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Letters to the MonSter Chapter 2:The Etiquette of MS

Dear MonSter,

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                                                                                          multiple sclerosis guide infographic on etiquette dos and donts

I realize that your job is to provide horrible physical anomalies, tamper negatively with the emotional health of your targets, and basically ruin any chance of an encouraging tomorrow; but even the devil has boundaries. 

There are manners when dealing with multiple sclerosis. Society does not always abide by proper etiquette, especially when presented with differences imposed upon people; and, you, my MonSter, definitely provide a difference that requires patience, patience, and more patience.

MS Warriors tolerate you. That is the extent of your power over us. We tolerate your inconveniences.
And while we are tolerating your presence in our lives, we are also forced to do so with the hundreds of assumptions that your baggage brings. 

I learned a long time ago exactly what assuming means, and it is not an attractive image. As the chart above points out, just because I have MS doesn't mean that I am lazy or that I cannot enjoy a full and active life. Living with multiple sclerosis does not necessarily mean that I am wheelchair bound or that I cannot be  part of the working class. I really am not different than my fellow humans. Maybe I require a little special care every now and then, but doesn't everyone?

MS Warrior are filled with pride. It's a normal condition. Although we appreciated little allowances that create big differences in how we approach our day, receiving special privileges is often more hurtful than helpful. My particular attitude here is to just allow me to decipher my own needs without drawing undo attention my way. Where some folks enjoy all eyes upon them, my MS prefers to remain in the shadows.

It's just plain common sense and common manners. So, while you are happy to remind everyone of your existence, this Warrior finds your existence ridiculously annoying. When you laugh at my disability to attend to every day activities, I smirk at your time wasting efforts. Sure, maybe you create barriers at the worst of times, but my fount of faith in positivism never runs dry. 

I know, I know...that little issue with the bathroom is your surprise reminder that you really are in charge, but you evidently haven't noticed that there are times when I just don't care. Did you forget about the extra change of clothes I keep in my car?

Or how about the drop that really acts up when I am tired or over-heated? Yes, that is a nuisance. But, I have figured out that a ten minute "time out" often helps me regain the energy to complete what ever task you decided to interrupt. 

I know that you chortle with glee when I appear a bumbling drunk when in public, but just now that your giddiness is not funny. Therefore, I do my best to avoid reason to allow you to celebrate my discomfort. No, it isn't easy and I don't like it. Yes, it hurts my feelings and makes me cry. So, yes, I suppose you ARE the bully on the block. If that tickles your fancy, then I really do not have room for you in my life.

So, as determined as yo are to make my life miserable, I am equally prepared to give it back ten-fold. 

Bring it on, MonSter. You've met your match here.

Lisa, The Lady with the Cane


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