22 November 2008

Empty and Black

Since someone was kind enough to respond to a post, I'll answer that first. The basic gist was that this person knew four people that have MS that had mono at an early age and wanted to know if I did. The answer to that is no. It is an interesting statistic though. If there is any correlation, it's not surprising. Autoimmune diseases are ones that put the immune system into overdrive and start causing the body to attack itself. Anything can trigger it or nothing can.

Yes, it's been another long silence since my last entry, but what is there really to say? One day is a mirror image of the last. I wake up, I have to get slowly out of bed or else I'll fall right over. My ankles and knees are so stiff that I look like Frankenstein's monster walking. I go to work and sit in my little cube a shadow of who I used to be. Oh, the flippant remark makes its presence known every now and again, but the quip a second person is missing. It's hard to be what you once were or even attempt to be that person when it's a struggle. Sitting to long makes things stiff again. I come home and and plant me butt down. Every day I tell myself that I need to work out. I need to make myself work out. Then despondency sets in: What good will it do? I can't do cardio without turning into a board. It sucks and I hate this.

I'm lumping in the myelitis and the MS because right now they are one in the same. Obviously when somebody is first diagnosed with something, they read as much as they can about it. It's only natural. I came across one article that was hard to believe at the time and then other articles just affirm what I already know.

MS is an internal disease. There's no outward sighs even though the effects can be seen as a result. When you say you are exhausted it doesn't look like it from the outside. When you say your legs hurt more than normal, nobody can see it. If somebody knows you really well, they can tell by the look on your face with every step you take. But who really pays any attention?

The other thing was how people react to you when you tell them that you have an incurable disease. Reactions can run the gambit: an over-abundance of attention, ignoring the fact entirely and treating you as normal, to total isolation.

I've seen it all. My close friends treat me normally but work around the bad days and put up with it. They let me do what I can and keep an eye on me. Parents treat me like parents: every little thing is monumental. Others ignore it completely and say things could always be worse or look at this person and see what they are going through. Others run screaming. Others give the appearance of concern, but you know they are just putting forth the facade that mean well. Selfish or Selfless.

02 November 2008



WHEN I see birches bend to left and right

Across the line of straighter darker trees,

I like to think some boy's been swinging them.

But swinging doesn't bend them down to stay.

Ice-storms do that. Often you must have seen them

Loaded with ice a sunny winter morning

After a rain. They click upon themselves

As the breeze rises, and turn many-colored

As the stir cracks and crazes their enamel.

Soon the sun's warmth makes them shed crystal shells

Shattering and avalanching on the snow-crust—

Such heaps of broken glass to sweep away

You'd think the inner dome of heaven had fallen.

They are dragged to the withered bracken by the load,

And they seem not to break; though once they are bowed

So low for long, they never right themselves:

You may see their trunks arching in the woods

Years afterwards, trailing their leaves on the ground

Like girls on hands and knees that throw their hair

Before them over their heads to dry in the sun.

But I was going to say when Truth broke in

With all her matter-of-fact about the ice-storm

(Now am I free to be poetical?)

I should prefer to have some boy bend them

As he went out and in to fetch the cows—

Some boy too far from town to learn baseball,

Whose only play was what he found himself,

Summer or winter, and could play alone.

One by one he subdued his father's trees

By riding them down over and over again

Until he took the stiffness out of them,

And not one but hung limp, not one was left

For him to conquer. He learned all there was

To learn about not launching out too soon

And so not carrying the tree away

Clear to the ground. He always kept his poise

To the top branches, climbing carefully

With the same pains you use to fill a cup

Up to the brim, and even above the brim.

Then he flung outward, feet first, with a swish,

Kicking his way down through the air to the ground.

So was I once myself a swinger of birches;

And so I dream of going back to be.

It's when I'm weary of considerations,

And life is too much like a pathless wood

Where your face burns and tickles with the cobwebs

Broken across it, and one eye is weeping

From a twig's having lashed across it open.

I'd like to get away from earth awhile

And then come back to it and begin over.

May no fate wilfully misunderstand me

And half grant what I wish and snatch me away

Not to return. Earth's the right place for love:

I don't know where it's likely to go better.

I'd like to go by climbing a birch tree,

And climb black branches up a snow-white trunk

Toward heaven, till the tree could bear no more,

But dipped its top and set me down again.

That would be good both going and coming back.

One could do worse than be a swinger of birches.
-Robert Frost

01 November 2008

Another Long While

Just like the title says it's been a while. Not much has changed. . . things suck. I still have the tingles, the tightness, all that other stuff. So . . . is it the myelitis or is it the MS? Part of me says the myelitis but the other part says MS. Not that it's an impossibility, but it just seems strange that I would get an exacerbation in the same spot that if have inflammation from the myelitis. It's not as bad as when I first went to the neurologist, but it's close.

I'm just in a down turn. My motivation to do anything is non-existent. I haven't been working out. I always go through cycles but it's just been harder this time to get back into it.

It's been a while since I've done a "My favorite singer/band" so hears another one: Charlotte Church.

She's kinda of faded into anonymity in this country, but she's still popular in Great Britain. She started out as a wee little girl with a huge soprano voice. She's done mostly opera and classical, but she did come out with a pop album three years ago. Listening to it, one would never know it was her. She has or had her own talk show, had her fair share of run-ins with the press, but she's come through it all. She has bigger balls than some men. She's 22 now, mother to one with another on the way.