My MS is Stronger than My Smile

I had much the same response to Michelle Obama's comments.

MS may be strong, but smile are even more powerful.  The ability to smile in the face of such a MonSter is an accomplishment in itself.

I admit you for being able to tell it like it is and not hold up some heroic ideal of the perfect success story of living with MS.  It is the REAL stories of perserverence which I find more inspirational.

And you, my dear, provide that inspiration.  I can see the gleam of your pearly whites all the way over here, in the sunshine, some many miles away.  I hope you feel better soon.

  I find a reason to smile even if it is just because I see my youngest daughter.  Life is hard and MS just makes it even hard to live.  Others don't always care but we do and we can always find a smile form others making change. Don't let that smile fade away.

Yes!  Halleluyah! 

I totally...one hundred percent agree with all that you say here.  I was hoping someone would address this.  It seems to be the thing with chronic mental illness that there is this extra added pressure for us to just accept the diagnosis and trot off with happy smiles pasted on our faces.  As though it is a weakness to admit that sometimes....hello...this disease sucks!  It is difficult.  It is frightening.  But we are supposed to buck up and be good little troopers and be positive about it.

Not that being positive is a bad thing. 

It is not.  It is just that positivity should not be on the list of shoulds.  We have enough shoulds to worry about.

I could go on and on...this is a particular pet peeve of mine.  But I will stop at that.

Excellent article...wonderful writing...and you gotta keep that slogan...that is just perfect.  Keep writing...I am reading!

So what are we going to do about the false or misleading impressions of MS given in some of the media.  I agree that Michelle Obama probably didn't mean to make it sound like MS is no big deal, but unfortunately it could give many people the perception that all you have to do is put on a smile, grab a cane and Presto! you are good to go.  Those speaking for MS in the media have to  get some feedback from us or they will never know  how we feel or how they sound.

Why don't we each write a letter to Michelle Obama and tell her, in a very nice and supportive way, how we feel.  I stress supportive because we don't want her to stop talking about MS, the more people hear about it the more support we might get in Congress for research funding and other laws favorable to our needs.  It is equally important, however, that those who do speak out about MS are giving realistic impressions of the disease, and the only way I know how to help them do that is by providing feedback.

I am going to write a letter, anyone want to join me?  I will send it to the campaign, I guess or through the Obama web site.  Unfortunately she may never see it herself, but if enough letters come in saying the same or similar things then someone will take note and perhaps it will be passed along to her.  They do keep track of the numbers of comments they get on each issue, so we have a chance of being heard if we get enough people to write.

Denise