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A Painful Connection

Disabled counselor uses Net to ease pain
By Christopher J. Kelly TRIBUNE STAFF WRITER
article posted January 3, 2000

The machine greets him at 3 a.m.
Click. Whooosh ... Click. Whooosh ...
The sound is monotonous, constant but comforting. The pump pulls and pushes to a clockwork cadence as it feeds the painkiller through the line that ends in his chest.
Click. Whooosh ... Click. Whooosh ...

His body objects with jagged bolts barely dulled by the drug. "Stay in bed," the pain warns, trying to keep him under the covers, to let his disease have its way this cold barely morning.
He guesses most people would relent, but he knows he's not most people. As bad as he feels inside, there's a world of hurt out there.
So Joey Lee rises.
It will be 6:30 before his throbbing limbs will want to move him around his South Scranton apartment, but he will already have been on the job for two hours by then. By 7 this evening, the pain will punch him out.
Time to call it a day.
Confined to his house by reflex sympathetic dystrophy (RSD), a chronic pain disorder rooted in a work-related injury that left him permanently disabled, Joey uses a 15-inch power window to touch the outside world and the fast friends he finds there.
"I have two choices," he says of the decision he makes each morning. "I can lay down and let this thing take me away, or I can get up and get on the damned computer and fight."
A relentless contender, he fights with a personal computer, a keyboard and an open, outstretched hand.
Joey helps people.
In 1992, he was a counselor at the East Mountain campus of Friendship House, a family services center where he specialized in helping troubled youths. On Feb. 18, 1992, Joey says a brawl erupted and he -- 5-foot-11 and 130 pounds -- got caught in the melee.
"A 300-pound kid came down on my legs," he remembers with a sad grin. Click. Whooosh ... Click. Whooosh.
Crippled in both knees, he was treated with a steroid he says led to the development of Avascular Necrosis. The same condition that cut short the career of baseball and football great Bo Jackson, the disease cuts off blood flow to the bone marrow, choking it to death.
An attempt to replace the dead bone with grafts mined from his hips yielded nothing but years of excruciating rehabilitation, myriad examinations by baffled and frustrated doctors and, finally, a diagnosis of RSD (Reflex Sympathetic Dystrophy).
The disease is progressive. It has infiltrated his entire body, and now reaches for his face with spindly fingers of heat that rake his cheeks. If not for the painkiller pumped directly into the right atrium of his heart 24 hours a day, the pain would drive him mad.
But he gets by, and he'll tell you there are people who have it a lot worse than he does.
People like Jeremy S., the Canadian boy who succumbed to cancer last summer. Joey counseled him through the last months of his life, sharing the pain and the fear, the uncertainty and, finally, the inevitable.
"Hi, Joey," the boy wrote from his deathbed. "I'm sorry for not writing you like I promised, though in my heart I have always been thinking of you. We sort of connected from the start and I've always admired you (you probably know that).
"I know I don't have long before I'm set free of this body and can fly in my spirit and when I do I'll come visit you. When your time comes (in many, many years when you're old and gray), I'll be waiting to give you your induction host training.
"Don't ever stop helping people and being positive about life because that's the reason for living. Thanks for always being my friend. I love you and always will."
There have been others, like the emotionally and socially isolated Russian man who wanted to kill himself for being gay.
Joey understood. Talked to him. Found others he could talk to.
The man changed his mind, and now he has too many friends to ever leave them behind by his own hand.
They all meet at Joey's place, a Web site he created at, a network on the World Wide Web that houses Joey's Email
Now residing at Yahoo! Clubs, which you can access at:
Yahoo! Groups and look for The Men4Men Club! - A Club for Gay, Bi & Curious Guys.

A Club geared primarily to provide a *Safe Haven* for Gay, Bi and "Curious" Men (Only). This Group is like NO other "Gay/Bi" oriented Club, as it is for Discussions, Support, and Personal Stories, -NOT- Cyber-Sex
*note* - The Info about the Club has been edited from the original article - *end note*
It is also Joey's primary connection to the outside world.
To an outsider, it may not seem like much. To him, it is everything.
"I have too much to be thankful for," he says as the pain pump grinds on. "That's something I learned when I started talking to people out there.
"The computer may be my whole outlet to the outside world, but I've used it to help so many more people than I could have if none of this had happened to me.
"I have been able to help people in every part of the world, and through them, I've gained back a lot of the strength I lost when I got sick. It restored my self-worth and gave me a reason to get up in the morning.
"It gave me the chance to take back my life."

This story was originally printed on January 3rd, 2000 in the Scranton Times Tribune.

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To learn more about RSD/CRPS, I have created a comprehensive ''What is RSD'' page from the National Neurological Association, just go to What is RSD?

I have also created a ever-growing list of Resources and Information pertaining to RSD and Chronic Pain. Just click here.

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