I actually did a sociology paper on the disability rights movement, and the
ADA.  There was actually a lawsuit in which WaffleHouse was sued by the EEOC
for firing and employee for having a seizure at work, and Waffle House lost
and had to pay damages to the employee they fired.  I know it is
frustrating, but there is hope.  If you experience such discrimination, you
have rights.  If you can prove that the schools are not hiring you because
of seizures, they cannot legally do that.  What grade do you teach?  It
could be perhaps that if you teach younger kids, they are worried it will
scare them.  I had a girl babysit for me once who was 13 and my kids were 2,
3 and 7.  She spent the whole weekend at my house and she was taking seizure
medicine, and I asked her about it.  It turns out she had a brain tumor as a
child and was left with severe grand mal seizures that were not well
controlled.  I was annoyed to not be informed of this, because I felt that I
should have the right to know if her seizers were well controlled before
leaving her with my young children.  If she had focal seizures or absence
seizures or something that she could deal with without too much trouble, I
would not consider her babysitting to be a problem; but if she was having 3
grand mal seizures a day, I may have wanted her to at least invite a friend
or something to co-sit with her, because my kids would have found a grand
mal seizure to be very frightening at that young age.

If you teach middle school or high school, I would think those kids are well
old enough to now what a seizure is and it should not be any traumatic thing
for them if you should happen to have one, and the schools should have no
reason at all to black list you because of a health concern.

Good luck to you--I hope that you find out why you're not getting called and
you are successfully able to remedy it. :-)

cogge

having seizures.

  Hi, TIMM,
     Unfortunately, there are quite a few negative results of being a
person who has seizures.

    Yes. The few times in my life that I've had noctural convulsive
seizures, I felt embarrassed by my loss of bladder control.

I've been at the store or walking around town. Now, I'm too afraid to take
public fixed route buses.

lack of education, sensitivity, and empathy for what it is to experience
epilepsy. People have mythical ideas and vocabulary about "fits". I am aware
those of you from the UK lands still use this expression. It is, however,
less desirable if our goal is to increase facts and eliminate
discrimination.

    Curtailed???? Stopped cold in their tracks is more like it.!!!! I
cannot get work because I cannot drive. I can't get to a job on time
reliably. I cannot apply for many positions for which I would otherwise be
qualified because one of the requirements is a "valid driver's license"! I
am so frustrated and depressed, I can't see straight.

a long-term substitute teaching assignment.  I came back the next day and
completed my term, but I believe that reference has curtailed similar
teaching prospects because people are leery of placing responsibility on
someone who may have a seizure.

addition to the seizures. I have spasticity on my right side as the result
of a stroke I experienced as a baby. I also have a limp on my right side.
Sometimes, I trip over my right toe and fall.
    THEN, there are the seizures. For the past 20 years, I have had a total
of 2 teaching jobs. There are several issues which might explain why. The
scenario you described is one of the most popular. I believe it is referred
to as the "Cover Your Assets" phenomenon. Principals and administrators are
too worried about liability ( "What if something happened to one of the
little darlings while Teacher X had a seizure?" or "What if Teacher X is
hurt on the job? It will make our insurance costs go up.") than they are
about ethical and fair behavior in hiring practices. Truth is, most of the
time, the good ol' boy network is just about insurmountable. Being a person
with a disability makes the quest for work that much more of a
headache ---and a heartache! Who better to teach students with disabilities
than someone ELSE with a disability, is my question? I suppose the folks in
power think that if I were any good at what I want to do, I would've been
hired by someone already.
    There is a trap: you have to have a job to get experience & experience
to get a job. With no means of transportation from Point A to Point B, how
is this possible? Cogge' suggested there are laws of protection. The
problem? In most states, there is what is called an "At Will" hiring
practice. This means an employer can hire or fire a worker at any time for
any reason. In order to successfully appeal on the basis of ADA, a person
must have a great deal of evidence. The employer doesn't have to justify
his/ her actions, I don't think.
    I don't know what the solution is to this dilemma. I'm not even certain
I'll see an improvement, never mind an answer to the employment garbage in
my lifetime; I'm not that old, either. Tim, it's ironic that you posted your
question at this particular time. I am presently looking for a teaching
position. You know how it is. Don't call us, we'll call you. Well, so far,
no one's called. The summer is well spent. The staff is probably chosen.
Another year to wonder "What if...?"
    Maybe if every legislator had to hear, see, and encounter the
pre-conceived attitudes and walls of judgment we must daily face as people
with epilepsy, laws would be enforced. New laws might be created to insure
that every individual has equal opportunity to work and accomplish what they
were intended to do on this planet. Maybe we should take this thread, copy
it, and mail it to each of our lawmakers. If we don't tell them what life is
REALLY like, how can they help us?
    These are just a few of my thoughts. Thank you for your time and
patience in allowing me to present them to you.
                          Blessings,
                          Suzanne

I had a seizure at work after returning from brain surgery.
Someone in personnel sent me a letter strongly recommending that I go out on
permanent disability
because of the amount of office work hours that
were lost when I have a seizure.  I showed the letter to
my neurologist and someone at the Epilepsy Foundation.
They both got very angry and strongly suggested that
I see a lawyer ASAP.  I did and settled for a job as
long as the company existed.  It worked for 12 years
until the company went bankrupt and was bought by
another compary when they came out.  Most of the
old timers were let go them.

It sounds like you are asking these questions of the folks with grand
mals, but I'll stick my nose in anyway (I'm a CPS person).  As far as
external factors, yeah, loss of driving was a big deal because there is
no public transportation here.

The internal stuff that is directly associated with seizures would be
the physical symptoms when I have a seizure and the paranoia; it feels
awful to me.  Then there is the fear of having another seizure.  The
need to sleep afterwards is pretty intense, but most of the times I
force myself to stay awake, and that feels pretty uncomfortable.

Barb

It is all of the above, plus: the brain damage and memory loss caused by the
seizures and/or the drugs, and the fear of "when is the next one coming?".
Not to mention the  "hit by a truck" feeling following the seizure and the
horrible "post-ictal state", which can last for up to a week (for me).

Hi Tim

I've had epilepsy for 21 yrs now, since I was 13 and it has varied sooo
much over that time - mostly with different tablets giving me side
effects that Drs/Specialists/Professors wouldn't belive just because it
was written in 'the text books'!!!

I think that actually having a seizure in a public place is one of the
worst things about having epilepsy; as I don't actually go unconscious,
so during the distress of a seizure, I can see and hear people looking
and talking about me.

Being incontinent use to be embarrasing but I have worn pads for so long
now that it has just become another part of my life, like the epilepsy!

I do find that  when some people know you have epilepsy, they treat you
slightly differently.  Once I actually got told - 'Well you don't look
like the type of person who has epilepsy'!!!  I was shocked at the time
that I didn't answer with a sarcastic reply.

Also having to tell people when going for job interviews etc. that you
have epilepsy is a bit of a bind but I try and turn it into more a
positive thing, then you don't get such negative responses back.

Adey

Hello,

In my situation: I was diagnosed with epilepsy when I was 0 - 3 years old
(approximately as my old folks cannot remember exactly at what age I was
seizure free without meds; so let's say 3 years old / we also do not know
what kind of epilepsy I had because my old folks were never told by the
neurologist at that time), then absence epilepsy came at age 10 till 15 (my
old folks cannot remember exactly at what age I was seizure free without
meds; so let's say 15 years old).

Now in February 2004, at the age of 29, I had my first tonic clonic seizure
after a boat trip on the North Sea during a company event because during
nighttime on that minicruise, I had drunk too much, I did not sleep at all
and prior to the boat trip and I  had to organize the whole event (40
people) which caused loats of stress.

Furthermore, the seizure happend after I went off the boat. I was walking
with three people to see the small city we were docked -one of them had
already seen a grand mal seizure when someone fall of a ladder while washing
the windows so he knew exactly what to do; the other person had a brother
who is a paramedic and the other one, well he saw it for the first time. My
other 36 colleagues did not see it but only heard it later on what happened
to me -they actually blame it on the alcohol and see it as a one time
incident. I was hospitalized and could only recall that I was able to warn
my colleagues that "something" was about to happen.

Right now, I tell them that I am on meds but they still see it as a one time
incident because of alcohol abuse, etc.This of couse means they do not
really consider me as someone having epilepsy / having a disorder. They just
say I should take more care of myself. This year, I even got promoted for
the work I did last year. I guess I am very lucky though I would really
wanted to have no issues at all during that company event that was supposed
to be having fun together with colleagues on a minicruise.

People react quite differently. Some people find it scarry to ask me
questions because it is something "new" and "strange" to them. Actually,
they do not want to ask the questions -if they ask questions, then it is
because it is polite of doing so. I do not want to bother them as well but
also do not avoid talking about it / answering questions when one asks me
what EEG results were and what epilepsy is, etc. Some people actually don't
care asking questions -they know "someone" having epilepsy too and they
really don't care -as long as I have no issues with speaking about it. Some
people make jokes about it and I can laugh as well, some people don't speak
about it and that is allright with me too. The only problem I have with this
part of being diagnosed with epilepsy is that when people ask me questions,
they are not really interested. Fact is of course, that I had only whone big
seizure in public. I am not sure how I will react when I wake up again after
I had a big seizure in a huge shopping center?

I think it all depends on what type of seizures one is having and how
frequent one gets these seizures. How more frequent and intense the seizure
are, how difficult it will be for one diagnosed with epilepsy to deal with
it. It is important in these situations to have a strong family
relationship, many friends, who can help such a person to not get in a
social isolement. Reading through all these postings in this support group,
I have so much respect for all these other people / family members dealing
with this issue!

Though the seizure itself scarred the hell out of me and had all classic
symptoms (bitten tongue / peeing in my pants / losing control), it is
actually the diagnoses, the uncertainty and the long waiting period of
getting the diagnose done (meeting neurologist in March / having the EEG
done in April / having the CT-scan done in June, etc., etc.). All these
times I had my fingers crossed and pulled my hair out which caused lots of
stress too.

Right now, I am getting my live back together as my seizures seem to be well
controlled with low dose of Depakene (no reall bad side effects) -but still
fingers crossed :-)

Hi,
I realize this is an old thread, but I don't get to read this newsgroup
often, so I'm catching up.

health of a staff member.

Dawn

wanting

cogge

Way back in 1994, my daughter had an episode in school, which, as it turned
out, was not a seizure, just some kind of weird episode. She was placed on
Depakote for about 6 months, and then it was all over, thank God. Anyway,
she was in middle school at that time. I had to come into the school to pick
her up, and I tested her like the neuros test us (follow my finger with your
eyes, etc.). When I got there, I told them I had a seizure disorder (they
didn't know before - it was none of their business). They had the Drug and
Alcohol person there because they were sure she was using drugs, and I took
her to the doctor anyway, and had her tested and checked out. Of course, she
was negative for drugs and alcohol. Anyway, the entire administration had no
clue what was going on, so I offered to give an In-Service Day to all the
teachers. I had to get the OK from the Superintendent of Schools, because I
am not a nurse or a doctor. But I wanted to make sure that the teachers at
least have a rudimentary idea what was going on. I ordered some videotapes
from Epilepsy Foundation of America, and wrote out outlines of what I was
going to say. I showed the Superintendent before I was allowed to present
it - you can't just have anyone go up there and say anything, but it was
good that I had the EFA stuff. The teachers were amazed, particularly when I
described absence seizures. They had no idea that a person could have an
absence seizure and not be able to hear you. They figured that a kid would
just be acting up. The cool thing about it is that one teacher I can think
of asked to borrow one of the videos because his wife is a teacher at
another district, and apparently she had a student who was having absence
seizures but she didn't know what was wrong. I told them that they could not
make a diagnosis, and neither could I, but at least they could tell the
parents or guardian to have the child checked out by a doctor/nurse/ clinic
and maybe some of the kids that they think might be goofing off might
actually have a valid medical reason.
I have to agree that many times teachers are too quick to label a kid with
ADHD or ADD when all they have is an allergy to a food, or they need
attention, or they need a gifted program.

turbinado

Me too. I don't tell them during the interview, but after I am hired, then I
tell them I have a seizure disorder. I have found nothing except support
from employers. I could be cynical and say that they are thinking,
"Wonderful! She will add to our handicapped quota that we have to meet!" but
I would rather think that they are just being good people. <g>

Oh, and someone had asked about medications. I am one of the few people
still on Felbatol. I have been on it and off it several times because it can
cause aplastic anemia and liver failure, but I have been on it since 1994,
and the longer you are on it, the lower your chances are for developing
either of those. Unfortunately, the last doctor I had tried to get me off of
it and told me he would refill my prescription and didn't and I had a grand
mal seizure - the first one in 24 years. He claims it was the secretary's
fault, but we differ in that explanation. I don't believe that at all. He
inherited that secretary from the last doctor I had, who retired. I should
have sued him, but he would blame it on his secretary and she would lose her
job, and I don't think it was her fault, so I just bit the bullet, took my
records and went to Johns Hopkins and have a great doctor now, Dr. Ronald
Lesser. I can't believe that not very many people are on Felbatol. It's an
outstanding medication. They say it can kill you, but you know what? So can
aspirin. I think people are overreacting. I tried Lamictal one time when
they took me off of Felbatol and got a lump underneath my arm and got off of
that real fast. Other than that, I think Lamictal seemed to be a good
medication, but I wasn't on it long enough to know. I also tried Topamax as
monotherapy, but it made me suicidal (I have never been suicidal in my
life!). I am taking Topamax now along with my Felbatol, and it's OK, but I
just can't take it as monotherapy. Weird.

It's good to see some of the "regulars" and a lot of new people since I have
posted last.

JoAnne

The ills of Epilepsy.... I like that. I suppose there have been many in my
life way to many to mention here but in that many there have been those that
make me shudder when I think back on them. I remember the times in High
School when all the kids would make fun of me because I had to take meds, so
I would try to sneak and take them. I did a fairly good job of it but did
get caught a few times and it was embarrassing at times. I remember a
girlfriend once finding out that I had seizures, she never seen me have one
she just heard, she broke up with me. She is a nursing supervisor today. I
wonder if she still views Seizures the same way. I can remember childhood
kids that thought I was weird because I had seizures.

Working has been a treat at times. I was working for a large insurance
company in Houston TX and had a seizure on the job, they fired me because of
it saying I should have reported that I had seizures on the application,
there was no place for it, and besides that is discrimination isn't it? I
was working for an Appliance Store selling major appliances and audio video
equipment. I was talking to this one girl about a TV when I woke up in the
managers office and was told to sit still the paramedics were on their way.
I had a grand mal seizure and in the process I fell and broke my two front
teeth off against the TV I was trying to sell this girl. Hey I did go out
with her for about 6 months afterwards. So I had to get caps on my front
teeth. Then I was working for a large Pest Control Company in FL when my
Neuro decided it was time to change my meds and in the process she reported
me to the DMV as having seizures causing me to lose my D/L for two years. Ah
yes the ills of Epilepsy.

Then there is the personal issues that came along with it. The depression
and the battles to keep a straight head on my shoulders. But I am here today
to say I have won all those battles and am a better person for it. I know
how to treat people because I know how it is to be treated shi**y. I treat
people only as I would want to be treated. I am, as I have said in other
posts, my own boss now, so if I screw up and have a seizure I may give
myself a vacation. Screw the large Corps and all their political BS I am
here for me and my family and employees and my customers. I am happier today
than I have been in about 20+ years, with the exception of my wedding day,
oh yeah the honeymoon..;o) I am working in an environment where I have
complete control. So I consider this another battle won.

The biggest ill of all to me personally has been getting my seizures to
stop. I have to thank God that they have in fact stopped if just for a
couple of weeks so far that is a couple of weeks that I am thankful for.
Life is getting better day by day. Topamax has worked for me and still today
at the time of this posting is another day seizure free. That my friends is
not an ill it is a blessing.

I wish blessings on everyone in this group. And I will shut up for
now.......  >:o)