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.
Hello, long time no see. The kids are keeping me busy during the afternoon and evenings. During the day I spend it keeping the house clean, preparing dinner and generally taking care of myself. I need to find a happy medium for blog time as well. Everything else has seemed to find its niche.
Culture Club - "Time (Clock Of The Heart)"
DJ was invited to sing at his vocal coach's recital in September. We are all very excited for him. She admitted that its not her practice to have first year students perform but she thinks he'll shine. The Ware house is very excited for him. Especially his sister Sasha who has been bragging to anyone and everyone who will listen.
We were actually a bit concerned about how Sasha would deal with all this attention on her brother. So far she's handling it well.
To think it all started with Uncle Paul playing this song:
Depeche Mode - "Condemnation"
We may have discovered her talent. She had expressed interest in ice skating but with the nearest rink an hour away we didn't know how interested she really was. It now appears her father would drop her off with her coach two days a week near Los Angeles while he worked in the afternoons. Then he'd watch her for an hour practicing. She had been skating in pairs with a seven year old boy. She never volunteered that Dahy had dropped her off at the rink until last week when I pushed her after she told me again she liked to skate. This time I asked her when she'd gone, and she replied "all the time". I asked a few more probing questions and it all came out. Finally when told her that I had no idea she told me since I was good friends with her Daddy she assumed I'd known. That's when I had the first Paul-is-not-a-mind-reader speech.
Falco - "Rock Me Amadeus (Original Single Version)"
After some well placed phone calls, I was able to get through to her pairs coach. She had wondered why Sasha had stopped coming so suddenly, and why her mother never returned her calls after her missed lessons. I explained that Sasha had been with her father his last week, and soon after staying with us. Sasha's partner had already moved on to train with another girl. She's not working out well with him, and his mother said she'd much prefer to start him up with Sasha again. Now if we can only get her custom skates from her former home, that would be a blessing. If not, we'll take the money for her new skates from the estate her father left her. She had just finished breaking in her last pair, though, so we want to avoid that if possible. In the meantime I renewed her annual Figure Skating Club membership card so she will be able to test when she is ready.
Sasha's coach had expressed real sadness over Dahy's death. He had left a very favourable impression on her. Not just as a skating parent as a person in general.
West Side Story - "America"
The move looks like it will probably be a "go". A woman Jane knows from work wants a smaller house and with three children we need a bigger one. The plan is for us to pay the difference with a loan from her parents and then tie our mortgage onto the new property. The appraisers came earlier this week, and Monday we have an appointment to have the bank go over our new property.
Billy Idol - "Mony Mony (Live)"
Also on the horizon early next month is our visit to Corrine, their grandmother, who lives in West Belfast. She is a bit frightened only having flown twice (the first time was to meet Jane and see Dahy) so she'll be flying back with us and staying for a few weeks in the summer. I've already starting cleaning out my library to convert it back to a bedroom for her stay. On top of all this, Corrine has already offered to come out when Baby Ware is born to help raise the twins while Jane and I adjust to him/her. Talk about a blessing in disguise. If this June works out well, we may take her up on the offer.
Soulsavers - "Just Try"
My current favourite Soulsavers song. I know that I've been pounding them down your throat but I haven't heard an album as good as "The Light the Dead See" in several years. It also came out at a time in my life when I am also spending a lot of time looking at my own spirituality. The great thing about this album is that it isn't so much as in belief in God, but is simply about a search for "God, as you understand him." If you recognize that last phrase, you will probably get quite a bit from this album. I believe that's why I can't stop playing it, the music feels as if its about my journey as well.
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I'll tell you why Baby's crying/cuz' she's dying arent we all".
So here we are still at the medical facility. Sitting and waiting, and waiting to sit. Things calm down just long enough where sleep comes and then someone in the room will shift and everyone wakes up. Once we were able to bring in a xerox of Dahy's driving licence to compare the signature against his advance directive things changed drastically. Unused machines were physically removed in some cases, for larger pieces they were simply moved. I have learned more about "no pressures" and "DNI's" than I ever thought possible.
I've learned how easy it is to have a chemically induced cardiac event and how truly painful they can be. I've learned some doctor's fear giving medications out on the slim chance the resulting cardiac condition will be aggravated, or that medications we take daily like decongestants raise the blood pressure. That last lesson I learned after he vomited twice after coughing so strongly, yet still refusing the morphine. The doctor finally called in a steroid so he could sleep. He felt the other medication options would increase his risk of a heart attack exponentially.
I've learned that for some people it is instinctual to avoid medications and when they no longer do is the time you worry. I learned that lesson tonight when for the first time Dahy didn't try to move away from the morphine injection when the evening nurse told him what was in it. That was the first time I cried.
The Cars-"Drive"
Tonight I've learned that even six year children will love unconditionally when they can't be loved back. I've learned there is such a thing as too much silence, and I need to keep my computer or telephone mp3 plugged in simply to get some sleep. Otherwise, every time Dahy misses a breathe I waken. And tonight he's been missing a lot of breathes and that's when they are strong enough to see or hear.
Depeche Mode-"Enjoy The Silence"
All I ever wanted, all I ever needed
Is here in my arms
Words are very unnecessary
They can only do harm
Words are spoken to be broken
Feelings are intense, words are trivial
Pleasures remain, so does their pain
Words are meaningless and forgettable
Billy Idol-"Eyes Without a Face"
Dahy taught me that male bonding isn't just those wild road trips like the one we made from Santa Barbara to Dallas because we wanted to be able to say we'd been to Texas (no other reason) but it was also the laughter of trying to prove, and succeeding, at making 12 step meetings everyday by calling ahead to Central Office just like they taught us to do. Its the promises we made to each other while in the car, that we thought we'd never have to cash in on, because we really weren't that sick. Male bonding is being there and fulfilling those promises because that's what real friends do.
On our road trips we'd listen to Billy Idol or whatever other crazy tune would come on the radio. We did it just because we could. For those trips we were two little boys on the road. We'd stopped growing at too early an age and this was our time to safely indulge that inner child. Our extent of planning these trips was picking out a destination, throwing clothes into a suitcase the night before, and then grabbing breakfast and lunch at the mini-mart. We were wild, and we were crazy. Actually we both still are.
Godly and Creme-"Cry"
This is the first time in my life that Jane hasn't been able to comfort me. She doesn't know what I'm going through because our relationship was so strange. I've been thinking of a photograph Dahy has on his Facebook, it was taken in January of this year, actually on the road when we drove partway on the PCH to judge the distance for a business trip. After a horrible holiday from his health he had a temporary feeding tube placed in so he could gain some weight back. After a lot of consultation his medical team agreed and he pumped it full of everything he could at the highest dose. So in this photo he's leaning over, his glasses hanging out of his T-Shirt neck and he looked healthier than he had in several years. and that infectious smile of his says there is nothing at all was wrong and we were having an inside joke. In fact, after our rental car broke, we were waiting for a new one but in the meantime he had snuck into the break room where he discovered a NiHi soda machine. He was in heaven.The entire time we were out spending precious time at the dealership he was as happy as a child who had just discovered pirates gold.
I don't have access to download the photo but I may ask his wife for one as it brings back so many memories to me. Off to listen to music very low and then to get that sleep. I can tell by his breathing appears to an have decreased to an shallow breathes with an uneven pattern most likely I'll to be aware of this after all.
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.
