It is so amazing to sit here at my computer and see all of you people with thal or with it in your family.
I was diagnosed at 15. That is almost 35 years ago. In this time, I have heard of two other people with thalassemia and never met anyone with it. Being a part of this site has given me, FOR THE VERY FIRST TIME IN MY LIFE other people who understand! What a beautiful gift.
It feels important that I comment on some of what I have read here. To begin, I completely understand all of these psychological feelings. There is no way I can say I am stronger than anyone else, or have something different, but, I feel I am different in many ways, and maybe if I share that, one little piece might help someone.
Narenda- The YouTube you shared should be required viewing by every person in this world. It is one of the finest examples I have ever seen of a positive and 'normal' attitude.
Dori- 6 years of thereapy!!!! Wow. You have spent a very long time 'trying to get better'. How exciting to be at the end of that part of your journey. Always remember the effort you had to put into therapy in the future, and put that same effort into the things that mean the most to you.
And Sharmin, how my heart breaks for your son. I have been out of school for 30 years, and can still remember it all. School was a nightmare. I was always sick and being a part of anything was nearly impossible because you never knew when I was going to feel well or not. This definitely excluded me from any kind of team activity because I could not be counted on. I was even once expelled from school for unexcused absence and I was in the hospital!!!!!!
Everyone is different, and I know what has worked for me will not work for everyone, but here are some of the things that made my life 'normal' and HAPPY.
1- READ, READ, READ- Books, they take so little energy and they take you wherever you want to go and allow you to do whatever you want to do in life.
2- My parents had me really active in Camp Fire Girls. We met once a week, and making that one day a week one I could have fun was the priority in life. School was 5 days, hard to make it the same kind of goal. Camp Fire, at one day a week, was DOABLE!
3- Although it came naturally, my parents also made sure I was able to pursue creative/artistic endeavors. I have always been a member of some kind of artistic community. I find there are a lot of people who are 'limited' in these communities. Personally, I write children's books, make dollhouse miniatures, miniature teddy bears, dolls and dollclothes. I knit, crochet, sew, embroider, and many other such things. NO, I am not a super artist, I will never get rich, but............................. I can work on my crafting WHEN I FEEL LIKE IT, and trust me, I feel like it a lot considering there is always some kind of project calling my name.
4- Always remember, NO ONE IS NORMAL!!!!! I do not care what they say, how they look or how they act. No one is normal. Every single person in this world has something to 'deal with'. NORMAL IS BORING!!!!!! Let thalassemia be an adventure!!!! When you are too tired to do anything, enjoy a book. When you feel like you don't even care about tomorrow, talk to God. When others are bothering you with their attitude, FEEL SORRY FOR THEM! Imagine, not having compassion for others, does that kind of person even enjoy watching a tiny kitten play with a giant ball of yarn? Probably not.
Above and beyond all else, never forget, God is in charge of how long you live. He is in charge of how you live. He does not make mistakes. Someday, we will all understand what we have been through, until then, let's make it an adventure and remember, at least we know what we are fighting. I spent the first 15 years of my life feeling like I would die any minute and no doctor could figure out why. I spent weeks in the hospital every year and had more surgeries and tests than I can count. It took that long to diagnose me. Now, all of us here, we know. That gives us the ability to be a part of this site. Personally, I feel sorry for people who are so normal they have no place like this to share.
THANK YOU EACH AND EVERY ONE OF YOU FOR LIVING WITH THALASSEMIA. MAYBE SOMEDAY NO ONE WILL DIE FROM IT BECAUSE OF PEOPLE LIKE US!!!!!!!
I wish all of you a wonderful day, and if there is no way you can have a wonderful day, I hope there are wonderful moments in your day, OldThalGal