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.
Again I was up all night. There is no one to blame but myself. I wanted to stay up reading on my Kindle. Now that I can read again I'm behaving as it can get snatched away again. Because it will. That's just one of the many abilities I will lose as my Huntington's disease progresses. As it is now, my comprehension is like a child with ADHD, I am very easily distracted. This is because my mind can no longer concentrate on more than one thing at a time. I used to multitask so this is very frustrating.
A Flock of Seagulls-"And I Run"
I have some very exciting news. There will be a guest blogger over the weekend. Its someone who I read on a constant basis so I'm looking forward to reading the piece.
Today's Double Feature-Frankie
Frankie Goes To Hollywood-"Two Tribes"
I love this video because it captures the feeling of the time so well. I remember the fear that our ally the United States would get nuked by Russia. In this video you see the two leaders fighting it out in a wrestling ring.
Frankie Goes to Hollywood-"Relax"
There are four videos to this song, and those are just the ones I know of. Several of them were banned by various stations, so they finally released a video where Holly Johnson is simply singing with a generic background. Another featured the Brian DePalma movie Body Double. The banned versions had references to sex, as if this song wasn't explicit enough. When this was popular there was a fad to wear t-shirts that stated "Relax" on them. I owned one, but you would be surprised at how many people wore them and didn't realize the song was about sex.
This morning I drank another cup of eggnog out of the cartoon. A neighbour had an extra carton and had dropped it by on New Years. Egg Nog is loaded with calories so I use it to supplement my meals. All the fat makes the sugar calories stick. Its also nice to drink because its naturally thick so I don't have to worry as much about it going down the wrong way.
Gary Numan-"Cars"
I received the results of my swallow test this morning. It isn't good. Food is leaking into my lungs. I am going to have to adjust my whole eating style and start thickening my liquids. I have an appointment with a therapist to help me learn to eat properly next week. Its scary stuff and sometimes I feel like my HD is attacking me from the inside out like a nasty parasite.
Sometimes I wish my HD would go on a holiday. It would be nice to live a carefree life for a few days, instead of being worried about my actions and thoughts. I don't see it happening though.
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.
I woke up this morning in a rather foul mood. Actually I still felt flatlined. As I began making my coffee an amazing thing happened. I looked down and realized here I was sleeping in until noon, in my pajamas, having time to enjoy my coffee, with a full wallet for my grocery shopping later. What do I have to complain about? You know, I was right. I don't have $hit to complain about. So good morning. Now let's start this blog out on a better, my happy note. Literally as well as figuratively.
I really felt this homemade video of stills caught Bob Denver's energy.
"Sunshine On My Shoulders"
There were a couple things on my Facebook this morning that made me smile with my breakfast.
First was this video with the caption that says it all.
"This is the old generation passing the message on to the new one."
David Crosby and Graham Nash singing "Teach Your Children"
The Second was this Webpage of absurd signs. Click Through the image for the page.
This is a terrible thing to say but death has been on my mind a lot lately. I've tried to deny it but its not something that simply goes away. I am thinking of my future and the future of ones I love more than is necessary. When my mind drifts it drifts back to what happens, if anything, to me after I die. This has been going on pretty much since I got my test results followed by my hospitalization. They were really the nails in my mental coffin and my mind has been nearly OCD on the topic ever since. I want it to go away so I can think of prettier things in life, but unless I go out of my way to change my thinking my mind is stuck on the big D.
Johnny Cash - God's Gonna Cut You Down
To complete this double feature:
"It was no longer my song anymore. It was a great honour." Trent Reznor of Nine Inch Nails on
Johnny Cash covering his song "Hurt".
One of the most wonderful thing's Glenn Campbell has given this generation is a face and voice to Alzheimer's Disease. By speaking out so soon after his diagnosis he is showing the world that there is life after the horrid visit to the doctor in which his entire life shifted from living to surviving.
This song brings up a funny memory. I was working one day in the shelves at the library and ran into some book that put this song in my mind. I was quietly humming it when a student came up to me and made a crack about me becoming "Americanized". What people often don't know is that for some oddball reason country music is fairly popular in the UK. This song was in the top 5 and I remember hearing it on the radio a lot when I was a small child. With its simplistic and clear lyrics it became a favourite for this 6 year old.
Glenn Campbell-"Rhinestone Cowboy"
Wow, that last song really just came out from behind my mental left field. I have no idea how I came up with it. I must say spending time visualizing this city boy singing Campbell in his little British accent did make me smile.
To see how strong an influence is, here is Human League's Empire State Human. It starts with Adrian Wright's choice of graphics: a photo of John Wayne with the words "Empire State Human" printed on it. This band is about as British anti-country/Citified as one can imagine. Yet there Wayne is, in all his American glory.
The Human League-"Empire State Human"
On top of having this OCD thing on death, I've been homesick. This week I've been looking at prices to fly home for a couple weeks via BA. Sure, I could save a few dollars by going through Expedia or one of those discount airlines, but I don't trust buying tickets with all these fees for baggage versus carry-ons versus J's purse. It is really insane looking at all these fees. Two tickets, four pieces of baggage and two normal size carry-ons, thank you very much. Its already enough to have to check what little we want to bring on with us against the TSA website and having to go through the scanners.
The current plan is for us to stay in London for a week and a half. My brother, his wife and my nieces and nephews will be in the city for nearly a week. We could sandwich our days around his holiday, and it will save driving up to Sheffield. Since I'm no longer driving that would be a big mess avoided. J has never driven on the left side of the road and for obvious reason's doesn't want to have to start now. Neither of us want to take the National Express.
On the other hand, I don't want to fly all the way and NOT go home at least for a day or two. It simply doesn't make sense and would likely leave me just as homesick.
Yet still, I need to spend some time with the kids and my brother. I need some time with my family while I still can appreciate it, and as yesterday's blog shows those days are already farther apart than I'd like to admit.
The only other option at this point would be to fly over alone for the holiday. That would save me a lot of money and I'd be safe to travel at my leisure without anyone to report to. I want to drive, I drive. I want to take public transportation, I take it. I could meet up with my brother in the city and ride with him back to Sheffield. The only problem (outside of the fact I don't feel safe driving) is I'd be reliant on his good graces and I'm sure he'd be very sick of seeing me for over a week even if I was staying in a hotel.
Nah, that last one's not going to work for a number of reasons. Scratch it off the list.
Earlier today I was making lunch and jamming to The Best of Sparks when a Moroder driven No. 1 Song in Heaven came on. (recurring theme-D-E-A-T-H) I'm jamming away and totally forgot J was coming home for lunch. Crap she scared the shit out of me! Imagine me making my little old sandwich screaming "Gabriel's plays it, God how's he plays it!!" and then a meek "hello hon?" during the synth break. I'm too jumpy lately. You should have seen the hole I left in our ceiling.
Sparks-"No 1 Song in Heaven"
R.I.P. Mama Cass Eliot-"Dream a Little Dream"
Now I'm just throwing some tunes onto the virtual turntable here. Its nearly 5 O'Clock and I've accomplished less than nothing. Still looking at plane ticket prices, spent an hour with a friend watching her watching the announcement of the pregnancy of Michelle Duggar which I could give a crap about but my friend does care about. She claims its an interest based on her major of Psychology. I call her full of bull$hit.
Do I really care if that woman chooses to risk her her life for religious or financial gain? I only care insomuch as if we restrict her from having children on any grounds, it would make it easier to restrict others who do less wrong in the future.
So for baby and mother, I hope they both arrive safe and healthy and that's the end of that.
The Beatles-"Oh Darling!"
For the third time today I'm trying to get my brain into gear and head off to the grocery store. I just can't do it. My head starts thinking of one of a few re-occurring themes (the D word) and I'm back on my bed, feet behind me, awash in anxiety and curled up like a bow.
Gary Numan-"Cars"
Here in my car
I feel safest of all...
Pet Shop Boys - "Opportunities (Let's Make Lots of Money)"
I've literally kicked the bed when my anxiety started to cause the nerves in my ankles to tingle. Now I'm tired, spent time holding my pillow, tried to cry it out and I still can't get out of here! ENOUGH!!!!!!!
I'm tired.
I'm tired of doing nothing and being drained of all energy.
I'm tired of being an unproductive human being,
of my level of activity being judged by some external rule..
Songs a bit heavy but so is my mood. Woke up with serious anxiety again today. Took some of my anxiety medication and waiting now for it to work. I know what is causing the anxiety so that is a good first step to dealing with it.
Here's the old classic from the Pet Shop Boys.
How their music has matured over the years.
Then again, so has London.
Someday I'd like to take a car and drive through the states. I was speaking recently with a man who had done just that. It sounded so fun. With my anxiety, if I got too upset I could just lock up inside the car (misuse of the verb to go, I know). It works, just ask Gary Numan.
Here in my car
I feel safest of all I can lock all my doors It's the only way to live In cars
One of the reason's I'm so upset is I let a certain family member bully me around. To cut to the chase this person gets away with all sorts of crap because he's seen as "the healthy one." Without an HD parent everyone always knew he was "safe" to love. They knew if they got attached to him he wouldn't up and kick the bucket. So for years he gets away with all sorts of things. Since he's my age I've always been a good target for him.
Today he posted something anti-Operation Wall Street on his Facebook with the reason of upsetting me (and wrote as much too.) . He knows I'm supporting the local Operation Occupy here to the point of bringing supplies to them.
Well, I've given the bastard too much ink already.
A very old music "video"
Thank you Mary. Between my cup of coffee, Xanax and you my mood has jumped over 6 to a 6.5.
Lets try to move it bit higher before I leave to run errands, shall we?
For its day, this video was (and still is obviously)
extremely racist but this song is so f'cking good.
.
On another note, its really funny that I hadn't heard the Beatles Baby You're a Rich Man for many years, but after playing it a few days ago I now can't go a day without playing it. So here's an encore.
You keep all your money in a big brown bag
Inside a zoo.
What a thing to do.
Depeche Mode People are People
Very experimental for its time, this song uses an sampling synthesizer to obtain different sounds from the world around them. You can hear it clearly in the beginning of the song which is matched brilliantly with the video in my opinion. This was covered in Synth Britannia.
The message from this song is really important. Whether it be a person who is homosexual to a person of a different race or style of dress or with diseases like Huntington's or AIDS "I can't understand what makes a man hate another man, help me understand".
Eternal by Technikal
Hard trance is right. You'll either love it or hate it but nothing in between.
I had to refrain from replying to a comment that stated: "why does all techno music keep the same beat throughout the entire song...." with this answer "Why does pop music keep the same beat through out the song? (See Baby You''re a Rich Man and People are People for examples")
This early afternoon I'm leaving you with Paul Simon and Me and Julio Down by the Schoolyard
This is probably the most fun video I've seen in a long time.
Its really hard to stay down when watching this one.
And Paul Simon brings my mood up to a 7! Alright, time to go run errands. See you tomorrow.
