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It’s great that he has such courage, and it’s even greater (to me) that he specifically said “We spend too much time hiding illness.”

My girlfriend is ill with Lyme Disease, and lots of people can’t handle being around her on her bad days. Often they feel guilty because they can’t do enough, and sometimes that turns into anger at my girlfriend for “causing” them to feel guilty.

Most Americans don’t have healthy means of coping with someone else’s illness, which makes it all the more impressive that Mr. Ebert is going to such a huge social function.

Bravo, Roger.

So awesome. I hope he gets well enough to do reviews again, I miss them so much!

That is quite awesome. Thanks for sharing.

Whatta badass.

Ebert Kicks Ass.

Yesterday I was talking with someone about a mutual friend with a degenerative eye disease. He’ll be blind in a few years, and he’s only 30.

He is spending all his time raising money for a research fund for the disease. Everyone supports him, but lately our emails are flooded with advertisements for upcoming benefit shows, and he’s made our myspace bulletin space useless.

He holds on to the idea that his work will find a cure for a rare, unpublicized disease. His constant fishing for sympathy is testing everyone’s goodwill, and we now view his determination as desperation. It’s come to define him as a person. In a way, the disease has taken both his vision and his life.

For all I know, in the same situation, I could behave exactly the same.

Having a disease doesn’t automatically make you admirable. Ebert, in accepting the cards he’s been dealt, has earned it.

Good for you, Roger, and nice work calling it out Jason. Inspirational indeed.

@Very anon. coward I have a dear friend whose daughter has CF. My friend has started a foundation to raise money for research in the hopes of a cure. I get invites to fundraisers, events, research updates, etc. and I say bring it on. Send me all the emails you want. We should all be that hopeful and proactive. How can you criticize someone for working to find a cure? Especially for a disease that he has? Perhaps you should look at this in a different way and see the positives he is working to achieve. That would be admirable.

Jerry Lewis makes for a similarly inspirational story. Steroids and other drugs left him, to be blunt, very large and “puffy”. His response to the folks saying it was ok not to attend his telethon (for the same reasons as above) was very much the same. Since when was this telethon about me? I promised the kids I’d be there.

@Michele

I can perfectly understand Coward. You can either define the disease or let the disease define you. I have a genetic degenerative disease that I have to wake up and take shots for to keep my body from crumbling each and every day. Sure, when it was at its worst, I let the disease rule me…I was a whiny jerk and drove away a lot of friends because thats all I talked about.

I’m told the cure I have is only a temporary one. It will eventually kill me for the exact opposite of what was killing me in the first place. Hell, I just have my prostrate and colon three weeks ago because they thought the cure might have given me cancer (looks like its not…haven’t got the results back, but the endoscopist said he’s pretty sure at least that portion of my body is doing alright).

But like the very anonymous coward, I met a friend at a support group for this insignificant disease who is just as annoying. I’ve had to killfile his email. Worse is that he knows that I use to be a professional musician and tries to get me to get my friends to do his benefits and ALWAYS bugging me about this. Hell VAC —we might have the same friend. I got the nastiest stalking because of this as I ended up doing a charity event with one of my former musician buddies for breast cancer research and ended up on the front of the entertainment pages of one of the US’s bigger newspapers with him. The guy was livid that I wouldn’t do something for something that affects maybe a thousand new in the US a year.

I almost posted this with my name, but I want to be known for what I do now, not because I’m a disease. Yes, I hope they come up with a cure…I think they are close because the gene that causes this mutation also causes a few others and the drugs are relatively similar. But god damn if I’m going to put up with some sorry ass son of a bitch that wants to whine about his misfortune day after day ignoring the fact that he’d probably got another 10 to 20 years before he needs to be making out his will, and is too busy dying to live his life.

Ebert is a new hero of mine. I can only hope that if I ever look that bad I’ll happily pose for photos.

Thanks for sharing this. It really put the sh*ty day I was having in perspective. It is amazing how wrapped up in our own stuff we can be. We forgot that there are people out there with real tragedies and triumphs.

Much appreciated.

www.wtfShouldIDo.com

Wow. Roger Ebert is awesome.

@michele

I think it’s admirable to fight something when someone has told you it’s hopeless. The person I was talking to yesterday about our mutual annoying friend, he was diagnosed with a joint disease at 12 and told he would never walk again. Well, he walks, and you’d never know he had a problem.

The issue becomes when you’re spreading your burden on others. You can’t tell me there isn’t a point where soliciting gets annoying. Especially when it’s weeks between when you talk to the person, yet every other day they send a charity email.

I was shocked to hear about Roger but it comes as no surprise to hear what a stand up guy he is!!.....Hats off to you good man…..Chicagoans support you all the way!!.......