Sunday, November 29, 2009

Celebrity MS : Does It Help Us ?

Last night I watched the movie "Hillary and Jackie" 1998, a film about the cellist Jackie du Pre, who's career was cut short and died from progressive MS.

This film was a box office hit and received several Academy Award nominations.

Du Pre's rapid decline from MS and her debilitating symptoms were difficult for me to watch. Questions kept popping up in my mind "Does a film like this and the high profile celebrity of the person, do anything to educate people about MS?" "Is it because I am sensitive about my own MS that I was disturbed by this movie?" " Does being a celebrity, having an illness like MS, and going public with it, benefit us regular folks with MS or does it do more harm?" "Is any of this really the point?" "Films are meant to be enjoyed and not teach, unless they are documentaries?"

So many questions. I guess because no matter how much we try to inform people about MS, the majority have no clue what it is. My city has a small population 500,000. Every year there is an MS walk. One of our hospitals is a leader in MS research, yet most of the people who live here no nothing about MS or what they do know is so filled with prejudice and misconception.

So I guess I'm asking the big question. Does a film like Hillary and Jackie, help educate us concerning MS, or does it scare the bee geeburrs out of us and cause harm?

Du Pre had a rare, extreme, form of MS and how do we know that she didn't have other conditions that caused her death? Many MS suffers have additional serious illnesses. Just because you have MS doesn't mean you are safe from other health problems. It's not like God says: "OK you have MS so I'll give you a break". Maybe because her decline was so rapid they never did diagnose any other condition and just assumed it was the MS.

Imagine finding out you have MS, something you know very little about. You or a member of your family watches a movie like this and/or Montel Williams spreading so much misinformation about MS.

Not a very good start is it?

Bad enough you have journeyed through the maze of tests, and doctors, and diagnosis,
(if you are lucky) and misdiagnosis (most likely) and then your first experience with high profile individuals with MS, are a women who declines and dies, and a guy who tells you to drink lots of juice.

The celebrity world is not one I'm keen on. I could care less what they wear, where they go, and don't care about their views on anything. I'm just wondering if it is a good thing to show high profile individuals with an illness or does it do harm ?

I apologize for my sloppy editing. Typing this takes me so long due to my ever weakening typing skills. I'm simply too tired to polish it up.


Lori said...

Living in Canada, it is estimated that 1 in every 2 people knows someone with MS. Since my diagnosis I've heard a lot of "Oh my (insert relationship here) has/d MS."

This has both helped and harmed me. Helped in that most people get what the basics of the condition are, but the harm has cut both ways.

My boss at the time of my diagnosis thought that I was either drunk or faking my symptoms because her best friend has MS and she still skis and wears heels, but was surprised that I didn't have any pain.

My grandmother knew a woman in the 1950s who was diagnosed with MS and died less than a year later. Since I live 3000 miles from her and she hasn't seen me in 3 years she thinks that I am lying to her that I'm doing well and getting back to working, etc. because Betty Brooks was so sick and died at the same point in time that I am right now.

So I don't think that movies or Montel Williams do much harm because I don't think that many people make the connection. I still have acquaintances who think I have Muscular Dystrophy for crying out loud! I think if people want to identify me with something they saw they will ask me about it, which opens up the chance for a "teaching moment".

To paraphrase Rick Blaine in Casablanca:

If they think about MS at all, they probably would have misconceptions, but since they don't think about it, it's probably not an issue.

suejan said...

I actually met Jacqueline Du Pre she was in wheelchair with black nurse. Read Peter & Wolf while Russian husband played piano [he had other family in France]

Lisa said...

I understand what you are saying! But, when you see what Ali and Michael J. Fox have done for Parkinson's disease I tend to believe it all helps. I think awareness is key!!

Rei said...

I think in some cases, films (if done right) can bring about mass awareness of an illness or whatever the focus may be. Then again, Hollywood likes to take things to extremes and often does more harm than good... I haven't seen the film, so I can't really say either way.

"Films are meant to be enjoyed and not teach, unless they are documentaries?"

I don't think that's true. Many films can teach us things, documentary or not. Sometimes you just have to go beyond the mainstream to find them.

Taxingwoman said...

Thanks for all your comments!

Lori just wondering where all these Canadians are that know about Ms I haven't met any. I get those faking it comments too.

Anonymous said...

For years, not many people knew I had MS. When they found out (from one way or another), the negative comments were rampant -everything from "you don't look like you have MS" to "I don't believe it".

In the last ten years, my physical appearance has changed noticably and you'd think I was on my deathbed the way some people treat me.

When Teri Garr came out with her book about her MS, she touched on this in her book, also saying she kept her dx under wraps because she would not be able to get work in films.

Now that she has been "out" she gets what she calls "pity work" but can't get insured on films. She she has to provide her own in order to work.

In her case, I think writing about her MS experiences has brought alot of helpful information to light for the public to know that maybe they didn't know before and I think alot of people have learned from her book.

In that vein, I think celebrity has its values.

Non-celebrity folks (like you and me) can only contribute through our writings in blogs and other venues and in talking to people in an effort to enlighten them that we are not all alike, no two people with MS are alike, and some MS'er celebrity (i.e. Montel) only want to sell books to keep their income going because they can no longer be insured in entertainment world to keep working regularly.

Those MS'er celebrity interviews (i.e. Montel, etc.) are what is hard for me to watch and disturb me greatly. You just want to shake them or yell at them that we are not all like them.

I think what many people do forget is that not all MS is the same, no two people experience exactly the same symptoms in exactly the same way, and that not all medicines and/or treatments work for everyone.

So when a film comes along portraying the worse of the worst in MS, we have to do damage control with family members and put out the correct information so they don't think we are gonna die in a year.

End of soap box. Sorry about that.

Taxingwoman said...

Hi! Anne
Your soapbox comments are welcome and right on!
Thank You

Diane J Standiford said...

I ask myself this question often. I think if USA had a big loved star like Mylie Cyrus (I have no kids and only recently found out she was Hannah Montana LOL) or Jennifer Aniston, OPRAH, ELLEN(though they are both too old really) SOMEBODY everyone loves...or one of Bill gates or Warren Buffett's kids/grandkids---THEN, maybe. I saw that movie when it first came out and it DID disturb me. (and my loved ones) You are right though, most people do NOT KNOW MS, including in the nedical community.