Thank you

Up to now, this website contains mostly factual information, updates about exams and doctor’s visits. Emotions or feelings have not been part of it so far, but today I wanted to write something that doesn’t have anything to do with the exams, with future treatments, or with the medical facts. I would like to take a moment to write about all the support I have gotten, and what that means to me.

It has been, and continues to be, a long and uncertain journey. It gives me a lot of positive energy to know that so many people care about what is going on with me. I have gotten numerous emails, messages, cards, flowers and even balloons. At the same time, medical specialists from around the world are keeping an eye on my case, take their time to answer questions and provide me with feedback. There is no doubt in my mind that the best professionals are working on my complicated case at the VUmc, but it never hurts to get as many opinions as possible.

I am trying to view these new, and old, developments with an open mind. From many friends, family members, or fellow patients I have often heard: “why does this happen,” “it is unfair,” “I will never accept my limitations,” “why me,” “you have to fight,” “it is a battle that you will win,”, and “it can always be worse.” All these words are meant in the best ways possible, but my feeling is different. I don’t think that there is such a thing as a “fair” and an “unfair” amount of suffering. If there is, me having all the support, an excellent medical care team and a great health insurance, contrast sharply with a baby born with AIDS to a sick mother in a hut in a famished village in Afrika. At the same time, I don’t think it is helpful to minify your own grievances by telling yourself “things can always be worse”. I believe that whatever occupies your mind, whether it is something seemingly insignificant like a tooth ache, an ingrown toe nail, or a presentation at work; these things are important.

Acceptance to me isn’t sitting back and doing nothing. It’s having the clarity of mind to know when to act and when to focus on other things. To me, spending time with family and friends is more important than wasting it on negative thoughts about unfairness, non-acceptance, and future images of what may or may not happen.

Very often I read and hear about how patients are “fighting” and “won” their battle with a disease. It is not that I think people should “give up,” and “throw in the towel.” I believe that “surrendering to” and “accepting” the circumstances can help make the best of the current situation. Of course, this isn’t easy and it helps me enormously to see how many people care and show their support. Thank you!

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