Post Edited (Axa) : 3/22/2005 5:29:55 PM (GMT-7)
When my seizures became worse a few years ago, my employer made "adjustments" to my job description. During a staff meeting with my colleagues, I tried to be honest and explain my situation so they would know what was going on with me. I didn't want them to have to guess or learn thru the grapevine what was going on.
I thought my supervisor was being sympathic to me when a ride was arranged for me to the office and my schedule was changed so I could have a more consistent work schedule. But after a few weeks, when my production level fell due to the restrictions I had to have, The director of the company called me in and "offered" me a "new" position - one with a lot lower pay and less prestige.
When I looked to my colleagues for an explanation or insight, they shrugged their shoulders - nobody seemed to know why. The boss said to me she didn't want to jeopardize my job due to my falling production, so she was "offering" me a new position! She said she wanted to help me and this way I could keep working. I felt this was the first step to pushing me out the door of the company. I put two and two together when I saw someone being interviewed at the boss' office shortly after that.
Of course, I'm sure management would say differently.
I realized then that management's job is to protect the company, not the worker.
When management was being so outwardly "concerned" about me, I didn't really expect them to look out for me and take care of me. I mean, it would have been great if they really did help me to function at my job, restrictions and all. But I somehow knew deep down inside, it wasn't genuine concern, and I would have been very surprised if they did.
What I wasn't prepared for was the lack of support I got from some of the people I had been working for for many years. People I had gone out to lunch with, worked side by side with, had many discussions with...most treated me differently after I had my little "talk" with my colleagues concerning my seizures,..... it was like telling them I had leprosy or the black plague. Suddenly, I discovered that those very same people acted very differently towards me. I THOUGHT that if I explained things to them they would understand and not be afraid of me and my situation, but I guess it was the wrong thing to say. I was suddenly very aware of the lack of normal communication I usually had between me and other people during a normal work day. Talk about the cold shoulder.
One co-worker I knew well and trusted was able to give me one valuable piece of information that confirmed my suspicion - The other people I worked with were holding meetings without me. I wasn't told about them or invited for a reason...because I suspected they were having planning meetings - in order to make arrangements for my workload when I left my position.
I can't say I really fault anyone specifically. But rather, it's the problem of educating people and making sure they really understand not to be afraid of people with epilepsy.
Mary- I think I can see why you feel the bitterness from your experience. Here's a quote that makes me feel there might be some hope for people if they could just get over their fears. Maybe they would act more civilized.
"There is only one Good, Knowledge. There is only one Fear, Ignorance." - Socrates
Thanks for caring .
When I first found out I had epilepsy over 20 years ago, I had a very understanding boss. My boss pulled me aside and said, "Listen, Glenda, I know you are capable of doing this job, and you take as much time as you need to straighten this thing out. This in no way will have an impact on your job." So, I went to have my tests and appointments, went on meds, etc and eventually was back to full speed again, thanks to a great boss.
I'm grateful to have had such a good experience with my first job. It opened new doors for me. Imagine if my first boss had turned the other way instead of giving me a chance. I would be who knows where. So, even though this last job experience wasn't pleasant, I look forward to going back to work as soon as I am able. I KNOW I'm bound to find nice people to work with again.
People with Epilepsy are Discriminated by not only employers but the government that allows those employers to refuse to give us acceptable work.
Having spent 2/3 thirds of my life diagnosed with physco motor Epilepsy and having spent 2/3 of my life looking for a new job each time i seizured at work I learned that I was never going to be able to support my family. Wages were always sub poverty and left me with a hand to mouth existance.
In 1981 when one of the 57 neurologist who told me that I would never be a surgical candidate when i questioned him, I had 12 spike areas in my brain, was his reason. This all changed one day when i went into convultions caused by water retention caused by tegratol.
The same doctor, then told me that medicaly I could no longer be treated. Surgicaly I could. I was refered to Rush Presbyterian St. Lukes Medical Center in Chicago .
It was here where a much faster eeg machine was used to pinpoint the focal onset in my Right Temporal lobe. Surgery took place on may 22, 1981 and at 7:00 Am that morning I suffered my last seizure. I was 39 then. On June 5th. i went home and was to be off for 1 year.
3 weeks later, my employer, a fedral contractor, gave me the choice to return to work imediately or be fired. Three weeks after returning, the harassment became so bad that I had fallen into depression and was fired.
Reinstated after admitting myself to the local physc ward for treatment I was reinstated so that I would be covered on insurance.
May 5, 1982 I was released as able to return to work by my physc. I was fired the day I delivered the release to human resources for being well.
I filwed a charge of wrongful termination and discrimination with the Illinois Human Rights Commission and the charge was never investigate.
Since then i have had no Insurance, No Follow up and have had to seek physc. help from community mental health services who have no idea what the burden of normalcy is.
Without help , each person who does have this surgery should be told of these problems long before the surgery takes place and families should be advised before the surgery that they need help too.
I say this because as my behavior deterioated, my family did not know what was going on, blamed me and now at 63 years old, I have never seen my grand children, most of my kids are to terrified of me to speak to me and i never did achieve being normal.
The only way i found was to quit trying to make a living and settle for the 800 a month social security.
my ERISA guranteed retirement benefits were stolen on the same day as my medical benefits. They should have been around 35,000 a year had I ever been paid a regular wage from this company. I can not blame any one other that the government that allows this kind of thing to happen and hope some day my kids will forgive me.
First, Let me say welcome to HW. I appreciate your candor about your feelings concerning surgery and thereafter. I am scheduled for epilepsy surgery in June and I know the positives and really appreciate knowing how others feel afterwards, good or bad.
Wow, your story is so emotion-filled and one that I had to read several times. I'm So sorry for all the pain that you've had. How are you dealing with it now? Is there any form of stress reduction that you have? I've really gotten a lot of help here at this forum and hope you can find some support form the others, as I have.
Hang in there,
ddbb- yes, it IS a like a slap in the face --no, let me say, it is rather...like a TRUCK HIT YOU when you suddenly find out that something you are not controlling is now controlling your life and the direction of your job. Now, I'm sure a lot of other people with other diseases have the same problems of the shock and depression that comes with their illness. I guess it's the stigma thing that goes with epilepsy that really bothers me the most. I can't help wonder what others think when I have a seizure in front of them or when they learn of my condition. I totally identify with you. Do everything you can, ddbb, to support yourself and others around you. Don't let it paralyze you! I am slowly trying to coming out of my stupor of shock and depression, as there is noone that will make sure that I truly take care for myself than ME. WE SUPPORT YOU. Please take care of yourself. Keep trying. Don't ever give up. Come here when you need the support. You are NOT alone.
Steve- YOU SAID IT LIKE IT IS, BROTHER!!! And Thanks for your kind words, I always enjoy your posts. -Glenda