You gain a sense of camaraderie with other people suffering from ALS, and their caregivers.
Texts, email, calls, and messages via social media go back and forth behind the scenes. How are you? What meds are you on now? Have you had your feeding tube inserted yet? How's your breathing? How's your weight? How are you emotionally? How are you coping with X change?
Sharing the journey binds you together. Even if your ALS is progressing at different speeds (which it does), you share common paths.
Which means that when friends and people you correspond with start to experience failing health, you feel it, too. Maybe not the physical symptoms, but certainly emotionally. That sinking feeling in your stomach.
So as other sufferers falter and fall you feel your numbers dwindling. You look around and see the crowd thinning out.
Then you realize that this fight you've been in will end in a proverbial charge of the light brigade: surrounded by canon on all sides, and engulfed in shot and shell fire. You don't lose hope, but you see that your horse is saddled and you know there's no return from the mouth of hell.
Here's to those climbing in to the saddle.
The heroes ride out through the Sunlight Gate
ReplyDeleteAnd out of the sunset return
I have no idea how they spend their day
With a selfless act, or a grandstand play
But high behind them the sky will burn
In the glittering hour of return
The heroes ride out in unbroken ranks
But with gaps in their number come back
I have no idea how they lose their men
To some new threat, or the same again
But they talk a long while near the weapon stack
In the clattering hour they come back
The heroes return through the Sunset Gate
But their faces are never the same
I have no idea why their eyes go cold
And the young among them already look old
But high behind them the sky's aflame
In the flickering hour of their fame
Hi,Tony.
ReplyDeleteIt's already been a hellish journey,bud. As soon as you realised the journey you were on,you knew how hard it would be.
You've stuck with it through everything,spent as much time as possible with your loved ones. That's the important thing,Tony. The Big Picture.
Kept us informed along the way-and heightened our awareness considerably. That's important too,tbh. You've fought this all the way,had your victories.
Keep on keeping on,mate. Keep fighting. Keep looking for victories.
HH