The life of a man suffering from Huntington's Disease, a genetic and fatal illness. Every child of a HD parent has a 50 % chance of suffering from this fatal degenerative neurological illness.
This is the story of one such person.
Today there is going to more music than text. I am at the point where I'm at a loss for words. Hard to belief but yes, its true.
Depeche Mode-"Personal Jesus"
Although not the biggest fan of this song myself (I think underrated songs like "Clean" get overlooked), this version is very unique with strong American Blues roots. I wish I had found this before today.
Blood, Sweat & Tears-"And When I Die (Live)"
Late last evening we drove up to the Valley to stay with Dave's family for a few days. Although there are always snafus when being forced to settle an estate, this one has become extremely complicated in a short period of time. Items such as the car, which were willed to Ms. K in a community property estate, has an odd contract which is meant to prevent the original owner from reselling at a markup. Consequence is the manufacturer may have first right to purchase the car back since she was not on the deed (for liability reasons).
I was half done with another entry when I was told last night of Kathleen Edward's death. This poor girl had been through so much in her little life. Now she's with her mother.
Blood Sweat & Tears-"And When I Die"
I was writing last night when my Facebook Messenger went off. I turned to the FB tab and a friend asked if I knew Kathleen. My foggy brain didn't recognize the name from those on my friends list. It was when she described her that I realized who had passed away an hour earlier.
Pardon my language but Jesus Christ I hate this disease. Nine year old girls shouldn't be losing the ability to go outside and play.
Wilson Phillips-"Hold On"
After a few stressful days my wife and I went out to dinner and just have some nice quiet time together. Then a friend called and asked if by chance we wanted some months old furniture. Jane and I had been in the middle of choosing couches and here was a beauty. Its cream coloured and fits our decor. We also inherited two smoked glass tables. So now we have 1500 dollars worth of furniture in our front room and I need to move half of our old stuff out.
Its funny sometimes how we get what we need when we aren't looking for it.
Red Hot Chili Peppers-"Give It Away"
Until the books are moved, our living room looks like a hazard area. A hazard area with nice furniture. I've taken a photograph to show you how it looks now. I'll be taking another once we have moved everything in place. Once everything in place I'll be posting before and after photos.
The rest of the night we're going to be moving two bookcases. This is why I finally bought my Kindle. I simply ran out of room for my books.
The Human League-"You've Lost That Loving Feeling (Peel Sessions 1978)"
And what the hell was Philip Oakey thinking
with that hair and a beard?
Its time for me to sign off now. I have two bookcases to move. See you tomorrow.
Depression 4 Anxiety 5
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My physical symptoms are acting up like crazy. That should be no surprise since I was awake all night. The first half was spent burning CD's. The second half was washing the dinner dishware and talking with J.
It still sucks I can't stay up one night out of the year without paying for it with symptoms of HD creeping out twice as bad as usual. Yes, it sucks but today I can live with it.
Jane and I talked about a variety of things when she asked me a question. Not just any question, mind you, but THE question.
Stevie Nicks & Don Henley = "Leather and Lace"
I really identify with the male vocalist's words in this song.
Yeap, my girlfriend asked me last night if I'd marry her.
I told her I would be honored.
Sam Cooke-"Cupid"
Soon it'll be time for me to get that sleep, and then I'll be going to pick her ring out.
I still can't believe I said yes to marriage after swearing for all of my adult years that I wouldn't marry ANYONE.
Jane must be, well she is, a very special woman.
The Dixie Cups - "The Chapel of Love"
Wow, I'm still in shock. Me, the man that would never put any woman through his HD hell, is willing to get married. So what changed?
The Human League = Life on Your Own (Extended Remix)"
First, before I met Jane, I got tired of running every time I was in a serious relationship. I've done that for 20 years. Actually nothing else changed that I can think of except my perspective.
When my fiancee first met me, I wasn't symptomatic nor had I been tested. Over time as things between us became more serious, I let her know about the Huntington's Disease in my family and what it meant for me. She was one of the handful of women I've been involved with that haven't run for the hills at the first mention of HD. Yet Jane knew that eventually this neurological disease will kill me.
Blood, Sweat, & Tears = "And When I Die"
When I first got symptoms, she was there with me and understood what they were. To this day I remember my first symptom simply because of how kindly she dealt with it.
HD wasn't something random out in the universe that she had no idea about. She saw it with her own two eyes. She's had to deal with my depressive moods from HD since four months after we started dating, if not sooner. She's seen me shaking like a leaf from anxiety. The tremors in my good arm have woken her up in the middle of the night more times than I care to admit.Still she's let it roll off her back.
Through all that Jane's aware of, she knows what is happening and what will happen.
I didn't feel this warranted a full entry yet I didn't want to change my current blog entry so I'm giving it an appendix (its my blog, I can make the rules up as I go if I want!)
I was checking my facebook when I came across Jacey's video
This girl is so strong, my admiration for her runs deep. If only we all could have a heart like hers the world would be a much better place. I recommend you check out her other videos, especially insightful for those not fully acquainted with Juvenile Huntington's Disease is the one titled HDV_0046.MP4 .
By the way,any disease with Juvenile in the title should be banned off the face of the earth which is another reason I can't fathom a God that would do this to us. It amazes me ("Ye of such little faith" as Jesus Christ would say) that someone suffering at so young an age would have such strong faith. Some may be upset at hearing her religious views, but to me it just makes my jaw drop even further onto the ground.
So after watching that video the title and contents reminded me of this song for obvious reasons.
