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.

Engagement

Mood 9.0
Anxiety = 3.0


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. 

Jerry Lee Lewis="Whole Lotta Shaking Goin' On"

Yet she still wants to marry me.

Go figure.

Crap video, Beautiful Song

Noel Paul Stookey-"The Wedding Song"

All I know is that I won't complain.

See you tomorrow.

Mood 9.5

Anxiety = 1.0

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

BBC2, Human League and oh no, I'm falling in love

As they say on Chan4 tl;dr

If you don't understand that, then don't worry. Read ahead!

Look at this gem Trish Dainton of Curse in Verse & Much More Worse found! Its only a video I've wanted to see since I was 13 years old.  I'm so excited to share this with you. Its one of the Human League's second television appearances and their first after signing with Virgin Records. They performed two songs, including Empire State Human, shown here on BBC2's Mainstream.

Just for this, I'm going to push your book again tonight Trish.  Again, Curse in Verse & Much More Worse is a book of poetry by a woman who was the carer of her husband Steve who died of Huntington's Disease earlier this year. The book is a combination of prose as well as her poems in which she places herself in both the roles of a person with HD as well as a Carer. It is a very good book for anyone who is either taking care of a person who suffers from a terminal illness or their carer. I can't recommend it highly enough. You can buy it in the UK at Amazon as well as in the US by clicking the title above.

Please forgive the first part of this blog as the internet is down so I'm posting on my mobile.

Last night was crazy and I felt violated.


Yesterday I did too much and got stressed out. It can happen to the best of us. I also took Naprosin for my back which ate through my gut and codeine which made me dizzy. No fun. So I get sick in the bathroom and J decides it must be some Huntington's thing. As if I can't get normal sick,right? Its one of those times when I think she sees the disease and not the person, you know?

This is the kicker and what royally pissed me off. She f'cking posted on my Twitter account! WTF? So here I am in the bathroom, willing to take the Visteril for my naseau which I never do and she's on MY Twitter account asking for help. Yeah, she doesn't want me to take the Vistaril because it can cause random movements but that's her issue. Yeah I normally don't like those drugs but last night I didn't have a choice.

So here I am, on my hands and knees over the porcelain king and I blew up. I haven't been this upset in years.

My blog and Twitter are my personal space and just because I wasn't able to lock my computer down doesn't mean I should be worried about someone in my house using it.

I know she has feelings for me and is worried but that gives her zero right to go into my space. That's a whole other issue. Still, unless she passed away I'd NEVER EVER go through  her address book, Twitter,  or Facebook. Its just wrong.

Let me tell you if I wasn't sick I'd have taken my laptop and Droid to a hotel for a couple days. Instead, when she relaxes after class I'll explain that for me its a private thing. As mad as I was then, now I realize she's not a mind-reader.

I went to see my shrink this morning and told him everything that has happened the last week.  The last previous weeks'  my mood swings were severe enough I went on a mood stabilizer, which feels like its starting to work. Still I felt it was important to make sure that isn't the underlying cause so I ran everything I could remember from the week to him. There was a lot of stuff. Sometimes we don't realize it while we're in the midst of it.

In fact, I finally told him about this blog (and he promised all on his own not to look for or read it). It even came up that I am more open here than anywhere else. He asked if I would give him an example and I told him about yesterday's post about my mum. His mouth nearly dropped open as its not something I've been able to really talk about with him, even after two years. He asked who reads it and I told him as far as I know no one I've met personally, maybe one person I know as she's on my Twitter and I post entries there.

Doc said its okay and I'm not weird to want to keep it that way. I only know one person in real life on my Twitter account and they're the reason for my Twitter addiction. So I blocked J.

Its not personal but as I told my doc I want to be open here, not worrying what X person is going to say about Y statement. I also don't want it used against me.

I needed to go out soon to fill my anti-depressant and make copies of my Living Will and posters about Amy Ahearn. I was going to distribute them today with my friend but all these psychiatric drugs (Xanax, Tofranil and Lyrica) are making me so very tired on top of the Vistaril last night. I have fallen asleep three times today. Then again I slept like crap the  whole week. The police & sheriff stations will have to wait until tomorrow. Of all people to understand the importance of medicating the psychiatric side of Huntington's it is Amy's sister. Sadly, Amy is like me in terms of suffering from those types symptoms, only worse. I will get the copies made today.

Sometimes at home I feel like three people. And I've heard all these quotes with my own ears. There's Paul the normal guy who J and most of society wants to be around. He's a normal guy looking for a normal job. "Poor boy hasn't found the right woman yet to settle down with and have kids but give him time...in fact I have just the woman in mind..." 

Second, there's the guy who's mom was "cookoo" and even though we don't say anything to his face we are careful around him. We all hope he doesn't end up like her. 

Then there's the HD Paul (note the HD comes before the name). Its this third one they're all worried about right now. His personality is a bit different to those close to him and people don't want to see the HD part of it. They don't like it when he goes out to show posters to strangers of a missing woman just because she has Huntington's Disease and he realizes it could have been him that went off missing. Come on folks! He's giving money to help find a cure for HD, and how do we really know his mother had it at all anyway? Or his other relatives before her? He "only has large involuntary movements right now, not fine ones."

"I know," someone else said , "I saw the large tremors so it can't be HD, Paul. And while I have you here, we all know the mumbling is just being lazy. I hate how you've been doing that lately. Don't you care enough about me to even talk clearly all the time? I think it could be all those meds, do you have to take them all?"

I want to scream "If I could go without all these meds don't you think I would? This isn't exactly fun!" but I just keep quiet. I know its not the meds causing the mumbling and that my mother never had minor tremors nor  dancing. I also know that she died early on in progression and had already fallen often enough she was in a wheelchair most of the time. I know that she suffered from extreme depression and anxiety like I do and those along with dementia were her primary symptoms. I know the results of her brain scan look just like the ones of HD patients in the  documentaries. I know that's what the radiologist in his report said without using the words "HD". I know that generations before all died of things such as pneumonia, suicide or dementia. It doesn't take a genius to figure out what was going on.

I hope that if I disappeared my older brother back in the UK would make sure there was a police officer in charge of my missing persons case and that the officer understood why a person with HD might run away due to false thinking. I hope the HD community would come together to help him, as they are Amy's sister Margie.  

You know what else I hope? I hope someone will bother to be troubled, just a little, and make sure I'm okay and comfortable. We did that for Mum and without those memories I don't want to think of how I'd feel now. I'm not asking for the world on a plate here, just someone making sure I have medical insurance and I'm in a bed that is comfortable.

What I don't hope for is someone to be tending to my every need. Look, only once have I had a relationship that was serious enough I would even consider marriage. My shrink says that I push people away before they can become that close. Perhaps he's right. I don't know.  I do know that it would make sense after seeing what happened to my father once my mother died from her own hand due to her HD. I know I don't want to put anyone through that.

Its as the couple sang at the end of La Vie Boheme (Third video down at the link) "No one's perfect, I've got baggage."  "Life's too short babe, time is flying, I'm looking for baggage that goes with mine."  Well, I haven't found anyone who's baggage goes with mine yet. I haven't ever led anyone to believe that their's does because chances are there isn't anyone who's baggage will match mine. In fact I've always gone the other way as I've said above. Sorta like Neil in this song.

I'm playing this next song because my anti-D and mood stabilizers are starting to work tonight putting me in a better mood. I took some time to explain to J how I felt about the Twitter thing and she had no idea. "They call it the WORLD Wide Web for a reason, Honey" is actually how she worded it. In fact she apologized and is sitting here on her side of the bed reading her book while I finish this on my laptop. The book is one of my late friend Penny's: Mark Bowden of Black Hawk Down's newer book Guests of the Ayatollah: The Iran Hostage Crisis: The First Battle in America's War with Militant Islam. I'm going to curl up in a few minutes myself.


First I want to end with a few words from my Doc today. He asked me if I didn't have any feelings for J why the hell was I so wrapped up around her and cared what she though and said. Why was she able to influence my attitude so much? So I did I lot of thinking between the lines here in this entry today.

I know it sounds weird after all my ramblings but I really had some things I needed to think about today. You see, I think I might be falling in love. This isn't supposed to happen. Not to me, not now.

Is love so fragile...
And the heart so hollow
Shatter with words...
Impossible to follow
You're saying I'm fragile... I try not to be
I search only... for something I can't see

I have my own life... and I am stronger
Than you know
But I carry this feeling
When you walked into my house
That you won't be walking out the door
Still I carry this feeling
When you walked into my house
That you won't be walking out the door

Lovers forever... face to face
My city or mountains
Stay with me stay
I need you to love me
I need you today
Give to me your leather...
Take from me... my lace

You in the moonlight
With your sleepy eyes
Could you ever love a man like me
And you were right
When I walked into your house
I knew I'd never want to leave
Sometimes I'm a strong man
Sometimes cold and scared
And sometimes I cry
But that time I saw you
I knew with you to light my nights
Somehow I'd get by
First time I saw you
I knew with you to light my nights
Somehow I would get by

Lovers forever... face to face
My city or mountains
Stay with me stay
I need you to love me
I need you today
Give to me your leather...
Take from me... my lace

Lovers forever... face to face
My city or mountains
Stay with me stay
I need you to love me
I need you to stay
Give to me your leather
Take from me... my lace
Take from me... my lace
Take from me... my lace

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