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Behind the Scenes Series
"They Don't Understand"
by Sue Ellen Dickinson


I remember it well.....just like it was yesterday. But actually, it happened many years ago....... when I was first diagnosed with Multiple Sclerosis

I didn't know anything about MS back then. But all that would change in the blink of an eye... and  it did.... right along with everything else in my life. In fact, my life as I knew it,  would never be the same again.

Once, I was athletic, even a graceful person some said, blithe, with boundless energy that never ran dry, and I was out to take the world by storm. I was unstoppable. I had big dreams, and the sky was the limit......or so I thought.

But MS has a mind of it's own I'd soon discover, and as a thief in the night, it robs it's victims of their dreams, goals, aspirations and entire futures, dissolving them into a frigid, acidic bath of lab tests, pharmaceuticals and doctors' visits that, like water dripping on stone, delivered the crystal clear message over time that life as I'd known it...... was over.

And then along came the every day embarrassments of things like trying to hold a teacup politely still on its' saucer, as my quivering hand lost control, nearly spilling hot tea on my guests' lap. Or, perhaps it was the label they gave me....'accident prone', that wore away my self esteem and confidence. 'Accident prone'......hmmmm....that's a long way from athletic and graceful.   And this only marked the beginning of what would eventually bring on even more devastating symptoms that would literally cripple me and destroy my life.

What was happening to me, and where was the understanding from others I so desperately needed at the time?

How could this be? And who could I turn to for comfort and understanding?  

Family, friends? Well, yes, maybe, but....I would make the cruel and harsh discovery that tolerance and genuine understanding for a victim of MS were in very short supply..... and as for answers? Frankly, there were none.....at least not back then.

The fact that I didn't "look" sick didn't help my case much either. Nobody understood why I had to take naps in the afternoon. Was I just plain lazy now, or what?   

No one understood why I couldn't go out to dinner with them at night after hours, or why I mentioned that I was in pain. How could I be in pain, they'd say, because afterall, I 'looked so good'!. 

And then, of course, there was the ever-increasing clumsiness and developing awkward movements that awarded me the label of ......'accident prone.' And, like I said, this was only the beginning of what was to come, and what I would eventually learn about human nature.

I've come to believe that dismissive attitudes and downright denial about what happens to MS sufferers is just as epidemic as the devastating symptoms themselves that accompany this monster disease. It's a cruel hoax of sorts, that human behavior tends to toss into the mix, shifting focus and sometimes even blaming the victim, all the while ignoring the true villain and it's supreme reign of  destructive mayhem over peoples' lives.

This of course, doesn't apply to everyone with MS, ... their family, friends or caregivers. Of course not. But such was the case for me, and I've received literally hundreds of emails telling of similar cases just like this from other MS sufferers, frantic and desperate ...reaching out for just simple, basic understanding from those around them as to what's really happening to their lives, and how they can effectively communicate their distress.

So what is the answer? Why don't they understand?

Well....I don't know that there is a clear cut answer.  Because when we hear one of the most basic of human needs, an outcry for genuine understanding from our fellow man, we call upon our empathy and compassion. And that is something that can't be taught.   It can't be mimicked or borrowed from another emotion. 

Compassion lies in the very depths of each individual heart, as part of the human condition. For some it may remain dormant. But for others, it soars to the surface.... a firestorm of human kindness and love for our fellow man, rising up through the ashes of misunderstanding and ignorance........breaking through those barriers with streams of blinding light put there to soothe us, spreading across  the broad horizon of  love and hope.

One thing I can say for sure.   I've come to learn that if you don't have compassion, you can't have love. And if you don't have love..... you have nothing at all.

Until next time,

Sue Ellen


About the Author
This article was written by Sue Ellen Dickinson who has fully recovered from her symptoms of secondary progressive Multiple Sclerosis, and today leads a perfectly normal life. In an effort to share the information of how she did it with other MS sufferers worldwide, she has written a book “No More MS, My Journey Back To Life”. This inspiring book offers the reader hope and inspiration, and can be found at her website http://www.nomorems.com .


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