After making plans with Jane to go out and look for her engagement ring I sat down with her and opened the conversation up about my health.
Lets be honest here, she's not going off to marry the healthiest man on the block. In fact, according to most statistics she's likely to be available again in ten to twelve years. I wanted to make sure she fully understood the ramifications of this situation. She then proceeded to accuse me of projecting my feelings onto her. Maybe I was, but I'm also concerned that she understands the ramifications of Huntington's Disease. I saw what it did to my mother, Jane didn't.
This conversation nearly turned into our first fight since we became engaged. I finally figured out why. I realized that I'm telling her how to think. I wouldn't like it if someone told me how I should feel either. So I apologized, and she asked for some literature. I thought I'd share it here.
First is this video. It by far is the best educational piece on Huntington's Disease.
- Faithnhope4hd's Space - K Gibs is dealing with many of the same issues I am, including reaching out to other's and sharing her life knowledge while she still can.
- Curse in Verse and Much More Worse - by Trish Dalton. This book captures through poetry and prose the daily frustrations and concerns those of us with HD or our carers face.
- Charlotte Raven-Should I take my own life? This article appeared in the Guardian and captures the thoughts of a woman in the early stages of Huntington's Disease.
Hurry Up and Wait
As I come across more pieces I will place them here.
If you know of something that should be included on this list, leave it in the comments and I'll take a look. Thanks!
Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.
No comments:
Post a Comment