Help me out Cfers...and non Cfers....UPDATED!

jenhum

New member
Help me out Cfers...and non Cfers....

OK, so every year I go to this fancy smancy black tie silent/ live auction 6-course dinner deal that benefits CF. It's all adults, but I've gotten to go every year since I was about 14 since I have CF (duh). I love dressing up plus one year a couple bid on a puppy and gave it to me <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Every year they have a speaker, usually a person that knew someone with CF that died, or just some random local celeb to talk about how horrible CF is. This is usually the worst part of the night for me, b/c I'm sitting here listening to how awful CF is and how the lifespan is around 30 for most people yadda yadda yadda. I just stare at my plate hoping that everyone isn't staring at me or my family and praying that I don't cry in front of anyone. But I know that it's necessary for them to paint CF in this light b/c it makes people give lots of money. The sadder the speech, the more money people give.

SO, this year, I was asked to give the speech. AAAHHH! I am usually great with public speaking, but I am so scared. I really don't want to get up there and be like "poor pitiful me, my life is so awful..." b/c that is just not me and it's also not true. But I feel like if I get up there and say "well CF has made me who I am, it makes me appreciate the wonderful life I have...." which is how I really feel, people won't give as much money.

So can y'all please help me with speech ideas? I was thinking I could tell the stories of some people on this board, with their permission, or something like that. Or if you could just help me phrase things in a way that makes people want to give money, but doesn't make them feel sorry for me....is that even possible??? If I have to choose, then I'm willing to make people feel sorry in order to make more money for the CFF, but I'd rather find some sort of compromise.

The only redeeming factor of this years dinner is that my fiance will be there supporting me. Plus I think I get to carry around the puppy that they are auctioning off (<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0">). OK,I should definitely be in bed sleeping right n ow, but it just occurred to me that this speech is a week from saturday....yikes!!! I appreciate any and all advice. Thanks!
 
RE:Help me out Cfers...and non Cfers....

I thought Jamey's boxing match analogy was pretty good, did he give you permission to use that?
 

jenhum

New member
RE:Help me out Cfers...and non Cfers....

I thought that was great too, but for some reason it disappeared off the site? Jamey, if you're out there, I'd love to use that if it's ok with you!
 

anonymous

New member
RE:Help me out Cfers...and non Cfers....

hey jen

i do a lot of speeches in the uk, and i am the same as you. i love my life and i am a very optimistic person. but i do make sure that i drum into them just how much cf can take up/occupy your life and also how devestating it can be. although i look v well and have a great life, my lungs are still rubbish, and i have just been listed for Tx. but i concentrate on saying things like "thanks to amazing support from hospital etc, i can continue my life as best possible...." to show how their money can help ppl like me stay positive!

anyway please let me know if you want to have a look at hte kind of stuff i talk about, if you give me your email address or something i am happy to send you some advice <img src="i/expressions/face-icon-small-smile.gif" border="0">

otherwise best of luck and i am sure whatever you say you will do great and you will inspire some more people to help fight cf! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jenhum

New member
RE:Help me out Cfers...and non Cfers....

Yes! I would love to look at anything you have for inspiration!!!

jenhum@email.unc.edu

Thank you!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

miesl

New member
RE:Help me out Cfers...and non Cfers....

Hmmm, my idea would be to explain what you have to do differently every day - just to feel "normal" - while it's not terrible sounding to YOU (since you do it everyday) someone who is healthy is going to be shocked (pills, Vest, nebs, inhalers, if you get out of breath). Explain what you do extra when you're sick. Explain your PFTs, and what they mean. Talk about IV meds and hospitalizations. Even though you are optimistic about your outcome... the things you just take in stride as "a part of living with CF" are things that will touch people who only go to the doctor when they have a broken wrist.
 

anonymous

New member
RE:Help me out Cfers...and non Cfers....

Similar to what Miesl said... I immediately thought of something said at the funeral of a friend of mine who had CF. It was from the eulogy given by his father... I'm copying a small piece of the eulogy which I think was powerful for everyone and could be a very applicable idea for your speech:

"I asked Mikey Butler, back when he was younger, if you could have anything in the world, what would you want? It was back in the Make a Wish days, and this kid -- who said to the president, with the vice president standing by him, and Steven Spielberg and Norman Schwarzkopf, Mikey's two friends, standing behind them, he said, "This is my father, Judge Butler" -- and this kid said what he wanted more than anything else in the world was one normal day. No pain, no shortness of breath, and none of the seventy or so medications that it seemed he had to take all the time. Today is his first day like that. But it does give you perspective to realize that most of us had a day like that yesterday."

I think you can find a balance between "poor pitiful me, my life is so awful" and emphasizing to people how difficult CF really is. And I think even if you portray the "awfulness" in your life in a way that's indicating that it isn't so awful to you it'll still have an impact, because people will still be taken aback by all the everyday medical involvement that we take for granted but they have no experience with, while also being impressed with this amazing person with CF who can handle it like it's no big deal.

People tend to take their health -- their normal days -- for granted, so I agree with Miesl that just pointing out how your normal day doesn't come close to what they take for granted will make an impact.

GOOD LUCK!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Starfall99

New member
RE:Help me out Cfers...and non Cfers....

That last post was me, forgot to log in, oops. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
RE:Help me out Cfers...and non Cfers....

If you look around on the posts everyone has listed, I'm sure you'll get some ideas. Once in high school, I wrote a speech on things people take for granted. With as a person with CF, you can point out what others take for granted. The regime you must keep up just to stay healthy, whereas "normal" people don't even put much thought into what they do on a daily basis. The struggle for a breath of air, that so many of us has experienced more than once in a lifetime, that non-CFers never even think about. The ocean of pills we must swallow each day (there's a topic on this site about the about of pills we swallow each year). The amount of time you spend on inhaled meds. Interview some other CFers on their regime. Talk about hospitalizations. How many are faced each year. What is considered a good day.

There is so much you can talk about.

-Sunnie

sunnie1981@hotmail.com
 

jamey

New member
RE:Help me out Cfers...and non Cfers....

<blockquote>Quote<br><hr><i>Originally posted by: <b>jenhum</b></i><br>I thought that was great too, but for some reason it disappeared off the site? Jamey, if you're out there, I'd love to use that if it's ok with you!<hr></blockquote>

i will repost it for you tomorrow or sunday if ok
 

jenhum

New member
RE:Help me out Cfers...and non Cfers....

Thank you!!! That would be great Jamey. And thank you to Emily T., I got your e-mail and it was very very helpful!!!

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

vickysmommy

New member
RE: Help me out Cfers...and non Cfers....

You dont necessarily have to tell a story about yourself do you??? You can tell a story about others worse then you. Maybe show a few pictures, (feeding tubes,ect...) Tell why their money is needed because of how close we are to finding a cure.
 

AngieM

New member
RE:Help me out Cfers...and non Cfers....

Hi Jenhum. I was just wondering how your speech went. Did you use Jamey's analogy? He went into hospital on Sunday for IVs. Just spoke w/ him and he asked about your speech. Thanks.

Angie
 

jenhum

New member
RE:Help me out Cfers...and non Cfers....

Hey! I was just about to post and say that it went great! I did use Jamey's analogy and SO many people came up to me afterwards and said how much they liked it!

Overall, after expenses, the event raised a little over $200,000!!! So that is really great. An adorable golden retriever puppy went for $6,000 in the live auction! The coolest part of the night, though, was the "bid for a cure." It is similar to a live auction, but there are no prizes, and the numbers start out high and go down. The MC calls out an amount, and everyone that wants to donate that much money raises their hands and they are given a donation form to fill out. Usually the MC does $5,000, $2,500, $1,000, $500, $250, $100, $50....but this time he decided to ask if anyone wanted to donate $10,000......and two people did!!! That just blew me away. These people don't have any cfers in their lives, but they each donated $10,000....WOW!

So anyway, it was a great night!!! Thanks so much for all the advice that y'all gave me. I was pretty nervous but it turned out wonderfully!

If y'all want to see my pictures of the night, here they are! <a target=new class=ftalternatingbarlinklarge href="http://share.shutterfly.com/action/share/view?i=EegMmbVm4ZtmEN&open=1&sm=1&sl=0">Picture link</a>

<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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