Weakness of the Body & Strength of the Spirit

Sometimes my arms are so weak it hurts to lift my fork to my mouth to eat.
Sometimes I feel too weak to take any more pills, helpful or not.
Sometimes I'm too weak to face another day, another night, even another hour.
Sometimes I'm so weak it's hard to smile. I didn't know a body could be so weak and survive.

Inside my spirit fights to smile, even if it is just on the inside.
My spirit fights to find something to laugh about.
It fights to find something to focus on, besides my weakness.
My spirit holds me together when my body lets me down.

Sometimes I have to take a bath because I can't stand up long enough to take a shower. Sometimes I'm so weak talking with a cherished loved one is exhausting.
Sometimes I'm too weak to cry.
Sometimes reading takes too much out of me.

Somewhere deep inside my spirit has an eternal hope for recovery.
My spirit looks to my children for laughter and purpose.
It searches for the good God has blessed me with.
My spirit holds my weak body together.
Body & soul has new meaning for me.
Without my spirit, my gift from God there would be no tomorrow.
There would be no hope, no love, no need.
With my spirit God helps me see that even though life can be a constant struggle, there are moments that make the days, nights, and hours worth the fight.

© Jacki Ingalls, 1997 JackiMcI@aol.com

THE SONG OF THE SUICIDAL SUFFERER


Kevin Swift

Well, here I am Lord, speaking to you from my own personal cross; my
words are indistinct because I am turned-in, face pressed up against the
rough wood. I am blinded and crushed by misery.
All this is just too much for me.
I cannot cope with it and yet I continue to cope with it.
I cannot bear it and yet I continue to bear it.
I no longer expect to recover. I desperately want to believe that I might at
least experience even the most infinitesimal signs of improvement but I
cannot.
Hope is dead.
I know that time has stopped.
No clock is ticking towards my healing or
my release and my only comfort - physical death,
is too far off to be hoped for.
I am ill enough to long for death but just well enough for my body to
cling involuntarily to life>
I want to die. All fear of death is gone;
I crave it as my only hope.
Part of me has already died and gone to Hell but that was a half-death
which left enough of me alive and sentient and aware to be flooded with
this unbearable agony of body, mind and spirit.
How did I come to this place?
How did it all come about? Perhaps I am undergoing some terrible punishment but I have no notion of what dreadful sin I have committed to deserve this. I do not feel your loving arms beneath me, sustaining me; I feel only a free-fall into a bottomless pit. Even to fall into the flames of Hell would be preferable. I regret all my past and yet long to return to it even with all its ordinary human pain. I see the years since I fell ill as one interminable cycle of misery, exhaustion, failure, despair and quiet, impotent anger which terrifies me with its intensity. I used to fear and hate my old depressions but I would welcome a return to the worst of these if You would just guarantee some release from the crushing, unbearable burden of this illness. Past, present, future; all ruined. I never was an optimist but now all I see is an obscene rainbow of greys and black and browns. I am an infection, contaminating other people. In my loneliness and despair and misery I crave the company of others but because they tax me, tire me, challenge me, I shun them - even those closest to me. Hopeless and powerless I reject their innocent love and care and interest and the walls of my cell contract. My misery is infectious and solitary confinement or better still, death would mean new life, joy and release for those who love me. I disgust myself for staying alive. Endurance is a foul habit which I cannot break. I envy everyone: the well, the young, the successful but I envy above all those with terminal illness. Blessed are the terminally ill because there will be an end to their suffering. They have the end in sight. They have the hope of oblivion. I give all this to You; I give it to You Lord and You can do what You will with it. I cannot cope, I cannot cope, I cannot cope; but I do. I go on and on and on.....! I curse You Lord for allowing this illness to strike me down and to keep me in its grip. You are silent. You are silent Lord. You say nothing but I think I see a deep sadness in your eyes as you listen. Perhaps it's enough that you have listened... and understood. There are no easy answers, no instant delivery. Sometimes Love is silent. So, I shall go on then shall I.? Until you see fit to heal me or take me. I give it all into your bloody hands and receive in return..... A certain peace. Kevin Swift, ME sufferer for 11 years and ME counsellor, based on his own worst moments and what other sufferers have shared with him. July 1996

I'm Scared

I'm scared because my life has changed,

And not for the better it seems,

I've got a chronic disease called CFIDS,

And I've had to rethink all of my future dreams.

I've got to adjust to living a new kind of life,

One that right now, I'm not real happy about,

And when I think that I've just got it down,

The damn disease turns the things I relied on, inside out.

One of things you can count on with this stupid disease,

Is that you can never count on anything being the same,

You really never know from one day to the next,

Whether you'll have any kind of life, or a brain.

I know that this illness changes our lives,

In many different and varied ways,

We are no longer the people that we thought we were,

We must re-create ourselves for each day.

It steals our sex drives and our energy,

Makes us moody and achy and scared,

Makes us fat and forgetful and unpleasant sometimes,

Makes us not want to risk, not to dare.

To do things we wouldn't have thought twice about,

When we were so healthy before,

But now that we're not, it's a different world,

We can't often get out of the door.

It makes us so tired - chronic fatigue, the name says,

But the word fatigue can't even begin to describe,

How difficult it can be for us to do anything at all,

When you feel the way that we do inside.

It takes our relationships - tests them to the core,

And if they can't bend, they unfortunately break,

Whether friends, relatives, or our most significant ones,

They either adapt or give us our greatest heartaches.

Cause to not be believed, or not understood,

By those we love and care for hurts most of all,

We need their support and their help now more than ever,

That's where this disease takes one of its worst tolls.

It's hard to be dependent when you've led an active life,

As most of us did before becoming ill,

And to rely on others for many of our daily needs,

Of all the medications we take, seems the bitterest pill.

Some people are convinced that we're all just faking it,

Though if any of them had walked in our shoes,

And had to give up their lives as they now know them,

I don't think its something anyone would willingly choose.

They think staying home, and not working or going to school,

Is quite enjoyable, but what they don't seem to see,

Is that if its not a choice, but something you're forced into,

It's not nearly as attractive as they think it might be.

Many of us have had to give up our work, school, or careers,

Or modified our participation in dramatic and difficult ways,

An important part of our previous identities,

We have to learn who we are without them - hard to say.

Cause our society places value and status on who and what you are,

By your work or the things that you've achieved,

If you don't have those to judge with, you're considered a lazy bum,

Hard to find worth just being yourself - in just being me.

And with all of these changes this disease brings to our lives,

Money becomes something that's often quite dear,

So while we're fighting to carve out a new kind of life for ourselves,

Keeping the wolf from the door is something major to fear.

Those of us who are alone, or have become so since we've been ill,

Have, I think, the most difficult time of it all,

We've nobody to rely on when we need help the most,

We must look to ourselves - we've no one to call.

.But lest you think that the whole illness thing is totally bad,

There are some good things to be gained,

Time to stop and smell the flowers and the coffee in life,

And new and deeper relationships which can be obtained.

Instead of the superficial ones, that most everyone one has,

We aren't able to sustain those anymore,

You get what you see, there's not much pretense these days,

But those who truly love you will surely endure.

We have time for details, we used to not see,

Not having had the leisure to notice before,

But now time is one of the things that we have the most of,

So we must learn new sources of pleasure, for sure.

So yes, I'm really scared about how my life is changing,

In spite of my efforts to keep hold of the old,

It doesn't work anymore, and its been taken from me,

And no denial or fantasy thoughts will make it any less bold.

My reality is that I'm ill and I must learn to cope,

With what my life has now presently become,

And let go of the past, and what I wish it could be,

And just deal with the present -one day and one hour by one.

By Nora Kamelhair

Copyright 1966
nkam@digital.net

Today is the first day of the rest of my life!

The Fog

I'm so very tired -
but I just can't sleep.
I try to think - but it's all too deep.
The future's uncertain,
and time moves so fast -
by the time I'm in it,
the present's the past.
But, the past is gone -
so where am I ?
I'm stuck in this fog -
and every breath is a sigh...

© Ronn Breidenbach, 1997