor of the employee, but this is much more difficult and expensive than you probably think); third, because going to court is so expensive, most employers will settle for a couple thousand dollars without admitting any violations (employees who have attorneys usually settle out of court for roughly $8,000), which is fine except that the person who complained is still usually without a job and the employer continues on as before (ignoring their duty to adhere to the law); fourth, unless your case is a clear violation of the law, finding a good attorney who will take your case isn't easy--and costs a retainer fee that can be anywhere from $500-$5,000).

If you having troubles with your employer that can't be worked out and you feel you have to make an official complaint, you may want to investigate the National Labor Relations Board (http://www.nlrb.gov/), instead of the EEOC. The bureaucracy seems to be much less of problem with the NLRB than the EEOC (I have personal experience with both) and common sense seems to rule. The EEOC is staffed by a lot of really good people who are well intentioned, and devoted to fairness in the labor market, but they are hamstrung by laws that favor corporations and judges that seem to have a knee-jerk reaction to throw out every complaint (my hunch is that this is done because the court is chock full of truly frivolous law suits, and it's just assumed that people with valid complaints will hire an attorney and appeal--which also explains the high rate of success complainants have in the appeal stage).

My advice to anyone who is having trouble at work and doesn't think they will be supported in their requests is to first start a work journal. Write in it every day and strive to be as assiduous as possible and be detailed with dates, times, names, actions, results, requests, responses, treatment of staff by management--not just toward you but everyone else, and keep focused on the job (more on this in a little bit). Many law suits have been won on the strength of the contents of the journal alone. Second, be a model employee. Don't give your employer any reason to find fault with your personal and professional habits. Third, always appear to have a positive attitude. And fourth, always remember that the ADA and NLRB are there to protect your rights at work. They can't protect you if your complaints aren't absolutely and solely connected to your ability to do your job in the work place. The law isn't concerned with your commute or personal life.

The onus is on the complainant to prove conclusively that you are being discriminated against strictly because of your disability. The fact that you aren't liked and consequently treated badly because of your disability doesn't hold any weight, unless you can prove conclusively that the treatment you are receiving is detrimental to your ability to do your job and that you are receiving the bad treatment solely because of your disability.

The bottom line is that stacks are weighed seriously against the complainant (the employee filing the complaint). The employer holds almost all the cards and if you file a complaint you will most likely lose.

But, having said that, I want to assure you that it is possible to win. I once worked for the Navy as civilian and filed a complaint with the NLRB. Two days later I was fired. Two weeks later the judge personally told the Navy they had two days to settle the case or risk going to court where they would most assuredly lose much more than anything I'd probably settle for. In the end, I lost a job I liked and was out of work for almost a year, but I won six months of back pay and my record was cleaned up to show that I wasn't fired, but left on my own accord for family leave. During this same time period I was also involved in a two-year battle with a past employer--the Army--that I ultimately lost. It started when I filed what I thought was a clear cut case of discrimination. I worked incredibly hard on the case (it helped that I find employment law really fascinating and would love to go to law school to study it, but won't because the system is so unfair that the frustration of the blatant injustices would tear me up) and thought I had as good a chance at prevailing as anyone possibly could. I was wrong. I do think if I had the money and energy to appeal I could have succeeded, but I was broke and worn down and just didn't have the strength. The only consolation was knowing I caused my employer to spend an inordinate amount of money that came directly out of his budget on his defense.

Filing a complaint with the EEOC or NLRB should always be a last resort. If you and your employer can agree on accommodations that meet somewhere in the middle your doing pretty good. No one, outside of those of us who have narcolepsy or idiopathic hypersomnolence, truly have any idea how devastatingly difficult it is just to get through the day. Even medical researchers who specialize in sleep disorders don't always get it. Of the fifty or so medical research reports on N or IH I've read (I write medical research proposals for living, so I have access to a lot of medical articles) only a couple of doctors say that while naps during the work day may be beneficial for people with N w/C, it isn't a realistic option for most people.

An old friend of mine who is a naturopathic physician once said that "Life is pain. If you're not hurting, you're dead." What he meant is that life isn't perfect for anyone. Everyone hurts in one way or another, so instead of focusing on what sucks about your life, just keep putting one foot in front of the other. Fix what you can, and then live as well as you can with those things you can't.

[malachi777]

well I am sad to say your job sounds much better than mine....I work in a welfare office and they do not like people with disabilities or work modification papers. they have constantly harassed me and I really dont know how long I can hold on...they were still mad from 8 years ago when they were trying to fire me for nothing and I filed a complaint on them with the eeoc office....they give me extra work all the time that the others dont have to do and if I complain they really get mad....they say if they see anyone at my desk I am visiting instead of working and they dont even know if the conversation is job related....but <i>then I see them laughing and talking to other clerks in my face. They stand around having conversation that are not about the job at all...they tell me they will be watching me and my supervisor peeps at me all the time. I am so sick of them I was sitting at work on 9/05/08 trying to hold back the tears....my narcoleply gets worse in the situation i am placed in........very depressed................sleepynet

</i>

If there is one thing I know will help you in the future incase you need to sue these idiots, WRITE DOWN THE DATE, TIME AND EVERYTHING THEY SAY AND DO!!! I had a lawsuit and the judge favored me because I had all the harassment written down. He said,"The Court of Law does not approve here say as fact, what is written on paper is fact?" You need to even write down when the supervisor peeks on you too, especially if it is habitual. This goes for all of you. Keep written record of everything and especially keep all Kudos and copies of reviews.

[ragtimegal]

I'm so sorry that you've gone through such an ordeal. The treatment you've endured sounds absolutely horrible. I taught Special ED for 2 years. Sitting in a quiet classroom was a gruelling experience with undiagnosed narcolepsy. Only when I went to work for UPS was I able to stay awake, as I was always on my feet and moving fast! Also, I could afford to get a sleep study and diagnosis. First and foremost, Provigil doesn't work!!!!! It only works for the first few weeks, then wares off so quickly that it has an opposite, almost tranquilizing effect, making N attacks even worse. I found out the hard way and ended up missing days at work with sleepiness that was so profound. I never used Provigil again. I tried every med available and ended up using a time-released low dose of methyl phenidate (ritalin). I was prescribed 2 doses per day, but seldom need the 2nd dose. It doesn't have all of the bad side-effects, nor a "crash" if you forget to take it. Most days at work, I take a 20 minute nap during my lunch break. It seems like I've been asleep for hours and I feel re-energized for the remainder of the day. Also, stay away from sugar, soda pop, processed junk foods and heavy fried foods, or any place with a drive-thru. Those things work as a powerful sedative on a person with N. It sounds silly, but if you excercise for 15 minutes before driving, it makes such a difference. I had a long walk from work to the parking lot, so exercise was mandatory for me.

About the unfriendly work environment: keep a journal every day. Keep track of who, what, when, where, what was said, how it made you feel, even rumors and hearsay from others,etc. Frequently, when a person has been singled out by a boss, co-workers sometimes join in, making the work environment unbearable. I kept a journal at my job during a two year period when I was being harassed by a racist boss. I wrote each incident down as soon as I could on matchbook covers, kleenex, whatever was available. Finally I carried a note pad in my pocket. When my review came and the boss tried to fire me, I put all notes together in a nice report with dates, times, documents, even photos from my cell phone. In the end, the company fired the boss and formally appologized to me. It helped a bit, but nothing can pay back those years of unceasing harrassment. It affected my home life, caused nightmares and interfered with my activities outside of work. I was tempted to contact the media, 60 Minutes or 20-20. You can also contact and file a complaint with EEOC, but that takes months to process. If you belong to a union or employee association, you're entitled to help and representation.
I hope everything turns out fine for you. Hang in there!