Thursday, 18 October 2012

HD is a creature of habit

Well, don't say I didn't warn you. Its been really tough to get back to writing this blog just as much as I thought it would be. As I mentioned in that post, HD is a disease that causes some of us to become creatures of habits, both old and new.

Baby David is now waking up in the middle of the night. He's generally still a content child. With me as his father, I'm shocked, I tell you, shocked!

Casablanca's Gambling Scene

All joking aside, I never thought I'd feel the way I do toward my own child. As I've written about many times I never expected to have my own biological child. After seeing what HD did to my mother I couldn't bring a child into this world that ran a risk of getting this terrible disease.  It was only during the testing process when Jane brought it out that there is technology now so that our child will not suffer from the illness that will take his father that I even considered it. Even then, I thought Jane would be the one and only caregiver.  I never expected to attach to our baby as terrible as that sounds. I just didn't see it happening. 

This next song describes how I thought Jane and David would think.

Helen Reddy-"You and Me Against the World (Lou Rawls Show)

Not that I didn't think I'd be attached to David, just not even close to this extent.

Me attached to my biological child? Concerned how seeing HD effect his father? No, not Paul Ware. That must be another man.

Joni Mitchell-"The Circle Game (Live 1967) 
Can you tell by my choices in music today that my sister's positive test result is still on my mind? She loves late 60's and early 70's music even though she's my baby sister. God, its even hard to write what you tested positive for Sis. I'm sorry you tested positive for Huntington's. I know you want me to be able to say it. I just did. 
So for you, one of your favourite artists singing a song that is about as non-HD as you can get. 

I love you.

Gordon Lightfoot live on the American tely show Midnight Special  -"Sundown (1974)"

Back to David, that's not to say I thought I'd be a lousy Cat's the Cradle type of Dad, just that never saw myself wanting to cradle him, him, feed him, and hold him on my chest much less feel lousy I can't change him.

Harry Chapin-"Cat's in The Cradle"

I saw on Twitter on Tuesday on October 23rd that Depeche Mode will be having a press conference. Most likely this is what the band referred to earlier this year. That's basically the announcement of their tour. 

I only hope they will be playing the Santa Barbara County Bowl again. Since I've given up driving for the most part, concerts out of town are a real pain in the butt. Also the last time I saw them a special thing happened that is just so County Bowl (for those that don't know, its a small, non-arena venue. They play here because Martin Gore lives in town).

Depeche Mode-"Walking in My Shoes turned into Enjoy the Silence"

At least they can laugh at themselves, which is more than I can say for Jane. This was the one and only concert of theirs she's gone to. Thankfully, I have a friend that will drive me down and another to meet us  if its out of town. I don't see him as often as I'd like lately, but he'll be coming up if they play the bowl as well so I'd rather have the intimate atmosphere.

Recently I had the chance to see Elvis Costello in concert. He played for over two and a half hours here without a break. I've always really liked his 80s music, Veronica was just the topping on the cake.

Elvis Costello - "Veronica" 

 For some random reason I've found myself listening to a lot of Queen lately and thinking of Trish Dainton and her husband Steve. They were giant Queen fans. She lost him a bit over a year ago to Huntington's Disease. She also is a poet and wrote a wonderful book on HD Curse in Verse and Much More Worse. (Yes Trish, I'm still pushing your book, its that good).

So when I came across this wonderful video of Queen interpreted in American Sign Language (the translation is here at the link) Trish was the first person I thought of.

Queen-"Bohemian Rhapsody" (Stephen Moore in ASL)

 On that note, its time to close up.

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.

Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.

Friday, 12 October 2012


First, my wife Jane and I wanted to announce the birth of our child, David Daniel Ware. 

That's right, "Baby Ware" was born on 27 September 2012

John Denver-"Follow Me"

It was our good friends Stella and Jan over at HDTrainwreck who broke the news to the blogsphere. To two very good friends of ours, great scoop!

So in some of the worst taste I've ever exhibited here (especially considering how much Jane dislikes not only their music but local Martin L. Gore in particular):

Depeche Mode-"Black Celebration (Live at Wembley 1986)"

A few quick notes:

We had a friend who was homeless for two and a half months. She now is sharing a house with two other sober women. Who says good people are always punished? I'm so happy as her new home is much nicer than her old one where she was being emotionally abused.

In the meantime we saw the best of humanity come out. Jane took her out to have her hair done and helped spend some girl time with her. Another friend helped her keep her telephone service. Finally, a male acquaintance took her out to shop for some clothing to make her feel better about herself. Several other friends donated their living rooms, floors and any other space while she waited to get into the shelter. She even spent a couple days in our crowded house, not minding that every time one of us breathed we nearly kicked her we were so overflowed.

 Bananarama - "Na Na Hey Hey Kiss Him Goodbye"

So you may be wondering why I disappeared for so long. It has everything and nothing to do with Huntington's Disease. Like many people with HD, I am a creature of habit. Between the move, my sister's gene positive HD test result, David's birth, Dan's move into our home for a short period of time and the lack of internet for a couple of weeks, my habits were basically broken into five easy pieces. It is taking me all this time to start to get back into my old habits. Even now, it has taken me three days before I got enough written to even post my first video here.

Elton John-"Circle of Life"

This song is a shout out to Dahy's mother Corrine who has relocated from Belfast to help Jane in her last months of pregnancy. She was so happy to have had the chance to see her grandson DJ sing in his recital. It went off without a hitch in spite of his large cheering section. 

Its great to be back, now if I can keep in the habit of coming here on a regular basis I will be happy.

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.

Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.