As long as I can remember people have been telling me I should write a book about my life. This comment has usually been accompanied by a look of a mix of amazement, pity and a little fear thrown in. At times a comment such as “That sucks,” or “Not sure how you do it,” and my favorite one I will never forget, “Why do you even bother?” have also been uttered in the same conversation.
The fear I see is not because they are scared of me, but more so because when I talk about my life it reminds them of how lucky they are and how easily that can be taken away. Sort of like slowing down to witness a car wreck, but quickly driving away just in case the situation is contagious.
I am an extremely private person, but also very open and honest. It’s a strange combination which I have yet to understand but fully accept. The reason I finally decided to write is because I realized that my time is shorter than the day before, and in these times of uncertain and scary changes for our medical care, my story and insight may make a difference for someone. For example, what it really feels like when a doctor pats you on the head and says “But you look fine.” And I also know that even though I have felt alone most of my life, there are so many others out there who have important thoughts to share as well.
The rumor is that a group of like-minded individuals can change the world. So, perhaps with this blog and your stories the hearts and minds of society, the medical field and the government will be enlightened. Perhaps that will lead to the change we “fine” people would really love to see so that none of us ever have to hear any of those words again.