Speaking Out on E?

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Sure we've got epilepsy, and we've learned the challenges surrounding it. Not only the medical ones, but the financial walls we have to climb, the employment issues, and probably the most challenging one--the social side. That is, getting those around us (from partner, to fellow employees, to blood relatives, to employers) to accept us as "regular" human beings. I'm sure that the majority of us will reply, "God yes, I know of those problems!" However, how many of us actually take the first step socially and start writing to newspapers, magazines, politicians, and TV stations to get them to consider making our thoughts known? Oftentimes, I think that individual letters are far more impressive than going through social service organizations, for they tend to give us the "Now you're going to be alright" advice, then put our file back in their cabinets, left unattended till we call again. I've been on TV, had articles published, walked in parades here in NYC, to the point where people actually stop me on the street and say, "Hey, aren't you the one they interviewed the other day?". I'm flattered, of course, but am always impressed by the number of those people noticing me and getting into a conversation mentioning that they have loved ones or friends with epilepsy. In many ways, I feel that the attention given AIDS far exceeds what we "epilepsy folks" have received. It's time we did a bit of public relations on our own. Sure, using an organization such as "my.epilepsy.com" is a wise move, but do consider the further things you can do to take the misunderstanding and fear of epilepsy out of the average person's mind. Start by writing back right now and pointing out specific things you've done. Who knows, you may give this man even more roads to take! --George

Comments

Re: Re: Speaking Out on E?

Submitted by gretchen1 on Sat, 2006-08-05 - 22:34

BTW - Dundee who just posted above me? Has had E a long time and has been a staunch, in action advocate for a long time. He has never drawn attention to himself and actiavities either. When I first joined a forum he was one of the first to extend himself to me and later I found he was having some significant problems of his own. He never mentioned it. Dundee my friend? Hang in there and if YOU need me right now? Write to me. I've really done quite a bit but right now to be honest? I'm questioning if I've had any impact at all. The one thing that gives me hope is how far we have come since the l950's. I don't think I read it here but just the other day I reada that over 30,000 people in the '50's who had epilepsy and that was all that was wrong with them had forced sterilization and often weren't told they had been sterilized. That's not counting forced lobotomies, forced institutionalization, special education for normal intellects and too much more. I found out after my mother's death I was diagnosed with E in the l950's at the age of 7. In my medical records it states my mother asked even my medical records not state that and she gave a diagnosis she preferred. I never had a chance to discuss this with her but I believe because it was the '50's and how we might be treated then, plus they were new emigrants they were frightened for me. So we have come a long way but question yourself why? People before us did a lot of work for us huh? Well, I have a 6 year old g-child with this and I DO worry for her. We all should worry and feel a responsibility for us and the next generation and obviously people before us created a lot of reform and awareness. I've given, with my neurologist, inservices twice to police departments with material from EFA. I'm a dog trainer and have searched for months and months for one of the 5% of dogs that alert, are the appropriate temperate, size, age, all the many factors to hone their alerting skills then taught them assistng skills, got them state certified as service dogs and donated them to children recommended by an epileptologist's office that screens thoroughly and recommends families, even out of his practice. AND one cat that alerts a man at night for nocturnals. I wrote a PSA I know Dundee has read. To date I just found out my daughter and I have gotten it aired repetitively for at least several weeks on now 15 radio stations. It is 15 seconds and we give them the choice of reading it themselves or a CD we had a professional speaker prepare. That is not hard to do at all. I used to post the PSA, encouraged others to use it, never copywrote it but to my knowledge no one has ever used it. I have just written a new one and we have two radio stations that are going to repetitively air it. It's a tax write off for them too. BUT, a BIG BUT, why doesn't the EFA who is our representative have TV spots? I posted not long ago that one of THE most impressive ads I still remember on TV was "this is your brain on drugs" and they showed a frying egg. I've talked, campaigned, written hard letters to EFA asking them to please start educating as other syndromes and diseases have done on TV. Radio stations are doing it for us for free. I definitely can't afford a TV spot. I know we've reached thousands of people but national TV? A visual? It could make a gigantic impact for us. I think not only of myself but my effected children and grandchildren. I've formed two E support groups. That's really not hard. I've laboriously at request printed out how to do it and to date, I don't think one person has done it. Do I sound a little angry? I suppose I am. If anyone is going to complain? Then be part of the solution. I used the skills I have to educate and assist others. The service dogs alone educate. I have one. People ask, what service does your dog perform and I tell them in a short paragraph and ask them if they have questions, thank them for asking. I'm really sick of feeling like I have rabies though. I can not sugar coat this and as the girl above said, maybe I'm simply going thru a bad period with this in my attitude but I'm dang sick of the way we're treated. Sick if I tell someone I have epilepsy they think I'll start spewing copious amounts of foam from my mouth, and sometimes dangerous medical care when I'm unconscious. The thread starter mentioned relationships were most important to him. We've had that problem but this hit us severely in the pocket. We've been homeless and not for a few days, it was a few months. My husband had open heart surgery, I exploded with E, we had a decent savings but when they won't let you work, ignore the ADA, the EEOC has no law enforcement abilities and your employer, no employer will accommodate you and you're refractory? Believe me, homelessness can happen pretty darn quickly and it's darn scarey. I will mention who finally gave us a helping hand was the American Red Cross. I called and went everywhere. My husband went to work with staples still in his chest, had to leave me alone sz'ing constantly. We were determined to pull ourselves back up tho and we did. Not to where we were but we definitely appreciate what we do have now, which is much less, than what we had before. Did relatives and friends help? One. Robin of course who posts here once in a while. It's not that we didn't ask. We were desperate. I will NEVER understand how anyone can turn away someone they "love" who is homeless. Yeah, well, I DO think we need some reform, awareness and I would just like people to know more about it. But you can't stuff information down people who aren't interested in knowing either and the minute I say that seizure or epilepsy word? I'm often avoided, interrupted, ignored and I'm becoming increasingly aware of it. I also want to say tho I don't sit home. I get out, I sz a lot, which means a do sz a lot in front of others and I am forever happy, relieved the people who gather around me are such compassionate and kind people. I've had some bad incidences. I've been roughed up by the police twice but the average citizen? They've been terrific to me, and stores too. Gretchen

Re: Re: Re: Speaking Out on E?

Submitted by Cathy_C on Mon, 2006-08-07 - 06:29

Congratulations to you Gretchen, you have done so much more then most of us. I am not a (up front of people) person. I do try to educate people around me who I am in contact with. I let people know right up front that I am epileptic and let them know what to expect and what to do/ not to do when I have a seizure. I find that if I let them know up front that I am, that they are not frightened of it. They have always treated me good. I work in a Medical Research Lab and work a very high pressure job with lots of responsibility, but my boss sees what I can do beyond my seizures. So my career skills are seen more then my disability, so there I am very fortunate. You mentioned in stores, I have had some of those incidents and have pulled down card & balloon racks. My husband was there and he said some saw and walked by, but others came to me immediately and asked if there was something he needed them to do. He just explained that I was having a seizure and would come out of it in a minute. People around me seem to be real understanding. I really don't feel like I am judged because I have Epilepsy because I don't let it limit what I do with my life. I don't allow the Epilepsy stop me from doing anything and I let people know up front. I guess I educate one person at a time about the condition. Oh well, that is sort of my story and I am sort of sticking to it. :) Cathy

Re: Re: Re: Re: Speaking Out on E?

Submitted by gretchen1 on Mon, 2006-08-07 - 12:00

Cathy I think you've done quite a bit in educating by being our own best example. You work a difficult job which many of us aren't even allowed the chance. You've therefore educated at least ONE employer. Good grief tell me where it is and I'll move there - just kidding don't post where you live. You and your husband state it correctly - she had a sz, she'll be fine in a minute. A ton of people think sz means t/c or grand mal. I, however, knock over displays in stores that BREAK! lol I knocked over a ceramic cup display that fell all over me, the floor, crashed loudly I heard and broke many cups. My worst was I got mesmerized by lava lamps, I guess walked towards them, then fell into the towering stack and was covered with the oil, glitter and ick from all of that - at Walmarts and Walmart themselves were terrific. I don't remember much of that until I was in the car. I know those lamps were expensive and I heard I broke quite a few. EEEKKKSSS. I've posted before if all of us would educate a few people a month? Just find a short way to educate others in any aspects, not give the whole history, physiology and how it manifests itself but to let people know we seize but we aren't contagious for instance. I've actually ran into that TWICE. That helps. And your example I'm sure is noted by many you work with and who knows how many others they educate themselves. I worked with two epileptics who were controled and they kept their conditions to themselves like the national secret. I don't blame them in many ways but I do think it takes a village. They could loose control as I did and THEN how would they want you, me, us to do? Gretchen