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
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?
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.
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.