“MAN SEEKING OTHER PV PATIENTS TO CHAT ONLINE. WILLING TO BRING MODEM TO SHARE. MEET ME AT AMERICAN ONLINE.”
When I was first diagnosed with Polycythemia Vera, there was big gaping hole inside of me. No one in my inner circle could grasp what was going on inside my head. I had been stripped of my future and all hope. All of a sudden I was an Alien on a Planet I used to call home. Up had become down and down was now up. I had become a stranger among friends in search of Planet Normal.
While everyone around me felt connected and their life was as it was, mine had been stolen from me. There were times I would think to myself. “If I could meet just one person like me we could connect, relate and shoot the breeze.” A sense of normalcy would return to my life.” What I could not know then was that normal, as I once knew it, would never return.
As I walked the halls at Stanford waiting for my test results I would observe the paintings on the walls provide free by donors. I felt like Charlie Bucket from Charlie and the Chocolate Factory. He in search of the golden ticket, me in search of a fellow PV comrade in arms.
Every time I had a phlebotomy I would look over at other patients who were hooked up to IV’s with a sense of hope that in this group of folks I would find the one person who had PV. I would often ease drop on conversations between nurses, patients and family members. I kept waiting to hear the words “phlebotomy in room five.” Or “I am taking Hydrea,” it never came.
THE ARRIVAL OF THE WORLD WIDE WEB:
THE PERFECT PLACE TO MEET
In early 1993 I purchased my first Mac and hooked up a 56 baud modem and dug through my desk draws filled with a few of those America Online free welcome kits. AOL used to mail out millions of them to consumers. Sometimes they were metallic silver in color other times some bright pink fluorescent colors that could not be missed from as far as 100 yards away.
In the beginning, like most of the millions on AOL I would hang out in the chat rooms trying to figure out how the technology worked. This led to conversations or online chats and messaging. I remember my first on line message “What are you wearing? “At first I was not sure why anyone would want to know what I was wearing. I thought to myself Levi 501’s, Converse sneakers and a brown t-shirt. What a strange question I thought. However I quickly found out what all these things meant.
To me it was amazing to be able to talk with people from all over the World. Then one day, and I can’t remember for the life of me how it happened or who introduced me to it, I found a chat group for MPD Patients. At the time I didn’t even know what MPD meant.
As I recall there were a total of five people in this group plus myself. There was David, Robert Tollen, Joyce Niblack and the kindness most soulful person I ever met in the MPD or MPN Chat world, Alice M. Wahl. Alice was such a wonderfully magical and inspiring human. She made me laugh when I was sad. And helped me through some of my more difficult times.
There is something about being lost and finding a group of people you connect with that goes beyond words. When you find the right chat community you click with it becomes a brotherhood. Like a police force, fire department or group of soldiers. This brotherhood that develops among strangers is as if we are all serving together in an MPN/MPD War. We all have each others backs and closeness develops that is quite unique.
I think the year was either 1995 or 1996 but I was a scheduled speaker at a technology event in Arlington, VA. I mentioned this to the group and right away Alice messaged me. “I will be greatly and forever insulted with you Jeremy Smith if you do not make time for dinner with us while you are in town as you are going to be close by. ” You never say No to Alice.
Next month I will be taking you to the Twilight Zone and through the sad break up of our lovely group. The emergence of what we now call MPD/MPN Lists and the battle for list supremacy between Joyce Niblack and Robert Tollen.