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.
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.
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The weather is raining, and it matches my mood. I'm really depressed. My mum has been on my mind today. So many fleeting memories of her, and its making me miss her so very much.
I remember moving up to Sheffield and all my Mum wanted in her house was a flower garden in the window. She told my father over and over that he could have the rest of the house but she wanted her window. For the life of me I could not understand her obsession with the window. Its only now as an adult that I understand she was already suffering from depression due to Huntington's Disease and the sunlight in this window helped make her feel better.
Stone Ponys-"Different Drummer"
Through all of this, my older brother Peter complained he didn't want to move. He wanted to stay in Leicester, to finish his schooling. Oh how they fought. Then Mum began crying and would leave the room. She didn't want anyone to see her crying. I always thought her reactions were inappropriate to the fighting. It wasn't until several years later that I learned she knew this as well, which is why she would leave the room.
Johnny Cash & Linda Ronstadt - "I Never Will Marry"
I found out a few years later when she and I had fought. She ran from the room crying and me, being the insensitive boy that I was, I went running after her. That's also when I first heard on this Huntington's Disease. Until that fateful day her and my dad had hid this from us.
Murray Head-"One Night In Bangkok (Extended Mix)"
The intro on this is fantastic. That alone is worth
the price of admission.
She never used the words "Huntington's Disease" that day, she just referred to it as the disease she got from her father. I was such a teenager I thought she meant she got it from him like a person gets an STD. Boy did she have to set me straight with what she meant.
Play that again Sam
Vinylshakerz-"One Night in Bangkok"
"No No Paul" I can still hear her voice in my head. "Nothing like that. Its just something genetic. That means that my dad had it and passed it on to me." I can still feel the hammer slam down when she said that. So many thoughts rushed through my head. Did that mean she would die of this, would I get it too since my mother had it, what about my brother?
Thompson Twins-"You Bring Me Up" Christmas 1984 TOTP
Yes, that is Holly Johnson of Frankie Goes to Hollywood
doing the introduction.
I didn't ask my mum those questions that fateful day in her bedroom. In fact, I never asked them of her. I went to the school library but they never heard of an emotional disease you get from your parents. I hadn't known my grandfather in many years, but I do remember his shaking and that he could barely talk. I asked about that and librarian gave me some books on Parkinson's Disease. I looked at them briefly, and told her that this wasn't what my Mum has, she was crying all the time too.
Three weeks later I was in my English class when a hall monitor came inside my classroom. She had a request slip and called out my name. I was fearful of what I had been accused of doing, and dropped a school book as I was trying to put my items away. The poor monitor must have seen my face as she explained that the librarian had requested my presence. At this, my English teacher took a different tack and put a friendly smile on his face.
Band-Aid- "Do They Know Its Christmas?"
So off I trotted with my slip to see the Librarian. It has seemed like an eon had passed since I last visited her and I had no idea why she would want to see me.
I walked in and handed her my pass. She smiled at me, and asked me to take a seat. Then she told me that she saw a show the night before and it may have answered my question. She asked if I had ever heard of Huntington's Disease. I told her it didn't ring a bell, and then she got out a book and it described my mother to a T. I slowly nodded to her to keep reading and she finished the whole description. At the end it her medical dictionary described my grandfather's condition when I last saw him.
Here was this poor woman basically becoming my genetic counselor. She explained to me the disease, that it was terminal, that a child appeared to have a 50% chance of getting it and that it occurred generally after childbearing years.
Queen feat. David Bowie & Annie Lennox - "Under Pressure"
I have wondered how she came across the decision to share this information with me. She could have easily ignored what she saw on the telly and changed the channel. She could have ignored my previous request for information. Instead, she felt that an informed child would best serve society. She is my role model when I worked in the library myself. I feel an informed student will best serve society.
I never brought that information to my mum, but I did ask my father when he came home from work. I outright asked him if Mum had Huntington's. He looked at me straight in the eye and asked where I heard that term. I told him I found it in the library,not an entire lie but I didn't want to get the librarian in trouble. My father went on to confirm that was what my mum was suffering from. I then asked Dad if that means my brothers, sisters or I could get it. He slowly nodded in the affirmative. It was the saddest I've ever seen him except when he lost mum.
Billy Joel-"Pressure"
I read Time Magazine, What does it mean?
From that time forward, I had a new respect for my mum. She was fighting this beast all alone. No one was there supporting her because we all were supposed to ignore the beast in the room. I learned that the day I talked about it with Dad. HD were forbidden words in my house. Its something that every day I try to break with tradition.
Elton John-"Levon"
Notice how distinctive this song is? Three notes on the piano and
the audience starts cheering Elton on. Beautiful and moving.
this is what music should be.
The day Mum took her life I remember coming home from school. There was just something different. I could tell you what it was, but it was an absence. There was no natural noise of a home being lived in, no smell of cooking, no expectant parent waiting to sit over homework. I remember dropping my schoolbag and knocking on my own house's door. I don't know why I did that. I just know that I did. As if in a bad dream nobody answered. I knocked again. Then I went in. I went through the living room to the kitchen. No food, no cooking. Everything was cleaned as if expecting a guest. I went back into the living room and then knocking on my parent's bedroom. There was no answer at the closed door.
I was going to wait until Peter came home but he was out on the football team and wouldn't be home for several more hours. I knocked at her door again. Now I was getting fearful. I didn't know of what but I was scared. Finally I opened up the bedroom door. Then I don't remember anything else until I arrived at my neighbor's house. The Mitchell's were always so kind and that's where I must have felt safe for it into their home that I ran.
Poor Mrs. Mitchell had to deal with me. I was screaming, and running like no tomorrow. She managed to get some tea down me and had me tell her my story. She then called the police and I remember her telling them it was "a suicide" and "appeared to be a gunshot". Then she called my father, who promptly came to get me. I don't know where we were going as home was not convenient but Dad just took me out for a quick snack and then we sat in the car.
Elton John-"Daniel"
One of the best Daniels, and I've heard a lot of them
When the police came I repeated my story and then went inside to confirm it. Then my dad asked if we could go, and we went to his office so he could bury his head in his work and we wouldn't see them remove Mum from her home for the last time.
We picked Peter and then went to the daycare where I youngest sister was. From there we all went out to eat as Dad told everyone what had occurred during the day. I just felt empty.
I was always closest to Mum. She was the parent that I confided in. She made the best gingerbread cookies. All these random thoughts came in my head, and sometimes still do. Most important, it all just up and disappeared. The person who made me feel whole was gone. That part of my heart remained empty until a few months ago when I finally found someone I could trust again.
Elton John - "Your Song"
My life went downhill for a number of years. Took my O's and barely passed them. Then instead of going to my As I dropped out. I took menial jobs before eventually attempting a geographic cure in the United States.
Phil Collins-"Take Me Home"
Here the audience knows the song after a few hits on the drum.
Take me home, since I don't remember
I've been a prisoner all my life,
By now I was drinking a bottle of Jack Daniels every day.I started early and drank everyday. Then one day I ran onto the 101. I don't know what I was thinking, if I just wanted to end it all or if I just wanted my life to be over but either way I ended up in the local psychiatric ward when I came out of my blackout.
It was there that I realized I needed to get my life together. With a psychiatrist I found the strength in me to go back to school.I finished my education after receiving a Bachelor's degree in Library Science. From there I applied for a job at the local library in the City College. I worked there until my depression and anxiety became debilitating and I applied for and received disability based on the years I had paid into the Social Security system. I also received my green card while in school which allowed me to accept some financial aide as well as allowing me to live here safely without fear of being deported.
Phil Collins-"In The Air Tonight (Live)"
After 9/11 the government became suspicious of those holding education or working visas. I had several visits from government officials until I received my green card.
Tears for Fears-"Shout"
Since that day I ran into the motorway have I ever thought about suicide? Yes I have. I would seriously consider it except it would affect too many people that love me. I wouldn't want anyone to walk in to find me dead. That is not fair to them. If there was a peaceful way to go then I would grab it in a heartbeat. I know how to go, the question is would I do it? In all honesty I can't answer that. I would ask Jane to be involved for the simple reason I don't want her to come home to find me dead. On the other hand, its not fair to her to take care of me when my condition deteriorates. In all honesty I don't want to ever get to that point. Would I rather be dead then to be where my grandfather was, yes I would.
Billy Idol-"Eyes Without a Face"
I'm not there yet, so my mind is still open. When the time comes I'll talk about with Jane, but not until then. I want to spend the time I have without this specter hanging over us.I'm selfish and I want this time to be as carefree as possible.
I love the Pet Shop Boys, then and now
Pet Shop Boys-"West End Girls"
Tomorrow I have a few errands to run, and then after work Jane and I are going to through our bookcase and donating some books to the People's Library in New York. The Operation Wall Street Library has been destroyed by the police. These books were literally thrown in the trash and ruined. When some books were recovered they threw them in the trash again. We thought mailing them our books would be a good way of supporting the movement.
Still have Cat Stevens playing today. That man is a hell of a musician. Speaking of music getting stuck in my head, I dreamed about the video Blind Youth by THL. In this dream J and I were walking all around the building featured in the video. We took our time and toured the building as if we were considering to buy an apartment in it for our home. Really twisted dream.
I'm still sitting on this CAG count. It just doesn't make sense and I don't do well with illogical things. I'm generally one of a scientific mind, and this doesn't fit anywhere. I feel like its like a round peg I'm trying to fit into a square hole. I'm pounding and pounding it but it isn't going in.
How the hell did I get such a large (JHD range) CAG count when I didn't become symptomatic until my mid 20's? It just doesn't work. It has to fit.
My right arm is still jumping. It is driving me crazy. Not just when weight bearing, so I'll be walking around the house with a jumping right arm. That's also my slightly stronger arm by default. Although I'm ambidextrous most things in this world were invented with the right-hander in mind. Now I'm reaching for the left handed versions of tools simply to make it easier to perform the tasks. This is the same shoulder that I was bitching about a couple weeks ago. I have a business meeting to attend to this evening and I'm already thinking of ways to hide this movement.
Royksopp - "Sparks
Another Gem by Wall of Sound Recording
Sparks-"Something for the Girl Who has Everything"
Two cuts today from a BonaFide American Artist Billy Joel
Billy Joel-"Pressure"
Billy Joel-"Summer Highland Falls 1977 Live"
I want to curl up in a little ball and cry. I'm tired of living up to everyone else's expectations when I don't even know what my own are.
I remember an interview with Michael J. Fox discussing the early years after his diagnosis of Parkinson's Disease. He spoke about his public and private faces, and how exhausting it was hiding his symptoms. I get that today. It freaking drains you. Emotionally and physically.
Another American Classic: Roy Orbison-"Crying"
Mary Travers(Nov 9, 1936 - Sept 16, 2009) and the Kingston Trio -"Where Have All The Flowers Gone"
Bob Dylan-"Times They are A'Changing"
A few more songs from the country that has welcomed me into its borders. If I hear one more idiot say America doesn't have a culture I'm going to hit him over the head with Blue Bayou.
