TAG Conference

Well this last week has been very busy. On Friday of last week I went to Disney land in Anaheim, California for the Thalassemia Action Group conference. It was one of the best experiences of my life. I mean that in all sincerity. The people I met at this conference have forever changed my life and my view. Every single patient and family member of a patient that I met is completely awe inspiring. It makes me feel so great to see people with thal living normal fulfilling lives. I would be lying if I didn’t say some of the weekend was difficult. It was, I had this empty feeling in my heart the whole weekend something was missing and that something was Ian. He has made the biggest impact on my life out of anyone I have ever met. We shared everything for so long and whenever there is a big event it always makes me miss him more. Especially this event, I think that if Ian had gotten more involved with TAG he may have had an easier time with compliance. I think conferences like this from the time children are adolescents to adulthood will be some of the most helpful experiences. Everyone at the conference is there for one another and I think that is the most important thing about TAG and CAF. The overwhelming sense of friendship shared by everyone is huge and I think that will always be what saves a thal patient the most. More than transfusions, chelating, and any other surgeries, friendship with other patients is what makes all the difference. I will be forever changed by knowing these people and I hope I can make the conference next year as well. A study Ian participated in (Pain in Thalassemia Patients) was presented at the conference. I had to take a break after that it was too much to handle all at once. But then I met more and more people and all I could think about was how far they have come and it cheered me up. I think I met Ian for a reason every day I believe we were sent to each other. We needed to show each other what it truly was to be loved by someone; Ian needed me to be happy so that his last few years were full of love and not emotional pain. And Ian needed to show me what it was to be appreciated. We were supposed to meet, and I was supposed to do this (at least that’s what Ian said, those were his words not mine). I am supposed to help all these people. It’s a lot to take sometimes, it’s a tremendous feeling.  After I got back to NYC Ian’s family came to visit me in the city. We went to all my favorite places; strawberry fields, Rockefeller center. We also visited Times Square Canal Street and Chelsea for a wonderful dinner at Tellos. It’s been six months now that I’ve had to live without Ian. It’s a weird month marker that first six months. I still wake up and don’t want to get out of bed and just don’t feel like living anymore. But then there are also some days that I wake up and feel good about helping others and that’s what pushes me through the day. As long as I feel that I am helping others I can keep going.