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.
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
If you haven't had the chance to read my blog last time I played Annie, never fear. I mentioned over dinner a couple nights ago in passing that the vocals on Diva are gorgeous. Guess what was at my feet yesterday morning?
I consider this a bribe so that I wouldn't say a word while certain somebody's are out at the shopping centre on Black Friday.
At least we both agreed to shop local this year.
Annie Lennox - "Why"
Pardon my typing here, but I'm shaking like a leaf. My fingers are actually bouncing off the keypad. This is the worst I remember feeling since I took ill. Not good.
Bill Haley-"Shake, Rattle and Roll"
What can I say? I went high quality when I made this video on Wednesday.
Dead Milkmen-"Instant Club Hit"
Martin Rushent's Gem Love and Dancing, Recorded at Genetics. Remix of Human League's LP Dare.
The League Unlimited Orchestra - "Love & Dancing"
Human League-"Blind Youth"
The concrete jungle of Sheffield.
Sheffield's one and only ABC-"Poison Arrow"
Talking Heads-"Burning Down the House" on Letterman
Peter Gabriel - "Solsbury Hill" Tony Levin, David Rhodes and Gabriel
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.
Today I ordered several albums and books from Amazon. Another CD arrived yesterday. The album is a 1986 album titled Philip Oakey & Giorgio Moroder. It was a commercial failure but I have always liked the mix of the two musicians. They complement each other just like Jimmy Sommerville compliments Sparks (No 1 in Heaven).
Sparks (with Jimmy Sommerville) The No. 1 Song in Heaven
The 80's was called the Coke decade for a reason
Soft Cell - TOTP
Soft Cell - "Tainted Love '91" ( Mendelsohn Mix)
Marc Almond Parody
Speaking of Oakey, this was in my email earlier today. Its Philip Oakey on ITV's Tiswas Indian Shirt Contest (Part 1) (1981)
According to Wikipedia: Tiswas was a Saturday morning children's Britishtelevision series which ran from 5 January 1974 to 3 April 1982 and was produced for the ITV network by ATV Network Limited.
It also had a limited adult following, as I have fond memories of my parents laughing while watching Titswas Saturdays.
Bronski Beat & Marc Almond - "I Feel Love (Remix)"
Sorry I didn't get this entry finished last night, I ended up in Emergency. I thought I was fighting my annual bronchitis but instead I have walking pneumonia so I had a 12 hour date early this morning with an IV pole.
I must have been sicker than I felt because I wasn't there more than an hour and already asleep as soon as the chest films were finished.
Slept from 3:00 am until 10:30 am, then spent some time Tweeting on my Droid and signed out at 12:00 noon. Only problem, once I signed the discharge papers they still hadn't removed my IV line from the antibiotics & saline, so I was waiting almost another hour for that.
Annie Lennox - "Why"
from the Diva album
Eurythmics - "Love is a Stranger"
I was going to head out to the Immedicenter today but at 1 am last night J just looked at me and said "You're going to the ER tonight." So I packed my overnight case, phone and a change of clothes and left with her half an hour later. I know a losing fight when I see one. I didn't have a chance in hell.
Power Station - "Get It On (Bang a Gong)"
Laura Branigan - "Gloria"
Helen Reddy - "Angie Baby"
I have always liked the way this video author used The Sims 2 as her canvas
to make an animated music vision.
Today's Double (make that Triple) Feature is my Mum's favorite artist.
After hearing her laughter in my head while
I remember her watching Tiswas with Dad,
it also sadly reminds me the Cure for Huntington's Disease
is too late for many.
Linda Ronstadt - "When Will I be Loved"
Linda Ronstadt -"You're No Good"
About here my temperature started to spike, so if I don't appear to make sense I probably don't. I'm at 102 degrees.. and under a physician's care.
The Stone Poneys - "Different Drum"
Mum definitively danced to a Different Drummer, in a good way. It was from her that I learned to stand up and be independently minded instead of just the next man on the block.I love being the 'not-so-quiet' Library Aide, the man who listens to Trance in his 40's and helps supply the local "Occupy Santa Barbara" down in Del a Guerra Plaza. Over 5 years ago, I was at the same plaza supporting the Print Teamsters Union protesting against the local newspaper gagging their reporters over union activities.
Okay, time for my antibiotics, inhaler and cough syrup along with my regular nighttime meds. Then off to bed I go. Its now 11:30pm and I'm awake and still tired. J finally pulled me off the couch and helped me into my pj's and in bed. I don't remember the last time I've had to have this much help while sick, not including the pox.
Its embarrassing. Its also more than a bit humiliating. Okay,its outright emasculating to have someone who I have a romantic relationship with change me out of my clothes and undies, into my PJ's and take me into the toilet to wash my face and brush myteeth. I outright wanted to die.
I had one of those a-Ha moments. Let's be honest here. Its not going uphill from here.
Now if we can only curl up and sleep. If I can't sleep in a hour, J filled my Lunesta sleeping pill (she knows me all to well), and I'll take one of those.
You know what really scared me tonight? What if I was living alone? Who would take care of me then?
$hit Mum, I don't know how you handled Dad caring for you the months you managed to have this kind of dual relationship. Bless both of you for loving each other.
