Hello, my name is Scott, and i am really tired of being angry!!

[santaclaus]

Hello everyone, I have had epilepsy most of my life ( I am 32) but did not understand the need for epilepsy awareness until about three years ago. I struggled during that time, and thought I could make a difference. I was wrong, and I am an admitted failed advocate. However, during my failures, a funny thing happened. I was given a Santa Claus suit three years ago, and it changed my life. Most recently, I wound up in Aruba last December, and really found out what i could do with this character. Despite a small blip, I was real successful, and believe that the image of Santa, a very powerful image, could make a big difference.

I also play professional beachtennis, and would really like to use this sport as a way to raise money for different charities ( I would say just epilepsy, but I think players have the right to choose what charity the money they win would go to) There are a couple of tournaments this month, although since I can't train, it will be tough for me to do well ( that is not an excuse, but playing against world class athletes, I am being realistic) I have been searching for a business manager for awhile, knowing that if I could get some help, this could be a good thing for epilepsy.

I am also tired of being angry. Maybe it is because reality has set in, and I have been humbled. But I do know it was my anger that helped keep me alive, and it is my passion that drives me to do great things. I have shared some of my ideas with some people with epilepsy, and though they might seem unusual, everything I have done is to see how I can raise awareness for E. I am a guy that wants to act now, because I always live with that fear that I don't have too much longer. My passion, though useful sometimes, has been wasted, and it is all of my fault.

Again, my hope is to work with people who see the need for an awareness campaign. I know what i bring to the table, and will share it with anyone. My hope is to have epilepsy seen on TV ( one of my goals is to get epilepsy on the Mtv series True Life) and to make epilepsy awareness a fun thing in this country. I have the talent and the passion, and now I am just hoping for some direction. For the people I might have offended before, I like to consider myself a changed man. I would love to listen to any ideas people may have.

 

[Bernard]

Hi Scott, welcome to CWE. :hello:

We have a 'group' for advocacy here: Activist Roundtable where interested people can collaborate on projects or just share info. There is also a Bulletin Board forum for announcements.

Make yourself at home here.

 

[Georgiagirl88]

Hi Scott,

Welcome to the group. Wow..you sound like an amazing person and I love the fact that Santa changed your life. Yes Scott..there is a Santa Claus!!! : )) I think you will really enjoy the group and love sharing your thoughts here.

Michelle : )

 

[Meetz1064]

Well, hello and

welcome to CWE!! You've found a wonderful place to be! Mr B (Bernard) has made us an AWESOME home here....

You seem to have learned some painful lessons...for that I'm both happy, and sad. Happy that you gained from them, sad that you had to go through them. And tickled as punch that you believe in Santa Claus! :bigsmile: :bigmouth:

Stick around.....you'll find plenty of friends here. Keep that passion, and that drive. Check out the Activist Roundtable link Bernard gave you.

Buckeye will be by with some coffee soon.........

Take care!!

Meetz

 

[Nancy]

Hi Scott - welcome.
I believe in Santa too.
Sort of losing my touch with Santa is what sent me screaming to my neuro which sent me to the hospital for surgery.

 

[santaclaus]

I will say that I have always found Bernard interesting, and thought his posts were great, especially involving the ones about the different treatments for epilepsy ( I still remember that chart you used to post, and thought that was pretty cool)

I will tell you that there is not a worse feeling than being a failed advocate. I used to read the posts of many people ( three years ago was the first time I had any contact with people with epilepsy) and it used to make me cry. Because of what I was going through, I decided that the only way to help myself was to help others. In all honesty, my hope was that a teenager would not have to experience the same problems I went through, and that motivated me to no end. For a while, I really thought I could make a difference, and was blinded by this fact. Unfortunately, I think I made matters worse, and I do apologize.

And as far as the Santa thing. I have my beard, and am ready to dye it white to play beachtennis (there are you tube clips of me) but want to be more organized. I think Santa on the beach could draw a lot of attention, and I always believed that this could be the neon lights that would allow others to get their voices heard. I believe I know how this country works, and thought that being SAnta could tap into that great American Media network, and it might allow for epilepsy to get some national attention. But I am tired of doing this alone, and have proven by myself, I will fail miserably.

By the way, for those of you that might think it is strange that a 32 year old man dresses like Santa, I want you to know that I have done this differently than most. I was never a mall Santa (in fact, I have strict rules about not allowing kids to sit on my lap) and would never hold a bell asking for money. Mostly, I would just walk around as SAnta, and make people smile. It is the concept of unlimited giving that I have found so fascinating, and I want to develop projects, including possibly a comic book, christmas album, and other things where a percentage would go to charity. Santa Claus is a billion dollar a year industry, and I just think we could do some good, and raise a lot of money for charity using this image ( this also came about when I realized that we didn't have a strong celebrity spokesperson for this illness. I began to think who better to represent this illness than Santa, the most recognizable character in the world)

I believe I have some people willing to help, but it is tough being a bum ( I hate to use this word, but I am very poor, and live with my parents who don't seem to understand. Plus, I have holes in my sneakers, and probably don't look like much) My goal all along is to find people that care about this illness, and to see if we can develop this character into a national sensation ( think Spuds Mackenzie with a good cause)

I apologize for thinking big, but anything less would be a diservice to all the people with this illness. I figured that this image, at the very least, could let people know not to stick anything in our mouths during a seizure ( I worked hard trying to get seizure sticks taken off the shelves, and actually got one company to comply)

I am happy about the warm reception I got, but am hoping to find like minded individuals that can possibly use this idea of Santa and make it work. If I could do it myself, I would, but I just can't. I know it is not fair to my parents, and would like to figure out a way to get out of their house and start this project. Again, I have never asked for a handout at all, but I am looking for people or organizations that might be able to set something up where I can just concentrate on the task at hand, and not have to worry about who I am bothering ( I hope this made sense, and did not come across as being snotty)

I play in a tournament this week in Long Beach NY ( I live close by and can get to it) but because I have no money, can't make it to South Carolina in two weeks. There is a huge tournament Labor Day weekend in Long Beach NY, and for a while, I thought I was going to be able to work with someone that would have hosted a benefit, and used the image of Santa the right way. It did not work out the way I hoped, but I do not want to stop trying.

I am an athlete that is very entertaining, and a friend and I even came up with a concept for some T-shirst ( it is just not the polar bears being effected by Global Warming!) Obviously, I have thought about these ideas a lot, and I hate to think all of this is going to waste. I will check out the advocacy thread, but I wanted to lay out what exactly I was hoping to accomplish, and what I kind of need. I hope this did not offend anyone, and would not have posted this if I did not think I could help. I am open to any ideas, and I want everyone to know how serious I am. With much respect, Scott E Bananas ( by the way, I used that name when I started doing some advocacy work for a special reason)

 

[haird18]

Hello There and welcome!

Scott,
My name is David Hair and I just wanted to tell you that I have gone through alot of tough things in life with epilepsy and other brain abnormalties .I guarantee it isn't worth getting angry in life. And you will find many friends and supporters that care.
David Hair

 

[Birdbomb]

My Santa has Epilepsy?

Hmmm.. isn't Santa suppose to stay off the roof?

Interesting aspect but not sure if I like this concept.

 

[skillefer]

Welcome santa! The group here is really friendly. Make sure you check out the advocacy group. E can be frustrating at times. But keep the faith. We're here for you.

 

[Bernard]

Scott has posted a bit about his work as Santa on the beach tennis circuit over at the EFA. I seem to recall that he posted some pictures too (Scott, you can upload them to an album here if you would like to share them with the group - see your control panel for albums).

Basically, he is playing beach tennis (think badminton on the beach) while wearing a Santa Claus suit. The suit gets attention (and inverviews with local media) and Scott is able to talk about epilepsy and get exposure. IIRC, he also writes S.U.D.E.P. across his back when playing without the suit. I hope I got that right... From the pics I saw, and the events he chronicled at the EFA when he was doing well in a tournament, he has a good thing going.

 

[santaclaus]

Thanks Bernard, you got it right. My resume speaks for itself, as far as the whole Santa thing goes. (I tried to post this article, but it wouldn't let me)

Once again, i know this idea will, because it has worked already. But the problem is that because of all of my problems these past couple of years, and the fact that i am poor, people will never be able to take me seriously. I can't train properly, and live with parents that don't like the idea of what i am trying to do. So, instead of working hard on the epilepsy awareness campaign, which I think is needed, I am forced to just sit at home and wait.

It is frustrating because I read all the time about athletes over coming odds and making a difference. But they all have had some sort of help, something i have yet to receive. The only thing i need is a business manager ( other athletes have sponsors, why can't i) to set this up. But, because of what i want to do with epilepsy, it probably scares off many people. Well, it shouldn't scare off people in here.

What if I was correct, and Santa in the summer, if done correctly, could bring some national attention? Would that be a good thing for the Cause? ( I have said all along that Santa could be the neon lights, and it would allow others to have their voices heard. However, the only reason this won't work is because i can't do it by myself, and need some help. I don't think this is a bad thing, and i don't mean any disrespect. But if we could get some attention, and raise money in the process, how could this be a bad thing.

By the way, I wasn't kidding when i said i have done a bad thing for epilepsy. Being poor and passionate is not such a good combo, and i turn people off when i speak about epilepsy. If i was on my feet three years ago, the sport of beach tennis might have backed me up in my attempts to raise awareness, especially considering the way I play. But now, I am often talked down too, and last year they refused to mention what SUDEP meant.

So, what do i do? Stop talking about epilepsy because I am poor, and I am bringing a negative light to this illness. I will never do this, and i will always play beach tennis. So, they will think i am crazy, and instead of giving out pamphlets to the people that watch me play, i will do nothing, begging for somebody to give me a drink. LOL

I am confident in my abilities, and have proven myself time and again. The only thing i have failed at is my ability to find a business manager willing to take on a passionate athlete who cares more about epilepsy awareness than most. I know my story is not for everyone, but I do know it takes just one person to see the passion i have, to understand how this idea could benefit people with epilepsy, and realize we are missing out on a great opportunity.

If anyone emails me, i can send them you tube clips and an article written about me. i am not sure what else is needed.

 

[santaclaus]

here is an article about me

Even Santa likes to summer in Aruba-but with a serious purpose

It’s possible you may see Santa Claus hitting the sand of Aruba’s beaches sometime this summer, as Aruba’s famous “Sanderclaus,” Scott Lannan, the man who considers himself “the luckiest guy in the world” for discovering Aruba and its people.

Scott was invited to Aruba in 2007 by tennis pro Sjoerd de Vries to enliven and participate in the first Aruba International Beach Tennis Tournament, as Scott is a competitor. However, he also brought with him his alter-ego, Santa Claus, which soon became known around Aruba as “Sanderclaus,” as after a round of beach tennis, he was often quite covered with sand.

For thirty-two-year-old Scott, who has suffered chronic epilepsy seizures since he was seven-years old, and lives with a special sort of pacemaker, a Vegas Nerve Stimulator in his chest to control his grande mal seizures, it was a new lease on life to spend a month in Aruba, being Santa, and “delivering smiles to Aruban children and vacationers.”

“I have been sick with epilepsy most of my life, but in the past three years in particular fighting a fight that no one in the States seems to care about,” explains Scott, “but when I came to Aruba to be Santa Claus, and the way that everyone here treated me, it is definitely the nicest thing that has happened to me in my life. Yes, I had the beard, and I was Santa, but it was how everyone accepted me, and how I was allowed to do different things, going to the schools, seeing how happy it made the children, I had never seen such warmth, and open-hearted acceptance before, anywhere.”

Scott began appearing as Santa Claus about two years ago as a way to bring himself out of a depression he was experiencing because of being fired because of his epilepsy, a situation quite a few victims of the ailment appear to experience. He was engaged in a three-year lawsuit against All State Insurance for discrimination that finally resulted in a small settlement. During that time, he was homeless and penniless. He even feels how he acquired the suit was portentous, just at a moment when he was seeking a way to get out of his depression over his situation. “When I put on that Santa suit, it makes people smile, and I forget about my problems,” expressed Scott.

For Scott, being Santa is not only fun, but a serious responsibility. “When my Aunt Marge, who I hadn’t seen in five years, saw me at the funeral of my grandmother over Thanksgiving a few years ago and how I was growing out my beard, she asked me what I wanted to do, and I told her I wanted to be Santa Claus,” explains Scott. Within a week she sent him a brand-new Santa suit. “She told me, “Be respectful of the power of the suit!” which at first I though was silly, but I realized I must live up to the image, it is not just me putting on a red suit, I BECOME Santa, and must maintain the integrity and live up to being Santa. When my aunt spoke of the “power of the suit,” you have no idea what that means until you see how it makes everyone smile, no matter what their age are who they are. It’s magic, and this inspired me, as at the time I was seeking a way to raise awareness about epilepsy, and I though this would be a great way to do it.”

 

[kayakmom]

Hey there and welcome

Ginny

 

[BuckeyeFan]

Ho ho ho

Welcome Scott - It is great to meet someone with your spirit. Keep up the fight young man.

When you need a break, I will always have a cup of coffee waiting for you here.

:cheers:

 

[jazz'smum]

Hello Santa Claus
Your ideas on raising awareness of epilepsy on reality TV are great.
I have only seen a couple of things on TV here in Australia. Mainly on real life hospital emergency type documentries, so it didnt really give people much knowledge on epilepsy.
Best of luck with your ideas.
Cheryl

 

[brain]

:hello: Scott!

op:

How's our Sandy Paws doing?
:roflmao:

You might not want to listen to the boys about
reading up on the Wedding Dress Thread! LOL!
fft:

Don't let the boys in CWE drag you into it!
:agree:

Listen to "US" girls!


:mrt:

 

[BuckeyeFan]

Scott - never mind Brain. She is dizzy from the heat in the kitchen ... where she is making me some supper. :roflmao:

GUYZ RULEZ HERE!!!

:rock:

 

[Meetz1064]

Um, Buckeye

WHAT PLANET ARE YOU ON???fft::roflmao:

 

[alivenwell]

The planet Brat!
I think I prefer Aruba.

 

[santaclaus]

Brain knows she can say anything she wants to me. Besides, I did minor in Women Studies, and have no problem expressing that one of my major icons I look up to is Rosie the Riveter.