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.
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.
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.
After an exhausting week, I was going to take today off from blogging. After the book club last night, I went out with some friends to a restaurant and to celebrate a birthday. After good food, good company and a great cake I came home at a quarter to midnight wound up. I finally fell asleep at four, and slept through until three in the afternoon.
After waking up, taking my handful of "morning" medications and eating breakfast I was finally awake. Well, after all that and five cups of black coffee.
So I come on to check my Facebook and found great news that I simply had to blog about. You have read so many of my posts about Amy Ahearn, the missing woman last seen in Norwalk, California.
There was wonderful news this afternoon. Amy was found last night. She's currently being evaluated by a social worker.
I'd like to take this space to thank the family who on multiple occasions took Amy in, fed her, helped clothe her and even called law enforcement (who never came). I also want to thank LAPD for bringing Amy in. (Now LAPD, don't make me eat my words.)
I'm starting to work on an academic paper I never finished last round in college. Its a sociological look at riots in the Isla Vista area outside of the local University. I've had my research information for years. Why finish it now? Its a bucket list item.
The riots culminated in multiple burnings of the Bank of America outside the university campus and a student's (Kevin Moran) death at the hands of law enforcement. There are many parallels between that time and the current Occupy movement here. This includes both movements symbolic target of the BofA.
If, by chance I become as involved in this as I was the time I started my research you are going to be so sorry you ever heard of the " Bank of Amerika"
For those interested, I will soon finish importing my bookmarks into Google's online feature. When I do, they will be accessible to all.
As you listen to Governor Ronald Reagan's words, they probably sound familiar. They are the same arguments used by people in authority against the Occupy movement. Outsiders, troublemakers vs those who "helped law enforcement."
The once liberal Gov. Ronald Reagan.
And as for me, I've finished grocery shopping, stocking up on foods I can eat while on the ground surrounded around research papers.
Now I'm off for a romantic dinner at an Italian-American restaurant. I'll leave you what I was listening to earlier today. Here are two singles from The Human League's newest album, Credo.
"Night People"
"Never Let Me Go"
Oh, if you came here looking for a glimpse of life with Huntington's Disease, guess what? You just stumbled across it.
It's dreary outside the house today. A spot of rain through the grey clouds. How appropriate for Remembrance Day, or Veteran's Day, depending on where you live.
The weather also matches my mood.
Yesterday night, after I logged off of my computer I got ready to go out for the night with my friends. I picked out my clothes, turned the hot water on to soak the dishes, started dinner for J and me, and jumped in the shower. Big mistake. Catch it yet?
Denny Laine with Paul McCartney & Wings - "Richard Cory"
I'm in the shower and the hot water runs out. This was strange enough, but the water pressure seemed "off". This house, like all houses, has its quirks. One of them is the hot water. It is near impossible to get it perfect, and that has become an art form. Its either too hot or ice cold, nothing in between. You can run hot water til the cows come home and it won't run out. We have a full size gas water heater and it has been known to handle seven people. You can imagine now why it was so strange to run out of water. Now have you found it?
Second half of my Wings Double Feature
"Listen to What The Man Said"
Once I got out of the shower, turned off my transistor radio and got dressed, I went out to the kitchen. There was all my hot water, still running over the dishes. Thank goodness the stopper on the sink had not been sitting right at the bottom. If it had, it would have flooded into the living room.
I felt so foolish, dumb and idiotic all wrapped into one. Why the hell hadn't I noticed this, much less reacted, when I had about ten warning signs there was a problem? If nothing else, why hadn't it occurred to me as a possibility?
Actually, it had. That's whats so scary. I dismissed it in less than ten seconds in the back of my mind. It would have been forgotten if I hadn't walked out to the living room hearing running water.
Earth to Paul...Earth to Paul...
Blondie-"Heart of Glass"
I wish I had an answer why I let this happen. Just like I wish I had an answer for why I left the screen door unlatched for the cat to get out of, not once but THRICE in as many days. Geeze Louise. I need a full time keeper these days to follow me around. This isn't sloppy, or lazy or ... or anything. There is something wrong again with my thinking and for the sake of me I can't grab it. Instead I'm playing catch-up after one theoretical fire after another.
John Lennon Double Feature
"Nobody Told Me"
So after each of these near disasters I have to weigh what to share with other people and why. Am I doing it to gauge how "out of it" I'm acting, or so they can keep a reasonable eye on what goes around their own home? If I don't tell people, is that fair and reasonable?
What about the book club that meets in member's homes, do I tell them I'm the idiot that put the empty coffee pot back on the coffee maker? If not, is that fair or reasonable? When we meet in my home, how much do I tell them or why?
So then I look at look at it this way. How much would I expect to know if another member might cause a small accidental fire?
Wow, that's exhausting. How about if I just sit here and don't touch anything? Then I don't have to worry, double check or tell anybody anything?
John Lennon-"Watching the Wheels"
Let's be honest. Its not feasible to expect myself to sit still. I'm a moving, breathing human being. I'm not expected to be perfect, by any means. Where are the borders between "normal" and ""accident waiting to happen" ? Is there wiggle room? How about property co-ownership?
Traveling Wilburys - "End Of The Line"
Well, that's much ado about nothing. At the end of the day, after spending more time devoted to this issue than it deserves, I have come upon the conclusion that:
Nothing needs to be done. I'm a responsible adult. If I'm concerned about the cat getting out I can make a vocal warning to myself to strengthen the reminder that "I'm making sure the door is locked so the kitten doesn't run out in the rain as she is apt to do."
If I'm that concerned about leaving the water running or the coffee pot being left out or...
Then I just need to take a little more time each day devoted to my daily actions. I'm not in a race right now, I need to learn that.
So why was I so worked up last night again? Oh yes, the running hot water. That type of thing can happen to the best of us, HD or no HD. What's important is for me to remember that and keep it in perspective.
Bill Wither's "Lean on Me"
(Thank's to GAWS on Facebook for this one)
Its amazing what a walk between the raindrops can solve.
The clock just hit twelve noon as I sat down to type my first few letters here. Its good to have a new, fresh start after yesterday.
Did I sound whiney or what? I probably did because I was so tired of being sick and tired. One thing many people don't understand is that since Huntington's Disease affects the brain it also affects our thinking processes. We know its busted, that's the frustration. Yet we still want it to work right, as we often know what right is. So we fight it inside our brains.
Like me. Yesterday. I knew it isn't right to be so upset about walking three blocks and being inside a shop for 15 minutes. Yet I was petrified to go. Petrified as being on the upside down loop on a roller-coaster. I knew that the fear wasn't in proportion to the action, but that didn't help at all. It simply adds to the frustration.
You know that stupid feeling you get when you leave the house and forgot to check the coffee pot? You know you unplugged it, yet... that little voice is saying "Did you check it? Are you sure its unplugged?" Magnify that by 15 and you get an idea where I was yesterday every time I got up to leave the house.
This went on for nine hours! It took that long for me to throw Sparks on and get outside the house. Then one foot in front of the other and twenty-five minutes later I'm done and I'm home safe. Exhausted but safe.
Then comes the next day. Here I am. I want to go out one block. Yet again the fear is taking over, I can feel it in the back of my kneecaps. My legs are already pulled up in a protective angle. WTH?
All over what? The fact I need to go outside to smoke? You got it! So here we go all over again.
Joni Mitchell - "Circle Game"
Its days like yesterday and today when it doesn't seem so bad to know that some day I'm going to be 6 feet under. I'm not suicidal. don't get me wrong. I only mean that it will be nice not fighting myself.
Stop the Merry-Go-'Round. I want to get off!
The Eagles-Hotel California
So now I'm back home, and do I feel better? Hell no. Now I need to get out of the bedroom to the kitchen and that's now too much. So I'm going to relax, try to make the bed around the sleeping cat and really try to find something cheerful.
Frankie Goes to Hollywood will be our Triple feature today with three cover tunes from their brilliant album Welcome to the Pleasuredome. There isn't one bad tune on this album.
And before you ask - The answer is Yes, I did have a "Relax" T-Shirt and Yes, I knew what it meant. As long as the folks didn't know I was safe. ;-)
Frankie Goes To Hollywood-"San Jose"
Frankie takes on Bruce Springsteen's "Born to Run"
"Ferry Cross The Mersey" with brilliant visuals
Every time the music stops my head starts whirring and I feel the empty walls. Strange.
Paul Oakenfold feat. Matt Goss - "Firefly"
Sophie Ellis Bextor-"Murder on the Dancefloor" This is just a "fun" song.
I was reading on my Facebook earlier a friend talk about Queen (Queen, Cash and Cooke) and it got me thinking about what musical geniuses they were.
Queen-"Flash"
Queen-"Under Pressure" feat. David Bowie Gotta love those visuals R.I.P. Freddie Mercury
I'm throwing on one more by Frankie simply because I can't get it out of my head today. Although a heavy Christmas release, I first heard this as the last cut on the Pleasuredome CD (or was it on Peel). Either way, it is one of the most beautiful love songs I've heard in my 40 plus years on the face of this earth.
Frankie Goes to Hollywood-"Power of Love" Sit back, relax and forget about the camels for a few minutes. Just listen to the lyrics.
On that note I'm going to leave you. The cat finally stopped making me pay for waking her up after making the bed, in other words after an hour of demanding payment in petting she fell asleep.
This leaves me with several chores around the home to finish before I go out to a friend's house later tonight. So off to do the dishes and jump in the shower, while I can.
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..
