Posted by Dave Emond (205.188.199.171) on June 04, 2001 at 12:30:29:
I'm sure just about everyone here has read the description Capra wrote about a CH attack on the OUCH website. This interested me very much, to the point I had to get the book and find out more. I figured if he suffered from CH, then so did his family and friends. And, if we were to be able to find out just who these people were, maybe we could find support from them?
I'm still researching trying to find ways to contact these people ... who knows? In his book, Capra follows up on that description with thoughts that have entered my mind at times and maybe many of yours? Although we know it's not true, there are many times we can't help these thoughts. I felt I should share some of this with you, and if you like, I could do some follow ups.
The following are the next few paragraphs following his attack:
"What was all that pain about? In bed, in the dark, just before we leave the conscious world, we are alone, very alone. Is falling asleep a rehearsal for death, and waking up a personal resurrection? Are dreams out-of-focus visions of life hereafter? I don't know. But I do know that just before sleep I shed the armor of pretense and lie naked, unsure, frightened. I add up the day's score-it's against me. I replay the day's events in slow motion-I missed most of my assignments. Many of us reach for a pill or a prayer to help us through the night. But ever since I was a child prayer had been a problem. To me, most prayers were selfish. "O Lord, help ME get a job ... Help MY children ... Save MY soul-and to hell with all the others!" ("Three coins in a fountain ... make it MINE, make it MINE!") Gimme, gimme, God. So I made up a childish prayer that included everybody: " Lord help us all to be good and kind, and give us peace in our house and in all other houses." From constant repetition the words had become as meaningless and ritualistic as om, mani, padne, hum on prayer wheels.
But the night the monstrous bird sank ghostly talons into my head, the words welled up from deep within me; real; a soul cry. And when prayer is for real it hangs out the door latch to your innards, and conscience pulls the latch, enters, and lets you have it. What was that pain all about? It's the Judas pain. You welched; compromised; sold out."
I don't know about others, but I've found myself in the same frame of mindset as Capra at times when dealing with CH. The old, "What did I do to deserve this?" or or some form of guilt or punishment has caused my CH. We know this isn't true, but how many times during a bad, long attack have we not thought the same? Capra thought he brought this on himself, as do many who first experience clusters, or even for years after. Just as many doctors would like to blame CH on stress, anxieity, diet, season changes, etc.
Personally, I still think there IS an answer to CH out there somewhere, and certainly has nothing to do with punishment, stress or whatever. It's a neurological disorder that needs research by the medical world. They're not going to do anything though until we're heard, so we've got to find any and every avenue to be heard. Could be a long shot, but I'm sure there are still many friends and family of Frank Capra's that might be willing to help, and in the position to help. Anyone wanting to try to find these people and how to reach them, I could use some help ;)
Anyway, thought you all might find this as interesting as I did, and thought I'd share it with you. There are many other references to his cluster attacks, his reactions and those of his doctor and family. If interested, I could post more.
PFDAN's
Dave