One of the biggest MS discussions in the past week has been Jack Osbourne’s diagnosis with the disease. Personally, I’ve run through a wave of emotions and thoughts as I’ve been processing the coverage of his diagnosis.
Sympathy – Jack’s diagnosis came after experiencing decreased vision in one eye, which ultimately became so bad that he had no central vision in his right eye for a period of time. I understand all too well what he experienced, since that’s the symptom that led to my diagnosis. The condition is called optic neuritis, which means that there is a lesion on the optic nerve that impacts vision in the affected eye. When it happened to me, I did some online research. The good news? For a large percentage of optic neuritis sufferers, the vision returns to almost as good as it was before the episode. The bad news? A majority of optic neuritis sufferers either already have MS or will be diagnosed with it between 5-10 years of that episode. I can only imagine the fear, confusion, and other emotions he was dealing with, based on what I dealt with myself.
Helplessness – Jack’s mother, Sharon, has been expressing so many of the same things that my mom did when I was diagnosed. Had she done/not done something during pregnancy/childrearing that could have prevented the MS? It was painful watching my parents dealing with their helplessness as their daughter dealt with something that they couldn’t fix.
Frustration – There are so many sources of frustration. When you’re diagnosed with MS, you’re suddenly and vehemently reminded that you’re not in control, that any moment your own body can turn on you. There are ways to try and improve your situation, but there are no guarantees. For me, one of the biggest frustrations is the misinformation and sensationalism about MS. Is it an incurable disease? Yes. Is it debilitating to many of those striken by it? Yes.
Is it fatal? NO. But that doesn’t stop magazines like People Magazine from putting titillating headlines on its cover (“I won’t let my son die”) to feed the media frenzy. A public figure’s diagnosis can increase public awareness, but it can spread misinformation. If you follow Jack Osbourne on Twitter, you’ll see that he’s as annoyed with this media tendency as I am.
Hope – Yes, MS is currently incurable. Yes, right now there are limited options for treating the disease. But there are a lot more options now than there were when I was diagnosed 10 years ago, and there are a lot more in development and testing. While the current picture for MS is definitely not sunshine and roses, the end of the tunnel is definitely brighter than it has been.
Will there be a cure for MS in my lifetime? Don’t know. And not sure that’s the right thing to be looking for right now. I keep thinking back to a speech by David Lander (Squiggy from “Laverne and Shirley”) at an MS conference about 10 years ago. There are so many different experiences with MS. Would a cure help many or just a few? What would it mean to “my” MS? But I don’t want the talk about whether or not MS can be cured to interfere with the efforts underway to address MS symptoms and relapses.
So what do I have to say about all of the media frenzy surrounding Jack Osbourne as he deals with this diagnosis? Godspeed, my colleague. We didn’t want to be put on this journey together, but we are. Don’t let this illness get in the way of the joys with your loving family (especially that sweet new baby you have).
