After an overnight flight and virtually no sleep, we were not sure how alert we would be or how much we could contribute. In addition, we had been told to not prepare any formal talk. We of course, had talked about some of the significant issues concerning the Maldivian thals, but no formal talks were planned by either of us. As it turned out, we would be giving talks.
We were taken to SHE headquarters later that first morning and introduced to everyone, and shortly after were taken to an assembly room where many of the older thals and many parents were gathered. We sat down at a table and were introduced and then I was told to start things off. At that point I realized that indeed, I was expected to give a talk. I haven't talked in public since I was a teenager and then I was completely petrified by it, so I had no idea what to expect of myself.
Well, I've known many of these people for two or three years online and they are my good friends and I am very familiar with the issues they face. I began to talk and decided the best thing would be just to speak to them as a friend. I told them how happy I was to be there and meet everyone and thanked them for their long time friendship which has always been so warming to me and was a big factor in my ongoing efforts to help thals around the world. I thanked Maako for being the very first person from our group to talk to me on MSN and how welcome that had made me feel. Maako is a wonderful young woman who is very involved with SHE, and also an inspiration and role model to her fellow thals in Maldives. I talked to them about the importance of complying with their treatment and why they should care to be alive. I talked about how they were very aware of the importance of praying and nurturing the soul, but that God has also given us our bodies that we are to treat as the temple of God and that means we have to do our best to take care of it, and that means complying with their chelation too.
I looked around the room from time to time to see how people were reacting and was constantly encouraged by a smiling Muiz who let me know things were
. I kept seeing my smiling friends and realized I was getting through to them. I continued to speak about how much treatment has changed over the years and that they were in a much better position these days because most of their treatment is provided to them for free. I also talked about the ongoing developments in bone marrow transplants, including the newer expereince of doing mother to child transplants at the center in Italy. I told them about the research into a gene therapy cure for thalassemia. I told them they must keep hope because things are changing so fast that we have no idea what new treatment or cure may come next, and that if they don't comply today, they won't be here tomorrow for the next advances. I could see that the message was being paid to with much attention. The more I saw this, the more I was encouraged to speak.
While I talked, Shilpa made a few notes on my pad. I've known Shilpa for a few years and know she is an intelligent person, but she also was not expecting a formal talk, so I didn't know what to expect. What I saw was amazing! Shilpa talked to them from her years of experience, using both desferal and L1 and talked both about the practical side of usage, giving them many tips on how to use desferal and needles and also the proper dosage of L1 and how to start taking it. She also spoke about how lucky they were to get desferal for free, as in India desferal is a luxury item that most can't afford. I saw that every member of the audience was hanging on every word she spoke. The rapport she established with that talk has only gotten stronger both during our visit and afterwards as we both continue to talk to so many of our friends regularly. There is nothing better than the voice of experience and Shilpa's experience growing up with so little treatment available and no hope of long term survival. By comparison, thals today have it much easier and the older thals in this group will verify that. Meeting Shilpa was a great experience for everyone and gave them a lot of hope to meet a thal older than any thal in Maldives has ever been.
Since that day of the talk I have spoken to Maako and told her I had not prepared for a formal talk and she told me it was all for the better, because it meant I had to speak from my heart and that meant so much more to everyone. I think that Zuhair, the CEO of SHE knew what he was doing when he told me not to prepare a formal talk. Thanks Zuhair. I am grateful for your confidence in me and for the opportunity to help my dear friends in the Maldives.