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.

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Introspection

This is another one of the "OMG I miss Dahy and I'm going to write all about it" so if that's not what floats your boat, don't say I didn't warn you.


Before I talk about my friend, first I want to discuss some sleep issues I have been having lately. For over two weeks I was averaging less than two hours a night. These two hours were so fragmented that cycle after cycle I was not entering REM sleep. A mind needs REM to properly sleep. A lack of it can actually cause psychosis. In my case, I nearly had a nervous breakdown. Last Monday I finally took so ill I ended up on the lawn slurring my words and my thoughts were completely fragmented. 

The Human League - "You've Lost That Loving Feeling"

While waiting for my psychiatrist to return my call, a friend recommended I call the man who last changed my meds at rehab. I did and he recognized my problem immediately. He put me on a low dose of the antidepressant impramine which I had been switched off when they put me on the Lexapro. We don't know why it took this long to effect me but the point is that less 48 hours later I had two full nights of uninterrupted sleep.



Ever since the ninth my wife and I have been in an extreme funk. It was also Mother's Day on Sunday here in America, and that is a reminder of my mum.Yes, I still miss her. 

The Stone Poneys feat. Linda Ronstadt - "Different Drum"

On the positive side, this was my wife's first Mother's Day since she became pregnant on the 5th of January as well as now being a mother to DJ and Sasha.  

This is probably my favourite women's empowerment song. When my wife had gone back to college I would play this every morning on the drive to her classes. Sunday I put my cellphone with this song playing  on the tray DJ and Sasha used to serve her breakfast in bed. She damn nearly cried.

Peter Gabriel & Youssou N'Dour -"Shaking the Tree"

When I turned into this type of introspective and melancholy mood I began to ponder about the possibility of an afterlife. The more I've thought about it lately, the more I find my mind opening to idea there might be something out there I'm not ready to accept. 

Soulsavers-"Presence of God"

Now with Dahy gone, I do hope one day to be reunited with two important people in my life. To see him and my mum both healthy and no longer having to fight their respective illnesses and demons, well that idea brings peace to my heart. I mean dammit no one should ever have to suffer like they did. Would it be the end of the world if they could actually experience what "should have been" instead of their life just ending when they died. Is that too much to ask for?

Joni Mitchell - "Circle Game"

Especially with the loss of Dahy I've begun to wonder about my lack in a belief in a god, much less all the anger I feel toward things like Huntington's Disease. Have I actually been blaming someone who may not even be responsible. Who ever said that a god is to blame for all the evil this world? 


If anyone ever got the bad end of the stick in life, it was Dahy. Yet he still managed to find some peace of mind in his church. So do his children. In fact, just recently Sasha told me she looks forward to going to church because its where she feels closest to her father. I find that bizarre just based on her age. Seven year old's can't grasp the ideas around most of the rituals and god talk yet, so I think there is something else going on. I do know that she thinks that's the one place her dad always found his centre (as she calls it "his calm").

Wilson Phillips - "Hold On"

I once heard a Catholic Priest speak on evil and the bad things that happen to us. He said that evil was brought on when Adam and Eve committed their big sin. The kicker is that this man went on to say that many people are uncomfortable with the thought of God not stepping in at that time. However, if he had then he would have taken away their free will. If he took that away, Adam and Eve wouldn't have been made in his image. God did have free will, after all and he made man and woman, not robot. 

STYX - "Mr. Roboto"

So combine what would have been David's 39th birthday followed four days later by Mother's Day and its been a bit sad of a week. Not depressed. Just introspective and melancholy. Obviously I've been doing a lot of thinking too. 

Nina Simone-"Don't Let Me Be Misunderstood"

This next song reminds me of Jane's recent trip to New Orleans. I have never heard this version before tonight. It also reminds me of Jan and Stella of HDTrainwreck. Their father, who has Huntington's Disease, has always been a big Animals fan.

The Animals-"House Of The Rising Sun (live)"

The home network went out last weekend, so we've been without internet access except for our telephones. Once I got that needed sleep yesterday I went straight to work on fixing it. Since my primary computer has been locked down for some odd bios password issue I don't have the ability to get to any of my data. I'm currently on an old laptop. At least the important parts like Word and the DVD player work on this old one.

Well, my eyes are falling down. So off I'm going to try and get a nap in. Right now, I want every inch of sleep I can get.

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.

On the Road with Dave and Paul

Joni Mitchell-"Circle Game"

"I've got AIDS, You've got Huntington's. That means one thing, buddy. ROAD TRIP!"

Yes, my friend Dave said it in those exact terms.

Heaven 17-"Geisha Boys and Temple Girls"

Our road trips had taken on almost epic status. Both of us had grown up without proper coping techniques for life. We had used anything and everything to escape. For that last years of our lives, that included rental cars and any highway that would have us (What, you think he'd take his beloved Lexis on a road trip, where would we fit our food?).

The Eagles-"Hotel California"

My head grew heavy and my sight grew dim

I had to stop for the night

There she stood in the doorway;

I heard the mission bell

And I was thinking to myself,

'this could be heaven or this could be hell'

Over the years we drove all the way down and then up the Pacific Coast Highway (aka Highway 1). On the way we stopped over to stay at the beautiful Hotel California, Palm Springs, simply because we already knew the one in Santa Barbara and wanted to compare notes over the infamous lyrics of the song of the same name. I wouldn't miss this hotel if you  have never been. I've already booked a room for March 1st of next year.

Rent Motion Picture Soundtrack-"No Day Like Today"

Then there was the trip through the Texas Panhandle. This was probably our craziest road trip of all. Dave and I had never been to Texas, and we were undergoing a lot of personal stress. His twins had just been born, he had tested positive for AIDS, and my neurologist had made an early diagnosis of Huntington's Disease based on soft symptoms. In addition, I had just purchased a home with my girlfriend at the time. We needed to get away through a safe outlet, and we knew the best time was now before we both ended up escaping in a self-destructive way.

We were lucky. We had lovers who understood that as long as took care of our responsibilities it was a healthy outlet that would strengthen our home relationships more than if we ended up using and drinking.

So off to Texas we went, just because we could. We took an AA meeting guide and called Central Office in each town we reached. We managed to fit in a different meeting each day while on the road. It is very true when you read that the more you go, the more the meetings stay the same. The only difference was the accents of the people who welcomed us as visitors to their kind towns. We attended meetings on Indian Reservations, in the middle of the sticks, and even one where the majority of people were military members in uniform.

Counting Crows - "Big Yellow Taxi"

Of all the things that will stay with me on these road trips is the music. Dave worked in music studios as a career and he could explain why certain music sounded the way it did. Most importantly, he taught me that good music knows when to be quiet. Well, just like life.

Depeche Mode-"Master and Servant"

Take this song for example (it was one of several we discussed to death while our spouse's eyes glazed over). In the beginning there is this complete silence in between each of the three men's vocals. Only then does it even introduce musical instruments in the form of the emulator and then a synthesizer to add to the lead vocals. Dave thought this is where the multitude of remixes failed on this song. They took what made this song unique and turned it into just another generic remix by removing the build up. 

Is it any wonder now that these road trips with their resulting discussions were just as mentally helpful to our wives as to us? You see, this was just the tip of the iceberg. We would then list and name half a dozen of the remixes and then debate the failures and possibilities of each of them. 

Pet Shop Boys-"West End Girls (12" Dance Remix)"

This is another song that fails as a remix because the important buildup is destroyed as soon as the first note comes out of your stereo system. We would have our windows wide open and be singing to the PSB as naturally as most men sang to Eminem. No wonder we got so many strange looks in states like Alabama.

Speaking of road trips, we had just planned on driving up the coast to Washington State later in March while he was in between contracts. I think I'm going to pass and just watch something on the travel channel. Road trips aren't fun alone, and somehow I don't see Jane rocking it out to the Pet Shop Boy's "Always On My Mind"

Terry Jacks-"Season's in the Sun"

RIP My Friend

You have a safe trip now

Exhaustion

Duran Duran-"The Wild Boys"

Yesterday morning I had a visit to my doctor to remove one of two chest tubes from my pneumonia. By the time I was home I was so exhausted I couldn't walk to the mailbox. Yet an hour later my wife and I were in a rental car on our way to Culver City.


This was just the beginning on an extremely stressful day. It appears that sometime around the middle of the night Saturday,  Dahy  had been released from medical detox. It must have been amicable as he left with what appears to be a prorated check from the facility. From there, he managed to enter another town without his vehicle (which was still in the original parking place when Jane and I found it yesterday night.) He deposited the check, made a sizable withdrawal at a busy ATM location and from there disappeared.

U2 featuring Johnny Cash-"The Wanderer"

Sometime within the next 48 hours he was received and admitted as a John Doe into a major medical facility outside of Los Angeles. He was not able to speak not think independently. Since he had no identification on him, the hospital did not know he was a hospice patient and he was placed in the ICU. (Some of his identifying information including his wallet (minus the cash), watch and wedding ring were located by Jane inside the Lexus. Our thinking is that Dahy thought it was safer there than wherever he went himself.) Once admitted to the facility was suffering from a few separate medical conditions including the pneumonia he had transferred to me. Yes, it had attacked his ravaged immune system again.

Joni Mitchell-"Circle Games"

Then the next evening a nurse came in that knew him from a previous lifetime ago. Specifically she recognized his face and tattoos (yes, your mother warned you to be careful what you put on your body-it does follow you for the rest of you life). To be exact she remembered small facial scar and a tattoo that had among other choice letters included the full F word. She managed an early morning call at his former employer in the Los Angeles area who as it happened had purchased the company he currently was working for on a contractual basis. They called Ms. K and notified her of her husband's positive location. Once she had determined it was him, she called Jane and I. With the twins, it would not make sense for her to come down to the area to drive him home. Against my better judgement, I agreed we would pick up Dahy and the Lexis. Big mistake.


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