Posted by Todd (63.10.27.224) on July 25, 1999 at 15:00:13:
How do you describe uniqueness? The past few days I’ve been in an environment unlike any which I have previously even imagined. As is true of most of us, I’ve never met another clusterhead. In the midst of a visit from the demon, I’ve often railed at the fates for singling me out for this dance with insanity. Every doctor I’ve ever seen for this has claimed to have other CH patients, but I pretty much took that to be a condescending attempt to make me feel less alone.
Now I know there are others, and the feelings that certainty fosters are incredible and irreplaceable. I’ve just met five clusterheads, four supporters and two precious little supporters-in-training. I was never fully comfortable of making this journey. I don’t ‘visit’ well, being a homebody who is usually uncomfortable in other’s homes. A last minute desire to hide in the back of the plane and continue on to wherever it was going after leaving Rochester was replaced with a sense of complete acceptance within seconds of meeting Dave and Elaine—a feeling soon to be expanded upon meeting Bob, Judy, Laurie, Heather, Barb, Cathy and Peter.
What did we do? We watched, as the demon attacked three friends and dragged them off to the dance. We agonized, individually and silently, ever watchful to avoid meaningless offers of assistance, each of us all too aware of the infuriating futility of such expressions. And we rejoiced each time, for yet again the demon lost. He may have forced a few dances, but he went home alone from each one. To quote drummer, F**k you, a$$hole. As long as we’re here to risk the next dance, WE win.
We talked, hugged, laughed, discussed, argued, agreed and debated. We watched tapes of Dave’s television interviews, and transferred them over to the computer so that he can share them with all of us.
What did we ‘accomplish’? In terms of O.U.C.H. and the convention, almost nothing, if decisions, plans or paperwork are the measure. The gathering did create, for each of us and each of you who has faith, a sense of realness to O.U.C.H. It will happen. It will come to be. Precisely what it will look like, how it will operate, what it will do, is still unknown. Rather like being a parent for all of us. The birth of the child is but the beginning of an adventure of exploration, examination, growth and learning experience. The result can’t be known for years yet to come, but which amongst us would sacrifice our child’s younger years out of mere impatience to see the adult?
What did we learn? That we truly are not alone. Forget the occasional board squabbles, the perennial differences of opinion and the challenge of creating something like O.U.C.H. almost completely on-line. These people are real. They care. They are committed, passionate and dedicated to fighting the demon.
I wonder what it is about clusterheads that makes them so compassionate? What compelled Dave to make countless trips to the airport, usually only to wait for a delayed arrival? How is it that everyone knew that “How was your night?” carried a meaning understood only to ‘us’, and that an answer of “Great!” called for ear to ear smiles, while an answer of “Not so good” required nothing more than the look that says “I understand. I’m here if you need me, but I will never go down that path uninvited.”
Speaking strictly for myself, I learned that the demon plays almost nicely with me, in comparison to the rotten tricks he plays on some of my friends. That makes me both grateful and scared. Grateful for the obvious reasons. Scared that I too am travelling down the road so many other have blazoned before me and that my turn as the demon’s favorite dance partner may yet await. Yet the anger I feel isn’t for me. I am irate at the games he plays with my friends. I’m incensed at the noxious effects the drugs they need have on their bodies and lives. I’m outraged that one of them was offered aspirin and asked why she was crying as she tried to deal with the demon’s visit in a crowded, hectic airport. Mostly, however, I’m inspired by the strength of character, courage, compassion and compelling will to not merely survive but to LIVE so profoundly apparent in each of these people. I cannot think of any other words powerful enough to convince each of you who have yet to actually meet another clusterhead to pick up your telephone and make it happen. I can promise that once you begin this journey, you will never wish to retract that first step.
A few personal notes are necessary before closing.
Dave, thank you. Please stop worrying about your two beautiful, healthy, happy, well-loved children. Far from ever being harmed by having a Daddy who isn’t ‘normal’, they, like Heather, will grow into wonderful adults, strengthened by the experience of a father who deals with the demon, and a mother who stands beside him in frustratingly silent support.
Thank you, Laurie, for everything. We clusterheads can’t imagine the courage it takes to be a supporter. To open your home to a gaggle of us and seamlessly perform the role of hostess while taking care of Megan and Sarah was an accomplishment from which Martha Stewart could learn several lessons.
DJ, you can stop worrying about OUR site. Just as the bridge, once completed, no longer belongs to the architects, engineers and construction crews who brought it into existence, ‘your’ site now belongs to each and every person who uses it to cross the chasm of solitude and enter the land of the clusterheads. Thanks for the highway, dude. I used to be lonely on the other side.