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Keeping a distance

I miss the kind of blogging I used to do, and my recent forced vacation gave me much more time than usual for reflection.


Now that working on HPS is the central thing in my life, and not what I do in my off hours from work, it’s actually harder to blog about life with HPS. It’s as if I must maintain some sort of cold emotional distance in order to keep my focus. If I allow myself to get emotional about the circumstances of one friend with HPS, then I cannot do the business things that need to be done for the other 1,007 plus and growing people with HPS.


I can’t stop and reflect about my own problems and issues, but instead must remain focused on the goal – the cure.


I know some of you, my readers, miss the more reflective posts. I know I promised a few months ago to work on this. I know I need to, and should, make more time for personal reflection. In the end, it’s probably healthier. I’ll try.


Comments

Anonymous said…
I love the new format of your blog Heather. It took a bit to get used to at first, but it is really well done.
Thanks. I'm not sure I'm entirely happy with it yet. I'm not techie enough to design something myself.

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