You know the kind of story I mean. You must have seen several of them by now, on TV on Larry King Live or Montel, or in your national or local newspaper. If your family is anything like mine they've already started sending you newspaper clippings with editorial additions from said family members along the lines of "See, see, this person has MS and see how happy and successful he/she is!" On a post-it note with a smiley face on it, if you've got one of those families.
Insert rolling eyes emoticon here. 
Or maybe one of these. 
Or maybe even one of these. 
The kind of article I'm talking about usually starts out with a moderately successful person. Maybe somebody famous, maybe somebody accomplished who you would in the ordinary course of life look up to and envy, maybe just an ordinary person with something cool in their life, like they own their own business or something.
At this point, the ordinary reader says "Neat!" or "Damn!", depending on whether their personal philosophy of life leans more towards the light side or the dark side of the force, forgetting for the moment the headline that let them in on the bad news to come.
Then the article takes a more somber note, explaining that the person has MS, and attempting to give a quick explanation, in a few sentences if such a thing is possible, of what that means. It describes in a desultory fashion how MS affects this person's life. One can almost imagine the journalist wrinkling his/her nose in distaste as he or she skates over the difficult issue of describing this poor person's affliction without offending sensibilities of those involved or letting leak the fact that we all like to hear about suffering, especially when it's not our own and we can all go on sitting in our barcaloungers swilling back our carbonated beverage of choice and our crunchy carbohydrate snack of choice, secure in the knowledge that, for once: It's not us! It's not us! It somebody else!
At this point, the ordinary reader says "Damn!" or "Neat!", depending on whether their personal philosophy of life leans more towards the light side or the dark side of the force, remembering suddenly the headline that had momentarily slipped their mind.
Usually the effect that MS has had on the life of our protagonist is not a Good Thing (go figure), but the article almost always goes on to say that MS has not beaten this person down, they are happy and successful and by golly, MS is not going to stop them.
Hence the post-it note with the smiley face from well-meaning relatives.
I'm not saying that this kind of article is completely a Bad Thing. It's good for the newspaper or TV show because it brings in the audience, which helps them move their gadgets or widgets or carbonated beverages or crunchy snack or whatever the Sponsor of the Moment is trying to unload warehouses full of to people who don't even suspect that they need them. I'm maybe even willing to concede that it might also be a Good Thing for people with MS. The "official" MS charity organizations like to raise money for MS research, and that's a Good Thing because someday said research might find a cure, which means I am off the hook and can go back to my old life.
Now, I'm not so skeptical as to believe that a significant fraction of Joe Public is going to leap from the barcalounger and lunge for the checkbook, to write a huge check in support of MS research. (Well, let's just say that if they are, then I have this great bridge in Brooklyn that I'm willing to sell at a loss.) But the cynic in me is quite willing to believe that your average Rich Guy with a stake in his rep with the media is quite willing to cut a check to MS research in the belief that Joe Public will vaguely in the deep recesses of his/her mind recall that MS research is a Good Thing, and hence that the rich guy doing the donating is a Good Guy, and we should therefore buy his gadgets or widgets or carbonated beverages or crunchy snack or whatever.
(Can you hear me, Bill Gates?)
So the article is sowing a seed of understanding in the fallow yet fertile minds of the public, which can be reaped later by the "official" MS charities, which thereby get more money for MS research. The Rich Guy gets his attention, which is quid pro quo, understandable. Dealing with the dark side of the force is perfectly acceptable, so long as we MSers get our cut, in the form of more bucks to hopefully cure us all.
But I get a niggling little doubt in the back of my brain every time I read one of these articles. One of these uplifting articles. One of these damned uplifting articles. I know that I'm not their intended audience, because I already have MS so I know at a gut level what the issues are. But still, they rankle. A teeny, tiny bit.
I keep thinking of all the sons and daughters of well-meaning parents, all the husbands and wives and boyfriends and girlfriends, the lovers, the significant others, the drinking buddies, the employees, the casual laborers, the contractors, and the others, who might have somebody important in their lives look at the article and say "See, this person has MS, and look at how successful they are and how good their attitude is. Why can't you be more like that?"
Not to mention the perfectly sane people with MS who say exactly the same thing to themselves? Why can't I be like that?
Think of the pain and anguish that this has caused people with MS. Sum total, over the quarter million or so of us in the US who have been diagnosed. Not a pretty thought, is it?
Take, for example, this article by the BBC, "Red Planet scientist battles MS". It describes Professor Colin Pillinger, from Britain's Open University, who led the ill-fated Beagle 2 mission to Mars. He has tragically been diagnosed with primary progressive MS, which is a particularly virulent form of MS, at age 62.
Now, please don't get the idea that I'm dissing Professor Pillinger, because I'm not. He's a hero. Just like the most insignificant housespouse who never gets interviewed by the media. What bugs me is the way that his case has been portrayed by the media. (Maybe I'm wrong, maybe he really is as clueless about MS as he sounds, in which case I sincerely hope that he goes clueless to a late grave without Reality smacking him in the face with any more bad news.)
Go ahead, read the article for yourself. If the link is broken, which may happen because the BBC periodically shuffle things around, please google the article to try to track it down, and email me.
Read along with me. Yadda, yadda, yadda. Cool guy. Difficult to walk. Was in charge of Beagle 2, which failed. (Note to self: Doesn't necessarily look good that a guy with MS was in charge of a failed project is it? Makes people with MS look a little iffy, in fact. Never mind. Press on.) Gleeful about crutches because they make a good "bargaining tool". (Good man. That's the spirit.)
Yadda, yadda, yadda. Unfinished business. Not going to quit his job to become an advocate for MS research. (Again, good man. Sound head on his shoulders.)
Then the upbeat stinger at the end. "The show must go on". MS will slow him down, "But it's not going to stop me", he says.
It is to cringe. Here's a guy with primary progressive MS, which has I believe an expected 5 year lifespan attached to it (meaning maybe he's got 4 years left), with a very short, very painful downward spiral associated with it, exacerbated by the fact that he was diagnosed late in life, which as the article admits is "highly unusual" but neglects to add is statistically not a Good Thing. And he says MS will slow him down but not stop him.
I hope he's right, but I can't help thinking that he's whistling in the dark. MS will very probably stop him in his tracks. The dice are loaded against him. Upbeat aphorisms notwithstanding.
I hope I'm wrong in his case. He has my sincere best wishes.
Is anybody in the media willing to get honest with us? MS sucks. That's about the long and the short of it. And I doubt whether you'll see me on Larry King Live attempting to tell it like it is to your friends and family. I doubt any of the drug companies are brave enough to sponsor me on a speaking tour promoting my counterculture vision of MS. So you'll just have to get it from this website.
Maybe it's just as well. But I have over 20 years experience in public speaking. I'm not afraid. Send me an email, Larry. I'm waiting. Are you brave enough?