Some of you know, many don’t, that I have another blog. I don’t write there very often… for so many reasons. Today I did. I’m sharing it here this time.
I’ve done a true disservice to this blog, to this topic, to readers, and to my own internal world, by avoiding writing about the realities of living with HD in our family. I started this blog to shine a light on a disease that has devastated our family, and so many others. I started it to find a space to share my struggle, as a family member who does not have Huntington’s Disease… as the “lucky one,” as so many people feel compelled to remind me. Lucky–– such a bitter word in my mouth, when it comes to the realities of HD. I started this blog to shine an unflinching light on so many aspects of this disease and the long, painful road families travels in living with HD.
But, I flinched.
I’ve flinched over and over and over again. I’ve flinched every time I try to explain what HD is…
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Good post. Stay strong. Marian
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Thanks Marian; that means a lot to me. xo
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Sometimes it’s just imposible to find the way to explain things that are so familiar to you and so totaly unfamiliar to others. No matter how you try you just don’t seem to find the right words, the right way etc. But as long as you don’t give up and keep trying you’re doing something. And that counts for a lot!
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Thanks Laila. It is all so inadequate, up against the suffering of those I love and all the families out there who do know what I’m talking about. Your words are a true kindness, thank you!
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Beautiful.
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Thanks so much.
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This is a beautiful piece, keep them coming. We met at Miraval, I had read some of your things on HuffPo but I did not make the connection until I got home. Love your blog and hope you are still feeling recharged!
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Wow, thanks Susan; I appreciate you taking the time! That was a magical few days… grateful for the time and people I got to enjoy there!
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