Easter Monday

I hope this blog post finds you well. This year for Easter I actually had plans. My children's First Confession was that morning, their Palm Sunday and our Easter.

Ted Neeley-"Gethsemane"

Their father had bought the outfits for them to wear during his last night at home. He hung up the clothes, gave each of his kids a kiss and went off to work. Somewhere in there he managed to drop a note into each of their pockets.


My wife was getting their clothes ready when she found the piece of paper in DJ's pocket. She opened it, read it, put it back and started sobbing. Its been that kind of weekend.

OMD-"If You Leave"

It was a nice day. It may sound sad, but its really not. Its been a time of healing. We are starting to enjoy each other's company and feel like a family. In fact, Easter afternoon we were invited to a friend's house for a BBQ. This is the first time all four of us were invited to do something together.

Somehow last night before this happened I was listening to music when this song came on. DJ fell in love right away, so to not include it would be a crime.

Paul McCartney-"Put It There"

After a while I sat near the stereo and played Music For the Masses followed by Songs of Faith and Devotion. Jane asked me several times to turn it off before the kids started singing Strangelove at school. I thought she was over reacting until this morning. I heard DJ sing "Common Nation" while getting dressed. Its a good thing I put those headphones on before he learned a worse set of words.

DJ has the most beautiful voice. This is the first time I ever heard it. He is the more quiet of the twins, so it was a shock for him to open up by singing as he did. Music runs in that family. I hope he chooses to do something with it.

Jane agrees with me, and we have decided to consider voice lessons. At the least it hopefully will give him an outlet to release his feelings. It couldn't hurt, could it? It might even help him crawl out of his shell a little.

Sasha on the other hand has been very willing to say what is on her mind. As I went in to read them a story last night she just looked up at me and told me she misses her Daddy. I told her that I did too, and we talked about him back and forth, sharing stories. 

Depeche Mode (Devotional Tour)-"Condemnation"

Finally, my friend Stella is going to Brattleboro Retreat tomorrow for help with her depression. Stella was recently diagnosed with Huntington's Disease after her positive HD gene test last year. She is understandably nervous about her stay there and I will be keeping her in my thoughts. I'd appreciate it if you would do the same.

So Stella, this song is going out to you.

The Beatles-"Baby, You're a Rich Man"

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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Where R U?

The Beatles - "In My Life"

"Where R U?" asked my phone silently this morning, its Text Message Screen flashing briefly while I was in my bathroom. On the other end of the line was my neighbour  and friend who lives down my street. He was going to drive me to the out of town gathering.  The back of my mind had confused 6:15 to 6:50 am. My neighbour had driven my darkened house but not called me. If he had, at least he would have received my just awakened voice or my voice behind running water. The house was darkened in the front, but not the back bathroom where I was. My phone is on ringer but text messages have only vibrated since I first bought it. Since  I hate hearing the same sound several times a day when a text message comes through I've always left it in this default. Today was the first time where it would have mattered whether it rang out loud or not. 

Paul McCartney rarity-"I'll Give You a Ring"

Had a friend who owned the rare clear Japanese Yellow 

12" vinyl disk. B-side of "Take It Away".

So when I went by his house at 6:50 he was gone. I called, got his machine left a message as I walked home. I drank the rest of my coffee, downloaded a couple free Kindle Books for my Android (my Nook App is still acting up, not allowing new downloads days at time) and my eyes hit my lunch bag. You see, last night at 9:00 pm my friend told me the time  he  was coming and that I needed to brownbag a lunch. Unlike the usual gatherings, they weren't serving lunch. I didn't have time nor the food to put together that quickly so I hit the deli service at the local supermarket and proceeded to make a nice deli sandwich with fixings for the long day. I had been eyeing that lunch since I made it.

The Carpenters-"Rainy Days and Mondays"

I felt like crap. Here I was, didn't know why but my ride had taken off, and I was stuck at home with my lunch next to me on my bed. On went the computer. I got on Twitter, noticed Greg Mitchell, one of my current favorite Non-fiction author,'s book on the Death Penalty was free on the Kindle for one day only. I quickly downloaded it. Then I picked up my phone, opened the book and started to feel sorry for myself this cold and lonely morning where I'm already really tired from the long day ahead with little sleep. 

The Beatles-"For No One"

So I proceeded to drink another cup of coffee while I waited for my friend's return call. When it came later this morning, he was almost at the destination and let me know I had called when he was already in Los Angeles County.  "I wouldn't have been if you called all along" I mumbled but only loud enough for myself to hear. After hanging up and barely avoiding the guilt trip in his voice I wasn't happy. How dare he try to pin this on me by saying he drove by my house slowly and it seemed darkened. It wasn't until after this call that I noticed the text message blinking. "Where R U?" It asked at 6:22 am. "On the toilet," I replied to myself as I saw the time stamp on the message. 

The Bee Gees-"You Should be Dancing"

Well, that call followed by the discovery of a text message brought me to awareness of my friend's actions, only not. What I had become aware of was the fact we both may be in the wrong. I can live with that. So the next big question was what to do with my new caffeine fueled day ? The answer was staring me right in my face. I had Mitchell's new book and my sack lunch. Let 'er rip open! 

Cher-"If I Could Turn Back Time"

Now that my lunch is near finished, my book being charged, and my Pepsi half gone I'm ready to curl up for a nap. I may be loaded to the gills with caffeine but my full tummy, sleepless night, and good book were exhausting enough, in a good way, to relax me. So pajama time it is. I may just get some sleep. And if I don't? Then book time again it is. There are worse things around & its nice to be able to read fairly well again. That was one symptom of my HD that slightly "improved" when I stopped taking my old mood stabilizer. You know what else? When I was walking back home earlier this morning I realized how write my fiancee was about wanting me to stay home today. I really am not ready to be gone for a  whole day on an out of town adventure. That would be pushing my recovery a bit much. Hopefully next time I'll realize this before I make the plans to go.

[SPACE] The Final Frontier...

 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. Just don't text me expecting a drop my hands reply.

Scales of Judgement

I was invited to an out of town meeting tomorrow and I'm going to attend. I haven't told my fiancee yet and I know she's going to raise hell. 

This is how I'd see it if the shoe was on the other foot. I'd be really hurt. Here I was taking care of her and as soon as she feels half decent she's willing to run off at the first minute, forget how my concerns, since her only concern is that she wants to have a good time.

Roykopp - Happy Up Here

Looking at it that way I'm feeling really bad about my decision to go. On one hand I really just want to get out of the house, even if it means leaving early and getting home late.  I'm  willing to take precautionary measures including drinking Gatorade in place of soda, a lunch I can chew in small controlled bites so I don't swallow it the wrong way, and isolating myself away from the others including meal time. 

Okay...Time to pull out those scales of judgement.

So the question is...Is this an acceptable risk? The off top answer is no. There is no positive. Then the only positive is what I term the mental health factor. So lets weigh that in. What opportunities does this activity give me that I don't get with others? People interaction is good, as is brain activity. I can get both with other activities but this group, which is a workshop for non-profit board I serve on, is a good way for me to get both at the same time, and a really high combination of both.

Now on the scales the answer is "I'll ask my fiancee what she thinks is a good idea" and hope she doesn't kill me with one of my own heavy books LOL.

First Half of today's Double Feature

Mormon Tabernacle Choir-"Gloria"

And another Christmas Favorite:

Mormon Tabernacle Choir-"Hallelujah"

Next up, Monday I have to make an appointment for a swallowing test; I'm not looking forward to this, nor the therapy that I'm sure will follow. After all of this, most likely I'm looking at a feeding tube down the way a bit. 

Elvis Presley-"Silent Night"

I've never been a fan of artificial nutrition. In fact my current advance directive has "No feeding tube"  or its cousin in three separate places. I've always assumed by the time I would need it my mind would be fairly blown and my body was obviously following it closely. At that point to deny me a food tube would be a form of passive euthanasia. Well, now it appears that my HD is taking another tact, continuing to hit my emotional mind but also my GI tract. Meanwhile I've started the DNA analysis at the IVF clinic and my fiancee has her mind on our upcoming marriage. 

Gene Autry-"Rudolf The Red Nosed Reindeer"

So my question to put on the judgement scale is 'Should I tell her about my concerns and feelings or continue to act that everything is going fine, hoping the wedge between us isn't too deep.

This one seems answer itself. I need to tell her. If I don't she will notice I'm holding back from her. I've never been good at that. Its a guy thing.  Women can always notice this and pry it out. Its not a question of if, but when. If I want it to be on my terms I'm going to have to tell her. The key is to remember I've put her through a lot, I don't need to make this a whole 'nother issue entirely. Add it to my  concerns about pneumonia or something. 

Annie Lennox-"God Rest Ye Merry Gentlemen"

Okay, lately I've been enjoying listening to Roald Dahl. Tonight I'm listening to The BFG. Dahl is one author that's constantly good on the audio-books I've heard. The other is Fleming (Ian Fleming). Its odd as both authors are associated with James Bond. Fleming for writing the original set of novels and Dahl for writing the script for the film Live and Let Die

Live and Let Die Title Sequence

McCartney & Wings-"Live and Let Die"

Wedding songs and ...Parenthood?

I finally got some some sleep, or I could say I crashed and burned. By nine pm I was knee deep in sleep. It was nice!


My sleep cycle readjusted, and I woke up bright and early. The downside is that my telephone is still sitting at 61% charged. Oh well, so is life. Just another excuse to stay in bed and read.

Band Aid-"Do They Know its Christmas"

I remember this record. I bought it, brought it home and put it on my turntable looking at the sleeve. I was surprised at the intricate design with so little time to design it. Overall, it was a nice little package.

David Bowie & Bing Crosby - "Little Drummer Boy/Peace on Earth"

Later today is a Christmas Party. I left an open open RSVP with the host. As much as I love this particular group and the party- the larger the group, the worse my physical symptoms lately. Its something I know I should be confronting but I'm not necessarily ready to do that.

Van Halen-"Right Now"

I love this song. Its on my list of empowering music. It reminds me that I can be here doing what I need to for myself or some where else. I want to be here, where I am,  "Right Now".

The next three songs are the current contenders for our wedding. If you have a favorite, let me know which one and why in the comments.

John Denver-"Follow Me"

I had forgotten this one until Jane brought it up when we discussing music. I don't know where I was exposed to this Denver song, but it was soon after my arrival in America. All I know is that in my mind I had always told myself that when I find the woman that's in this song I'll know she's the one. When I met Jane...you got it, she was the woman in this song. I didn't tell her this until three years ago as I didn't want to scare her away LOL.

Next...

Stevie Nicks & Don Henley-"Leather & Lace" 

Its offbeat, but so are we. Its also speaks of a strong woman with her own life separate from her lover, and a man who is not afraid to show to her his emotions. It also has a silly, literal meaning for us. When we first started dating, she was renting a house with two other girlfriends. We now own that house and the two former roommates will be her matrons of honor. I literally "walked into your house, and knew I'd never want to leave"

This is the current taker for first place:

Noel Paul Stookey - "The Wedding Song"

Yes, it has some religious references but I don't have a problem with them. With my spiritual uncertainty at most they it will always represent a snapshot of my life at the time we were married. If I spiritually move in any direction I see myself moving toward the spiritual side not the radical atheist side. Jane has always been a spiritual (not religious) person and really loves this song. Also if we chose this song and either of us move away from that point of view before the ceremony we can always revisit our choice at that time.

On another note, before I play one last Christmas song, yesterday evening Jane and I had another discussion. She wanted to revisit the issue of having children. 

No real problem here. I've had a vasectomy and we both know the chances of having that reversed. 


Did I tell you she had done her homework?


Yeap, she brings to the table a pile of information on pre-implantation genetic diagnosis-in vitro fertilization treatments, and the fact her health plan covers this procedure. That's a mouthful, huh? What PGD-IVF consists of is conceiving embryos in a petri dish and testing the embryos for Huntington's first, then only implanting the ones that have tested negative. 


Also, in IVF they can use a little needle to extract the sperm (OUCH!), so having a vasectomy doesn't stand in the way of the procedure. 


Now, actually I don't have any problem with this, well outside of the needle part. Its just, well, I never thought that I could be a father. 

Paul McCartney will be our double feature today.

Paul McCartney-"Put it There"

Last time I played this on my blog it was

 about my Godson, as I thought 

that was the closest I'd ever be to having a child.

Have a dreamed about it? Actually yes I have. After Jane and I last talked about this topic I had several dreams about being a dad. Its something I'd love to be, but its just that this has always been a bottom-of-the-bucket-list-sort-of dream, you know? Now its one tiny, well more than tiny,  step closer to becoming a reality. 


I told her to go ahead and start what she needs to on her end, I'm good to go on mine. Her  mouth dropped open. I leaned over and closed it. She hugged me and then nearly passed out. She really thought there was a good chance I was going to say no go. I told her that she doesn't need to second guess me, if she thinks I'll say yes, she's probably right. And then I told her if she hadn't already made the appointment I'd  give her ten bucks because I know her that well. She admitted she had, that it was Monday and that's when I told her we aren't getting married because we don't know each other, after all. 

Paul McCartney-"Maybe I'm Amazed"

John Lennon-"Woman"

To to be a sneak I slipped this in her IPod alarm clock this morning. 

Here are two Christmas songs to lead you out this afternoon. They are as different as can be.

A Cold War favourite
Weird Al-"Christmas at Ground Zero"

Kings College, Cambridge - "We Three Kings"

Hope you have a good Sunday.

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

Sweets anyone?

Paul McCartney-Wonderful Christmas Time

Traveling Wilburys-"End of the Line"

Have you ever taken a train to the end of the line? One year I did this. I was taking Amtrak from Santa Barbara to UCLA Medical Centre and then on the spur of the moment decided to take it to the End of the Line in San Diego. Once we arrived, we stayed in Diego until the train reversed several hours later and took it home. It was a beautiful trip up the California Coast, and something I'd like to do again.

Yesterday I saw something that just appalled me. You know those things that make you physically ill? I saw one of those things yesterday. 

I was at a friend's home. She's having a terrible time this holiday season because she lost her mother to Huntington's Disease this summer. While I was visiting yesterday, her half-sister (on her father's side) outright said that A) its not healthy to cry privately during holidays and B) as far as this sister is concerned my friend might as well go and kill herself. These things were not said in haste, they were obviously thought out. Many children of parents with Huntington's  know that there is almost a ten percent chance a HD patient will take their own life. One of the many reasons is simple, a major symptom of HD is depression. 

I swear I almost knocked this sister down and if she wasn't a lady (which is debatable) I would have. Oh, did I mention my friend's mother did end her own life as well?

David Lee Roth-"California Girls"

When I lived in England I thought this video was a parody.

Then I moved here and realized it's the truth.

The Beach Boys-"Kokomo"

Rupert Holmes-"The Pina Colada Song"

This is one of those WTF songs. Can you imagine sitting down

to write a song about having an affair?

I woke up early this morning to Jane's "Best of Harry Belafonte" CD. Sometimes I need to feel that soul. So instead of a double feature, I'll be playing four Belafonte tunes today. 

The thing about Harry is once I start listening to his voice, I can't stop. 

Harry Belafonte-"Abraham, Martin and John"

Some performances are so good that even

the scratchiest LP can move you.

Harry Belafonte-"John Henry"

Harry Belafonte and Odetta - "There's A Hole in The Bucket"

Harry Belafonte-"Jamaica Farewell" 

Yummm...So I'm sitting on my bed listening to Harry, while eating Peanut Brittle, Aplets & Cotlets, and Dutch sugar cookies. Between all those sweets and music I'm in heaven. Oh, did I mention the four boxes of Bob's Candy Canes? How about we forget about them.

Actually, this food is good for me. For reasons unknown, people with HD consume A LOT  of calories. In fact, we'll go through 3,000 - 5,000 calories a day just to maintain our weight. In my case its even worse because my CAG genetic repeat is three times the normal of most HD patients. The higher your repeat, the more calories you consume. If you are a "normal" person reading this blog, you run a CAG repeat of >28. If you suffer from regular HD, your CAG repeats should be between 28 - 39. A child with Juvenile Huntington's generally stops at 100. My CAG repeats went over 150.That's a lot of See's Candy.

So that's my justification for eating all these holiday sweets, and I'm sticking to it.

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

Late night questions

Its four thirty in the morning, I can't sleep and thoughts are racing through me head at lightening speed. I'm trying to get them written out so hopefully they'll go away. I know sometimes it helps. I may or may not publish this, either way it won't be my main blog entry.


My mind won't settle. If its not tripping on my mum its tripping on a dear woman I know through facebook. She suffers from JHD (Juvenile Huntington's Disease) and its been very hard for her the last few days. Finally today she had to be taken to the hospital for her symptoms. Those that don't know JHD  causes different and more severe symptoms than HD. Luckily they were able to pull her out of the event but it took two hours and she had to be poked in a main vein to get her treated. 

Pain-Eleanor Rigby 

Warning-Goth/Metal

I saw a video today of a local Occupy Protest. In this video was a woman receiving a citation and another man. Both of them I know personally from outside the Occupy movement. It upset me to see them looking at possible arrest for doing nothing but meeting in the daylight in a public park. Sometimes I get so angry at this crap. These are as good of people as you'll ever see. So society craps on them for giving a $hit? This video brings all the news I've seen and heard about people abused by police to a new light, now that people I know are affected. Does that make me selfish or human?

Hair Chorus-"Walking In Space"

Third, I have my godson's gift packaged and ready to mail off to the UK today. Only problem is I don't want any contact with his mother after what she told Jane yesterday. Would you? Yet I don't want him to pay. This particular gift is very personal however, and I don't want to give Kris any ammunition for the future.

Paul McCartney-"Put It There"

I chose this song because of the nature of my relationship to Kris's son. I don't have to be his father to have that type of relationship. My long distance mobile phone bill is living proof of that. Yet he's worth every cent and I'd do it all again in a heartbeat. In fact, he's already on our wedding invite short list. Ah, screw her and the horse she rode in on, he's getting the gift.

Fourth, as I've mentioned before I'm having a crisis of faith, or should I say non-faith. I'm thinking one thing rationally but my heart is questioning. I actually prayed for someone today. To whom did I pray I couldn't tell you but I still did it. That's something I haven't done since a year after Mum's death. It was a surreal experience but on the other hand knowing I'm not alone would be a nice thing too.

George Harrison - "My Sweet Lord"

Finally, this whole suicide thing is sitting on me. When does it stop being selfish and start becoming fair game? Or does it ever? Is it selfish to want to avoid an extremely long, protracted illness in which your brain breaks down until you can't control your body and you either suffer a heart attack or die of pneumonia? Oh wait, there's a third door, you can refuse a feeding tube and starve to death. Yeah, what a choice. Of course, if you are lucky, your brain has now broken down so much you aren't aware of your impending death any longer. Your emaciated body will welcome it. If there is a God, does this send you to hell? If so, that isn't a very loving god is it? Where does my will fit into all of this? 

Elvis Costello-Veronica

Do I have a right to chose NOT to end up like Veronica?

A friend brought up a good point tonight. Doesn't Jane have the right to know what I'm thinking or does she have to wait until my fear and depression get the best of me? If I really, truly love her aren't I obligated to share these thoughts with her so also has time to process her feeling? I think my friend is right. So this opens up a whole can of worms, such as when and where? How much detail? If I don't tell her, does that mean I don't trust her? Isn't trust an integral part of a relationship? 

Paul McCartney-Figure of Eight

which is exactly where my thinking is taking me tonight.

Crap, I'm starting to cry again. Enough of this, I don't even know what I'm crying over. I can't even tell if its a good cry or if I'm crying over something sad. I just know the feeling of warm tears running down my face. 

Please, I'm so tired of all this......Someone make it stop.Well, that's not entirely true. I haven't really been the same since I received my test results. Lets be honest, no one who gets HD at my age expects a CAG repeat around 150. Its not supposed to happen and it scares the crap out of me. Also it seems like lately my symptoms are just running rampant, and I know my doctors are concerned the way they are so drastically changing and raising my medications. That scares me too.

Well, I'm going to try to leave you on a positive note. I found this at @GregMitch's daily blog. 

"Video from the #occupy bat signal crew. Inside look at this 

series of inspirational video projections on the side 

of the Verizon building on November 17th."

G'morning

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

Bond, James Bond

Good to see you today. I took a break yesterday. Its important for me to keep everything in perspective, and if I'm tired and really don't want to blog, then I give myself the day off and have a good lazy Sunday.

Also, the dinner Saturday went really well. Good food and good company. We both needed it. Sometimes its just important to get away from everything. This weekend was a wonderful quiet two days away from all the stresses in both of our lives. I say two because I convinced her to take a four day weekend.

Tommy James and The Shondells-"I Think We're Alone Now"

It turns out that J is having a terrible time at work. The person who is between her and her boss is being a complete ass.

I knew things were bad, but I didn't know how bad.

She's in middle management, and with her employer for longer than I've known her. This is making the whole thing that more stressful. She's been there for years, and the benefit package is hard to beat.

The Carpenters-"Rainy Days and Mondays"

This is one of those Mondays where I had to drag myself out of bed. It took five cups of coffee just to keep me from yawning.

Our double feature today-The brilliant all women's group, The Bangles

Maniac Monday

This song brings back many good memories. When I was working, I would actually put this song on my turntable to wake me up as I'd be getting dressed and downing my breakfast. 

Oh Whey Oh

"Walk Like an Egyptian"

On to new and better things. Yesterday, after a hiatus away, I logged into the James Bond forum where I post. Imagine my wonderful shock to discover that they are now filming "Skyfall", the next film in the decades old series. 

One of the best Opening Title sequences. The visuals went so well with the song.

Paul McCartney & Wings-"Live and Let Die"

I feel like a little boy on Christmas Morning. I love James Bond films that much. I seen them all multiple times, including the dreaded Bronson era (GoldenEye was the only good film, no fault of Pierce.)

Tina Turner sings Bono's "GoldenEye"

I'm just getting shivers of excitement just watching this opening sequence. Now that I'm  home from the bank and store I'm watching the film again. Its a nice reward for all those chores.

While its on I'm cooking a surprise meal for J. I called her best friend who just happened to "find" a free movie coupon after I called her on the sly. While J's gone, I'm making a nice dinner for her to come home to. 

Its important to me that she knows I heard how hard work is and that I feel its time for me step up to the plate to make her life easier during all of this.

U2-"With or Without You"

I got a call from @Meekdev tonight. She let me know her mother, Penny, had an outstanding credit at the comic store. Penny was an avid Archie fan,  in fact it was directly because of her I discovered the "Gen X/Yuppie" adult oriented Archie comic title "Archie Got Married." Discovered and addicted to this title, I might add.

Anyway, Meeks called me today and told me to begin expecting Archie Got Married  in my mailbox for the next year. She said that's what her Mum would have wanted. Meekodev, by the way, is also an avid comic reader. She is a Marvel fan.

The reason I am naming Meeko by name is that I want to publicly thank her (I told her *make that threatened* I would).

I've always thought of  Penny when I read an Archie Gets Married. Now I have an additional reason to do so. Thanks my friend Meek for being in my life. We need more of you in this world.

This one is going out to you, my friend. I hope you find the Archie of your dreams instead of your Jughead ;-)

I owe you a ticket to Skyfall. Until then, I'll take that virgin martini shaken not stirred.

The Archies-"Sugar, Sugar"

G'nite folks!

Paul

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