As I mentioned to the Twitter/Facebook followers I have there would be no review this week as I was on vacation and did not have much time for reading. The one thing I did promise was some original content so here is the first of that content. This one is in regards to Multiple Sclerosis, Jack Osbourne, and celebrity.
So for those wondering, “What is Multiple Sclerosis”, let me try and explain.
If we go with the scientific jargon, MS is an inflammatory disease in which myelin sheaths around axons of the brain and spinal cord are damaged, leading to loss of myelin and scarring. The cause is not clear, but the underlying mechanism is thought to be either destruction by the immune system or failure of the myelin-producing cells. These changes affect the ability of nerve cells to communicate resulting in a wide range of signs and symptoms. (Thank you Wikipedia.)
Me I break it down more like this to people who ask me. I tell them imagine your home entertainment system with your TV, DVD, Satellite, and stereo. When everything is plugged in and working right you have a great experience. However, what would happen if the sound suddenly broke and stopped going to the stereo. The satellite image went out by the sound kept coming. Another is the movie you are playing on the DVD suddenly goes black on the screen but the sound is fine. In other words it’s when the brain stops talking to other parts of the body the right way and anything can go wrong.
So now on to the real reason for this post after that bit of an Education, and yes I did gloss over the possible severity of MS. I did that as I’m not writing this to education on the disease but to share some thoughts that have come from others with the disease, and me.
So why did I go out of my way to name drop Jack Osbourne when I started this post. No I doubt he or a family member will stumble on this and share with their fans. Instead I want to point out some of the perks and perils of when a celebrity comes out and mentions they have a disease such as MS.
Jack was diagnosed at the age of 26 back in 2012 and he had some of the same symptoms I had when diagnosed. He had already changed his life around, gotten married, cleaned up his life and had become a father. He was a young man living the life when he received his diagnosis.
I cannot speak for him but I bet he was at first angry and questioned, “Why me, I’ve overcome so much.” I type this as so many others who have gotten the diagnosis probably have felt the same way. It isn’t easy to hear and some keep the disease hidden from their families and friends. They are afraid to talk about it as they could be seen as a victim for having something not truly understood. They could fear the way some will look at them or ask if they are ok every time they make a misstep.
So this is where it is great that a celebrity comes out and states to the world, “I have Multiple Sclerosis.” It shows that anyone can get this disease and that it isn’t something just the poor or us little people can get. It impacts anyone no matter your circumstances in life, and your wealth.
The celebrity factor helps get the word out about the disease and brings attention to it. Help may come in to help fund research and look for a cure. The same type of help they bring to other diseases like cancer and HIV.
The problem comes when that celebrity starts winning awards. When they are put out there on a pedestal as the way someone with MS should strive to live their life. This is what happened when Jack Osbourne and his mother were honored with the “Medal of Hope” award at the Annual Race to Erase MS Gala that took place in May of 2013, in California. His mother, Sharon, was also co-recipient of the award as the both have been out raising awareness for MS.
When I first read of the award I was conflicted. I wasn’t sure how I felt as this is a celebrity family, with millions of dollars getting an award from a charity event that had attendees with deep pockets. It was as if they were handing the award out to one of their own. A person who had a platform and used it to bring awareness is great. However, why is it we have to see a charity parade another celebrity out in front of us and give them an award?
What really got me was when I read a comment Jack said to E! News.
“And I’m not saying I was trying to be the hero and wave the flag, but I was like, ‘Why don’t more people know about this?”
I wanted to yell when I read that the disease is out there, other celebrities have been diagnosed and deal with it daily too. The reason some people do not know about it is because they don’t care till someone close gets diagnosed. They skip the news about the disease or often cancer and HIV are the diseases of focus.
I looked online and found comments attached to many articles that came out after the ceremony. The articles said congratulations to Jack, but at same time attacked the charity and the celebrity. They wondered why does someone with obvious means get an award for Hope when money is not a question. There are hundreds, if not thousands, of us with MS who live on a budget who inspire people day after day but just living. Why do these charities not seek people out who are long time sufferers and put them on a pedestal with Jack. Show the world that the “little people” deserve just as much attention. I mean some of those at the event were folks like Elton John, Marg Helgenberger, Shemar Moore, and Rod Stewart.
The obvious answer to this is that many do not have the means to get their story out there. If they are lucky maybe a local chapter will highlight their cause and they may get some attention. Others like me may blog about the disease and grab attention and help inspire people.
As for the whole celebrity thing I am using Jack Osbourne and still feel conflicted. Those who watched the Osbourne’s, when it was on television, saw the family had their own demons to overcome. I give Jack all the credit in the world for what he has done with his life and I’m betting it may have prepared him for how he dealt with this MS diagnosis.
In the grand scheme of things I do think the cause to help raise awareness to MS has been helped by the attention brought by celebrities. They help to raise money that hopefully can someday be used for a cure or at least better treatments.
There will always be a gap in finances with those who have money and those who go paycheck to paycheck. People must realize the thing that matters at the end is that no one should give up hope. We should take the support from where we find it and embrace those who share the challenges that MS brings. So whoever you are there is no reason to be jealous of someone who may have more money or a better circumstance as we all have our challenges and must face them.
So although I am conflicted by the way we hold some celebrities up on a pedestal I am glad they help bring awareness. I however wish at times someone would look deeper and focus on those who get by and enjoy life with what they have while dealing with the challenges of MS. Either way it is something many suffer from and some keep it deeply private. The key is no matter who you are people care and each new voice to bring awareness is a good voice.
Just a note these are all my own opinions and in no way do I try to pretend to step into the mind of others. I just am going with what I get from reading posts online from others. If this offends I ask you contact me via email so we can talk about things. You’ll find contact information on my about me page.