Friday, February 24, 2006

But You Look So Good !

- Author unknown

When I woke up this morning Just like I always do,
I found that this was different
I was really feeling blue.
I know there's nothing I can do
To make myself feel fine.
I'll simply try the best I can
To work and not to whine.
My torment in my body
No one can understand.
They look at me, I'm looking good
I must be feeling grand.
To look so hale and hearty,
I must be feeling great.
The way my body treats me
They cannot estimate.
For one to look so healthy,
With good colour and a smile,
They think I'd like to have some fun
And maybe walk a mile.

They cannot know what's going on
Inside my body now.
I may look strong and healthy
And could even lift a cow.
But that's not how it is with me,
I struggle to get dressed
My buttons give me lots of time
To really get depressed.
I cannot do the simple things
An eight year old can do.
I can't do up my button
Or even tie my shoe.
Frustration is my daily pal
Stays with me all my life.
Especially when I try to eat
And cut things with my knife.
Sometimes this makes me cranky,
Cause all of this frustration
Is more than I can bear.
I do not want to be a crank
Or even a complainer.
What's going on,
You cannot know,
Even if you had a trainer.
Try getting dressed with mitts on.
It'll make you feel lots older;
Or walk a hundred yards or so,
Your leg tied to a boulder.
Try talking to your friends about
The things you do and see.
Especially when you can't speak right
As "fifty" comes out "free".
You know the things you want to say
They just don't seem to come.
Good thing it's only now and then
Or they'd all think you're dumb.
But that's not hard to live with,
As friends, they all know you.
And when the times get really tough,
They're there to see you through.

It's really not demeaning
On someone to depend,
For most of us can find someone
Who'll help us as a friend.
Some understand the turmoil
We go through day by day;
They help us when we need it
And get us on our way.
Those friends do understand MS
And what it does to us.
But some cannot understand
Why so often we do fuss.
About the feeling we'll explode
Or half your body's numb,
Or that your brain's not up to par
And you feel really dumb.
Who cares you ran the hundred
In seven seconds flat.
Your ball days too are over,
You can't even hold a bat.

So you lose your temper
Every now and then!
It really doesn't matter much
Cause you don't even know when.
That's what happens with MS.
You're full of ups and downs.
But people always notice that
You've got more smiles than frowns
You think you cannot handle it,
You're wrong, you're wrong my friend.
We, all of us, can handle it,
So let us not pretend.
Of course it's not a fun disease,
But name me one that is.
And I'm sure to give you full marks
For being such a whiz.
It's hard when on the inside
You feel less than you should.
But look upon the bright side,
Hey! You're really
looking good!

Thursday, February 23, 2006

Who are the people with Multiple Sclerosis? - By Virginia Sanchez

We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out to the Church or Temple every weekend; we are your peers; we are human beings.

We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.

Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.

Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"

Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."

We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You....

Tuesday, February 21, 2006


Chronic means forever.
Chronic means no days off.
Chronic means you arise and drift off with it.
Chronic means all of your family, friends, co-workers, neighbors & acquaintances know you through it and it through you.
Chronic means you can't leave it, you can't escape it, you can't fool it, you can't remove it, you can't forget it, you can't buy or sell it, you can't give it away,
Chronic means it is a part of you.
You can hate it, despise it, revile it, ignore it, and it remains part you.
You can fight it, go to Germany for it, deamalgam it, sting, pharese, and oxygenate it, magnetize it, oil, low-fat and deglutinize it, consult stars and swallow algae for it, imprison your free radicals for it.
And the next day it remains.........
Chronic is forever.
© Ira Lipsky

Saturday, February 18, 2006

MS and Fear-The Terrorist Within by Ira Lipsky

I see similarities between the fears of the victims of deliberate terrorism, and the fears I face everyday. Like them I am in the grasp of a terrorist. My terrorist is a disease not a person, yet they both act in similar ways. For example:

-I never know when an attack is going to occur.
-I never know what the extent of the damage will be, or how long captivity will last.
-There is no reason or logic I can appeal to, my captor doesn't care.
-People not in my situation can only offer support, they cannot identify with me.
-My family and friends are frightened, frustrated, and angry because they cannot rescue me.
-My fate is in the hands of bureaucrats and specialists, who while looking at the "big picture" tend to forget that I am an important part of my own small picture.
-My fear can make me act irrationally, and I will grasp at any straw to gain freedom.

However, people with MS differ in a life saving way from the victims of terrorism, because we KNOW that a terrorist is lurking within. That knowledge gives us a sense of power and potency which can be enlightening and protective. As much as we want to be like everyone else, and take good health for granted, we can't because our bodies are held hostage. But no chain ever made can bind the psyche, our minds and spirits are free. This is not a distinction to be taken lightly. Throughout history people have survived against seemingly overwhelming physical odds, because their minds and spirits were strong. A commitment to self-worth and survival can endure relentless bombardment.

We will not succumb to the terrorist within as long as we believe in ourselves and maintain our dignity. With a firm sense of self and the support of our families and friends, we may know fear, but don't have to be dominated by it. Living on the edge as every person with multiple sclerosis does, we must learn how to balance, when to move, and when to let life's winds blow on by.

© Ira Lipsky