A Letter to "Normals"

Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and its effects, and of those that think they know; many are actually misinformed.

In the spirit of informing those who wish to understand......
These are the things that I would like you to understand about me before you judge me....


- Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.


-Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to.

Please understand that being able to stand for ten minutes doesn't necessarily mean that I can stand up for twenty minutes ,or an hour, and just because I manage to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what MS does to you.


-Please understand that MS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.


-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.


Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously MS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, MS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.


-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it cant be put off of forgotten just because I'm out for the day (or whatever). MS does not forgive.
-If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with MS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with MS, if something worked we would know.


-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you.
...and, as much as it's possible, I need you to understand me.

Re: Death Seems Better

A letter was written about the hardships of life being coiled upon a young woman, the fire of the devil burning her while the MonSter raged at her back the enter time. She sot solace in the MSuport group, and this was a beautifully written response I had to share:





I'm so very sorry to hear that all of this crap is coming down on you at once. I know it is a very difficult time, but I want you to know something:






MS Patients are without a doubt the STRONGEST people you will ever come across. They have to deal with so much, the light and extremes of things, more than others are exposed to. MS has no pre-determined course to the disease, like cancer, aids, etc... MS will not kill you. It does not end your life. What it does do is offer us
the "unexpected" on a daily basis, it's like the suspenseful part of a movie that we don't want to watch, but have to.

What we have to do, is to not lose everything about ourselves, but to modify/change who we are. We don't have to stop doing the things we love to do, but we do have to learn how to do them in a new/different way that is compatible with the limitations set forth by our condition. It doesn't "end" things all together, we just have to
learn how to modify our daily lives to accommodate MS.

MS wants to get us down and keep us down. But even if, for example, we are used to running 5 miles a day, and have to reduce it down to 1 mile a day, We still win, because we are still not down. We are not letting MS win by modifying what we do. Just changing "how" you do things will allow you to keep doing things that you love to do. MS might make some things more difficult, but that's just making you smarter and stronger.

I understand these thoughts you are having. I had them too during my first year after being diagnosed, but then I learned that our lives don't end because of MS, just making changes to accommodate will allow us to still persevere and beat the attempts by this disease to "keep" us down.

YOU CAN DO THIS, YOU CAN MAKE IT THROUGH THIS. WE ARE HERE FOR YOU, HERE TO HELP YOU THROUGH THIS. WE ARE HERE TO LISTEN TO YOU, SHARE WITH YOU, BE YOUR FRIEND AND YOUR NEW EXTENDED FAMILY. IF YOU EVER FEEL ALONE IN THE WORLD BECAUSE OF MS, OR FEEL THAT THINGS ARE JUST TOO MUCH, PLEASE REMEMBER US, AND THAT WE ARE ALL HERE, WAITING TO
SHARE, SUPPORT, LISTEN AND HELP EACH OTHER THROUGH THIS.

Now please do me a favor and read the following web page, and remember that when the day is over, We are still here for you.

http://www.metanoia .org/suicide/

http://www.metanoia .org/suicide/ spagebw.htm

You can make it through this. We need you.

Take care and God Bless.

Evita

I wanted to add this insert because these songs from Evita have been playing in my head, the melodies at least, whenever I get down and lonely (which I am not right now, no worries). I just love how moving the music and lyrics are. Tim Rice really speaks to me through her words in the last bit of the first song and the rest of the others. They are just so...**sigh** well, you get what I'm saying. It's beautiful stuff, and I had to share it. Just lovely. As much as it makes me sad when I'm down, it makes me think when I'm in a good place. And think in a good way. It moves me. The love that they show and share, after everything, ends up being so beautiful and pure. He means his love for her, and he really means to stick by her, no matter what. And she tries to be strong... it's just so moving. **sigh** I leave it at that.




12. WALTZ FOR EVA AND CHE

CHE
Tell me before I waltz out of your life
Before turning my back on the past
Forgive my impertinent behavior
But how long do you think this pantomime can last?
Tell me before I ride off in the sunset
There's one thing I never got clear
How can you claim you're our savior
When those who oppose you
Are stepped on, or cut up, or simply disappear?

EVA
Tell me before you get onto your bus
Before joining the forgotten brigade
How can one person like me, say,
Alter the time-honored way the game is played?
Tell me before you get onto your high horse
Just what you expect me to do
I don't care what the bourgeoisie say
I'm not in business for them but to give all my
descamisados
A magical moment or two

CHE and EVA
There is evil, ever around, fundamental
System of government quite incidental

EVA
So what are my chances
Of honest advances?
I'd say low
Better to win
By admitting my sin
Than to lose with a halo

CHE
Tell me before I seek worthier pastures
And thereby restore self-esteem
How can you be so short-sighted
To look never further than this week or next week
To have no impossible dream?

EVA
Allow me to help you slink off to the sidelines
I'll mark your ado with three cheers
But first tell me who'd be delighted

If I said I'd take on the
The world's greatest problems
>From war to pollution?
No hope of solution
Even if I lived for one hundred years

CHE and EVA
There is evil, ever around, fundamental
System of government quite incidental

EVA
So go, if you're able
To somewhere unstable
And stay there
Whip up your hate
In some tottering state
But not here, dear
Is that clear, dear?

Oh what I'd give for a hundred years!
But the physical interferes
Every day more--O my Creator!
What is the good of the strongest heart
In a body that's falling apart?
A serious flaw--I hope You know that

13. Your Little Body's Slowly Breaking Down

PERON
Your little body's slowly breaking down
You're losing speed, you're losing strength--not style--
that goes on
Flourishing forever, but your eyes, your smile
Do not have the sparkle of your fantastic past
If you climb one more mountain it could be your last

EVA
I'm not that ill--bad moments come but they go
Some days are fine, some a little bit harder
But that doesn't mean
We should give up our dream
Have you ever seen
Me defeated?
Don't you forget what I've been through and yet
I'm still standing.

PERON
Eva, you are dying.

EVA
So what happens now?
Where am I going to?

PERON
Don't ask anymore.

14. You Must Love Me

EVA
Where do we go from here?
This isn't where we intended to be.
We had it all
You believed in me
I believed in you

Certainties disappear
What do we do for our dream to survive
How do we keep all our passions alive
As we used to do?

Deep in my heart I'm concealing
Things that I'm longing to say
Scared to confess what I'm feeling
Frightened you'll slip away
You must love me
You must love me

Why are you at my side?
How can I be any use to now?
Give me a chance and I'll let you see how
Nothing has changed.

Deep in my heart I'm concealing
Things that I'm longing to say
Scared to confess what I'm feeling
Frightened you'll slip away
You must love me (repeat three times)


15. EVA'S FINAL BROADCAST

EVA
The actress hasn't learned the lines you'd like to hear.
She's sad for her country.
Sad to be defeated by her own weak body.

(a microphone is switched on--she is now on the air)

CROWD
Evita! Evita! Evita!

EVA
I want to tell the people of Argentina
I've decided I should decline
All the honors and titles you've pressed me to take
For I'm contented--let me simply go on
As the woman who brings her people to the heart of
Peron!

Don't cry for me Argentina
The truth is I shall not leave you
Though it may get harder
For you to see me
I'm Argentina
And always will be

Have I said too much? There's nothing more I can think
of to say to you
But all you have to do is look at me to know that every
word is true

16. LATIN CHANT


CHE
She had her moments--she had some style
The best show in town was the crowd
Outside the Casa Rosada crying, "Eva Peron"
But that's all gone now--

17. LAMENT

(In her last hours, images, people and events from EVA's
life flow through her mind, while the grief of the nation
knows no bounds)

EVA
The choice was mine and mine completely
I could have any prize that I desired
I could burn with the splendor of the brightest fire
Or else--or else I could choose time
Remember I was very young then
And a year was forever and a day
So what use could fifty, sixty, seventy be?
I saw the lights and I was on my way

And how I lived! How they shone!
But how soon the lights were gone!

(The moment EVA dies, EMBALMERS move in to
preserve her fragile body)

CHE
The choice was your's and no one else's
You can cry for a body in despair
Hang your head because she is no longer there
To shine, or dazzle, or betray.
How she lived, how she shined
But how soon the lights were gone


EMBALMERS
Eyes, hair, face, image
All must be preserved
Still life displayed forever
No less than she deserved

Hands Out

It's weird about my fingers, they're no longer the rubber-glove numb. They're stuff, loss of sensational. But they still have a bit of tingle. I'm assuming it's a delayed feeling. They can't stop shaking and they bumble over the keys on the keyboard, despite knowing them very well. I really have to pound on the keys to make sure I'm really pressing them, and pressing backspace a lot because I keep messing up. The hands have been like this for a while now... so I'm hoping they get better soon. It's mainly kept to the finger tips and the pinkie and ring fingers down through the palm, mainly stronger loss of feeling in the right hand. Which is kind of cool, considering most of the stuff happens to me on the left side.
Speaking of which my left eye is not completely better. I think it is, and then it'll be like wearing a contact sometimes and the lens will shift... but it's my own eye! Sometimes it itches so much I feel like I'm scratching it right out of it's socket. Other times it gets only a little blurry, and ever so often when I check and things are a bit off (I know my right eye is doing major compensation for it right now), my vision is off... in both going grayscale and burriness of sight.
Also, my speech slurs easily if I don't watch it. I think my brain is dragging ass.