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Patient’s Perpective: Uncommon Threads

by Abby Thorelson 

Whether you are meeting a new thalassemia patient for the first time or picking up where you left off with one from last year, there is an instant deep connection that ties us to each other. Some may see it as an affliction, but I am beginning to see it as a special mark that inspires us to strive to be extraordinary rather than to settle for mediocrity.

In the tapestry of life, we have the honor of being woven with the same uncommon thread. We are unique and yet the same; our struggles and fears may be individual but are also so similar. You could say that it is in our genes.

This year’s thalassemia retreat was up in the beautiful wine country but there was no whine found among the patients. We spent our weekend together in the Russian River area, where Laurice Levine had arranged for us to stay at a beautiful and secluded estate. Our schedule consisted of settling in, exploring, cooking, cleaning, playing games, and catching up with one another as much as possible. On Saturday, we had our psychosocial session, moderated by Laurice. If I had to pick a title for it, I think I would call it “No Taboos.”

Imagine sitting in a group of 18 to 20 people, some of whom you have known for years and others whom you have just met for the first or second time. You can ask one question that every individual has to answer personally. The atmosphere is honest and truthful. What would your question be?

“I never expected to live past 30.” “They told my parents I would die in my teens.” “I just want to live into my 50s to see my child grow up.” “I’m living on borrowed time; I try to make the most of every moment.” “We need to live life to the fullest.” “It’s about quality, not quantity, of time.” These were just some of the comments that surfaced in answer to thought-provoking questions posed by various patients during the session. The questions included: “If you knew it was your last meal, what would you eat?” “For what would you want to be most remembered?” and “Where would you go if it was the last trip you would ever take?” Although death is not a popular subject in our society, it is a real part of a thalassemia patient’s life. I once heard someone say, “Thalassemia years are like dog years.” This is not to say that thalassemia patients live like dogs but that our lifespan is different, and each must decide to face it or try to flee from it.

We spent several hours posing questions and pondering answers, but interestingly, the theme remained constant. Although no one’s question included the words “death” or “dying,” somehow all the answers centered around that topic. To an outsider, the session might have seemed weird or depressing, but for us, it was very meaningful and needed. Only other thalassemia patients understand the struggle of getting up each day. No one else can imagine the fears or frustrations of having thalassemia. No one can empathize with the loss of a friend who had thalassemia like another patient who has lived your greatest struggles, experienced your deepest fears, and felt your biggest dreams.

For me, having thalassemia means that I have to make every moment count. It means that no time or person should be taken for granted and that I should try to live with no regrets. I believe that there are only a few things that will truly matter on my deathbed: those whom I love, those who love me, and where I’m going to spend eternity.

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