I'd been wondering if I should do something special for post #1000 and then this topic came up.
I've often been asked what my connection to thalassemia is and if I am a thal myself. No, I am not a thal and no one in my family is thal. Until five years ago, my only contact with thal was that I employed a part time worker who is a thal minor. I own a comic book store in upstate New York in the US. Lisa Cammilleri, who was the founder of the Thalassemia Patients and Friends site on MSN was a comic book collector and even came to my store with her father when she was in her teens, but it wasn't until 2002 that her friend, Angela, who is also my friend, brought her into my store and we met. Angela had told me a little about Lisa and I had also been to Lisa's personal site from a link from Angela's Sarah McLachlan site, and I had learned some about Lisa and a little about thalassemia. When I met Lisa we hit it off immediately and became best friends almost overnight. It turned out we had grown up in the same area and gone to the same high school (in fact, her mom was also a graduate of the same school two years before me), and also had much in common with our hospital horror stories. It wasn't long before we were calling each other little sister and big brother.
The longer I knew Lisa, the more I tried to learn about thal. Lisa was impressed by my efforts to understand thal and invited me to join her MSN group and come to the next scheduled chat. At that chat I met some people who are still friends today, including some dear friends in the Maldives, Maako and Shaneez. At the second chat I was to also meet Shilpa, who would have a great influence on my understanding of what living the life of a thal was like, both in social and medical contexts. When I was invited to the Maldives for International Thalassemia Day in 2006, and Miaki was unable to attend, it was Shilpa who I recommended to take Miaki's place. As the Maldivian thals will attest, it was a good decision. The combination of my knowledge of thal along with my positive attitude and encouragement and Shilpa's real life experience in dealing with thal and chelation during her lifetime, had a fantastic effect on the Maldivian thals. Our visit proved to be very successful and we are often asked by the patients to make a return visit.
When I first joined, the group was underactive and one member expressed some great frustration in a post about the lack of help she found. When I saw that post I felt that someone needed to make an attempt to answer posts or find someone who could answer them. I thought that since I wasn't a thal who had the hassle of doing desferal for 10-12 hours each night, that maybe I would be a good candidate to fill that need, especially since I am always online anyway, due to the retail industry's reliance on the internet.
Lisa was very happy that I took the time to make friends in her group and that I was making attempts to answer questions and stimulate participation from the members, so she made me assistant manager of the group. As Lisa's health worsened from hepatitis, she relied on me to take care of her group. When her health failed and she was hospitalized, I would visit every day and she would ask me one thing. How many new members? We reached 200 members on MSN when she was in the hospital and she was elated. In 2006, Danielle and I moved the group to a private site so that we could bring a much improved site to our members. Lisa would be so happy to see how large her group has grown today.
Lisa counted on her big brother, Andy man, to take care of her group. This group is Lisa's legacy and it is only because of her that we are here. I have worked hard to preserve Lisa's legacy and make it grow and thrive. I have tried to and continue to try to learn everything I can about thalassemia and all related issues. I read study after study online and every time someone asks a question, I go hunting for an answer. I have a long standing interest in the body's needs for vitamins and minerals and have been able to incorporate that knowledge into understanding the nutritional needs of thals. I have a knack for searching the internet and understanding the material I find. I have attended overseas conferences where I have listened to lectures from the top thal doctors and researchers in the world, and have also been a guest in the Maldives for thal day.
Why do I do it? When Lisa died, I could've walked away. My connection to thal was gone. Lisa counted on me and this is her legacy. I couldn't leave that. I couldn't leave the friends I made. I couldn't leave what seems to be a calling. I got involved because there was a need for someone and that need still exists. As Canadian Family so aptly put it one time, we all long for the day that I am not needed and am put out of work. I stay involved because this is the best thing I have done in my life and each time someone tells me I helped, I know it's what I should be doing. I think Lisa would agree.