aBigSAM, Sweets, and Lyric at Heppofest, 10/2000

When Viv aka “Lyric” first mentioned me writing a story for this page, I had not a clue what to say being a non-hepper. Viv reassured me to speak as a caretaker or loved one of a hepper. Well, then it suddenly became easier, as I have an entire “Heppo family” here.

I first became aware of HCV from a long time acquaintance that found she had HCV. Through her and some other friends I had the opportunity to meet the most amazing man I had ever met on the Internet. His name was Joe aka “ Slick” and he was a young man with HCV in endstage liver disease awaiting transplant. Joe was one of the kindest, loving men I have ever met, in spite of his failing health he always had a great sense of humor. I was only blessed with 4 months of knowing Joe before he died in August 1999 of hemorrhage following his long awaited transplant.

For the first time it hit me that people die from this disease. People were suffering and battling this mighty dragon called HCV. I am a nurse and had basic (very minimal) knowledge of HCV. I knew it was a chronic/fatal disease causing cirrhosis of the liver and was blood borne.

After Joe’s death I felt a big chunk of emptiness and shock that he was gone forever. I sought out the site he went to, and found the message boards at Web MD. I was amazed at the large group of folks I had never met or heard of grieving for Joe also. One person in particular caught my attention, as she seemed to hold the group together in their grief. I sent her an email offering my condolences and she responded so graciously. Her name was “Lyric”. She invited me to a new web site called “ A Big SAM’s Hep C Center founded by Sam and herself.

When I first started coming I mainly read the message boards and would occasionally post. My HCV lesson had just begun!!! I was stunned by all the “lay” persons that knew more about this disease than I did as a member of the medical profession. I learned the methods of transmission, how the virus multiplies and mutates, forms and methods of treatment, along with their terrible side effects. Slowly as I learned more about this disease I had a host of names of this disease….AbigSam…Lyric…Lil Runt…Spydercolt…Bear…Gibby…Diamondgirl… Livermann …and the list goes on.

I slowly filtered into chat, not comfortable in the beginning and worried that I didn’t belong as a non-hepper. But I was so readily reassured by Lyric, and soon I couldn’t help but become part of this loving family. I soon knew all these names and the personalities that accompanied them. I became close to these Internet friends and wanted to find ways to make them feel better either with a kind word, a message of hope, a greeting card, or a funny joke.

It became important to me to learn as much as I could. To my great dismay I have been appalled at the ignorance of the medical community and Joe Cool Public. The difficulty of insurance coverage for treatment and or transplant. The lack of government assistance in education, financial assistance in the local, state or national governments. Even the lack of compassion for our US Vets who have been exposed to this virus while serving their country. Learning that this in epidemic with millions of folks unaware the have this disease and may innocently be exposing others. It isn’t hard to be caught up in the needs of heppers and trying to find ways to help. You may already have a loved one with this sleeping dragon waiting silently to suck away their livelihood and quality of life.

It wasn’t long and I was given the honorary title of “Heppo Angel” which I hold dear and with great fondness. This beckoned me to reach out more and try to comfort and reassure those who come with needs to this web site.

Then I had the privilege and pleasure of being a co-sponsor and Hostess of Washington Hepfest 2000. It was such a gratifying experience to see these Internet friends meet and share real time hugs and smooches!!! It was totally amazing to find that Most of these folks were exactly as I pictured them and their personalities loving and coming together as one.

Then in October 2000 I was able to attend another Heppofest. There I got to reinforce the friendships I had already made and make new “real” time friends. There is nothing like the fellowship, love and caring of a bunch of Heppos coming together. The perfect recipe for world peace if we could clone it. I hope one day you will have the opportunity to attend one and feel love as you never have before.

I know not why…but I feel I have been destined to be here. I try to help and offer hope as best I can, but still feel this destiny has not yet been fulfilled. So I wait for whatever it may be.

I hope that everyone that reads this will learn acceptance of all the different lifestyles and belief systems that bring us together as people and human beings with needs.

You don’t have to be a hepper to understand or have compassion for a hepper. We are a family with only the goal of the greater good.

And … THANK YOU JOE …for bringing me to Lyric and all your friends here!!!

EDUCATION IS THE KEY!!!

Click here to return to the member stories list