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.
Over this Spring, my wife and our family are going home to Sheffield. It will be an experience as it always is. For as many years as I have lived in Santa Barbara, I'll always be a Sheffield boy at heart.
The Human League- "Blind Youth"
What you see in this video is literally where I grew up. From the concrete jungle mixed with buildings hundreds of years old to the almost cold feeling that conveys to the musical sounds that came from my childhood era Sheffield is very unique. In fact, this video literally makes me homesick for the better days of my life.
Some cities are simply more unique than others. I currently live in the American Rivera and it is as unique as well. If not such a contrast, I don't think I'd be here for so many years.
Godley and Creme-"Cry"
The main reason behind my trip is that my little sister tested positive for Huntington's Disease. Its time for big brother to step up to the plate.
Another reason for this trip on Spring Break is to take our oldest children to see where their father is laid to rest in North Ireland. Yes, after a year it is time for us to visit the Belfast Child.
Simple Minds-"Belfast Child"
His mother will be coming along for the journey, having chosen to remain here in the States to help raise her grandchildren. This trip will be a sort of homecoming. For Corrine, for my children, and for me.
U2 - "A Sort of Homecoming"
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Since I heard DJ at his first voice lesson on Saturday, I've been in a contemplative mood musically.
Lately there have several major things I was asked to hold in confidence.That is fine, but since I'm a fairly social animal I have a tendency to then hold everything back. Its learning to find my balance again
First in my family another member recently tested positive for Huntington's Disease. I was honestly hoping to take one for the team by getting HD, but it wasn't going to happen.
Depeche Mode - "So Cruel"
Its interesting, this last piece of music. I'm not a big fan of this tune, but I was looking for a song to put here, and my brain kept telling me it would be the perfect place for So Cruel. That is what music is supposed to do, influence how you think.
While I'm on the subject of Depeche Mode, the day I wrote my last blog post I realized my information was a bit off. They were still here until that afternoon working on the new album, I literally missed them by half an hour in fact, being as I was downtown on other business. The same block as the studio. Rumour is that they will be coming here to work so we'll have to see if its going to be another Santa Barbara Sound Design LP like Playing the Angel and the (Bare) rerecordings were. Personally, I love the vibe that studio seems to send the band home with.
Destruction Rock at it's best. The first half of today's double feature:
The Police-"Synchronicity II"
On another note, there was some information Dahy's mother did not want to know about her son's final days. Jane and I have no problem with this. We understand and respect their relationship. There's another person who felt differently and took it upon themselves to inform her in a way in which she would not have a choice but to learn. This person felt that they knew better what his Mum would want to know. Needless to say discovering that she was informed of this and then having to field questions to settle her mind was not a pleasant experience. She had wanted to go at this time not knowing, who are you to question whether her decision was the correct one to have made?
The Police - "Every Little Thing She Does Is Magic"
She is a lot like her son that way. Unlike me, who feels I need every piece of information to make a well informed decision the Kelly's seem to have a strong belief that they don't want or need unnecessary information.
Pink Floyd - "Another Brick In The Wall"
Last November after Dahy's test results had come back with a very high viral load and dropping CD4 count. That meant he was becoming resistant to his meds and at best it was time for him to try something new. At worst, it was time for him to get his affairs in order.
We went down to Los Angles to see his doctor. Dahy sat down, listened to a quick briefing and then asked three questions. We left five minutes later, he went and filled a prescription for two tablets, swallowed them and proceeded to (try to) work for the remainder of the day. At 4:00 in the afternoon we drove back to the doctor's office and he let the appointment secretary know that the medication made him too sick for a less than 25 percent chance of working.
Simple Minds - "Belfast Child (live)"
How the hell does someone make a decision like that? I never could. It is not enough to make an informed decision to discontinue medical treatment. For my friend, anything past that small amount of information would only cloud his process over a life and death decision.
If I can't respect that in my best friends and family, then what does that say about me?
Frankie Goes to Hollywood-"Born to Run"
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I hope this isn't too choppy. Its taken several days to write this as my internet time is extremely limited until I get the hell outta here Monday.
The Bangles-"Maniac Monday"
My wife has decided that we will take in David's children. So baby will make five in September. Our family is growing by leaps and bounds. Its enjoyable to watch from the sidelines but it will be interesting once I get home. So much for the single man who didn't want children who started this blog last year. Sasha and DJ are seven years old and so adorable. Yes, I said those kids are adorable. Do you rake me over the coals now or later?
Peter, Paul and Mary-"Puff, The Magic Dragon"
This morning my wife called my Huntington's Disease doctor all the way from North Ireland where she's visiting David's mother. She is having a enjoyable and needed trip. I'm so glad she went.
This is for my wife, who's currently in love with Night of The Proms.
Simple Minds - "Belfast Child"
After this call they put me on Klonapin. It's helping my hands from bouncing off the keyboard all the time. They took me off the Xanax when I came in. They took me off everything and then played around until they found drugs they think are working. They're doing something right because I don't have the crazy need to listen to the Depeche Mode's Black Celebration album all the time.
Yes, I was literally living through thoughts that dark. It should have been a warning sign to me. Instead of looking out out for myself with all these flags I just went about my daily business while I had this album on constantly.
Depeche Mode-"Black Celebration"
Is it any amazement that I drank after ten years of sobriety? I lost my best friend who died literally in my arms with his beautiful children at his feet, I didn't reach out to my wife since she was also grieving, causing us to begin to heal separately instead of doing this important act together. Then my depression kicked in, instead of treating I let myself fall into the black hole. I let myself stay there. I didn't do the things I know would help me get out of it. Instead of focusing on my recovery and sobriety I let myself focus on all the pitfalls in my life and my program. Once I start nitpicking my recovery message, that is a sign my thinking isn't quite right.
Human League-"(Keep Feeling) Fascination"
I am finally starting to feel better over all of this. I'm learning that I don't need to live constantly in a state of bereavement. Life does go on and its time for me to accept that and live it. David would not want me holed up in a room drinking and using. I know this because he didn't want that for himself.
There is a saying in the program that it is basically one alcoholic/addict helping another. When I lost David, I lost a major lifeline to my sobriety. Instead of doing what I should have, like raising my meeting attendance, I did the opposite and started isolating.
Eminem - "Not Afraid"
Well, its time to wrap up so I can have enough time to get this posted to my Facebook. Thank you for continuing to follow me on this journey known as my life.
I managed seven hours of sleep last night. I'm still yawning but feeling better than I did yesterday when I was running on only two hours of sleep and a migraine headache. The two days before I was running on six and two hours of sleep.
Lionel Richie-"All Night Long"
So I was on YouTube this morning when it recommended "I Need Your Loving" by the Human League. I made the mistake of clicking on the link. Two minutes into it reminded me why I have only played Crash once when it put it on my phone. I mean, it really doesn't get any worse than this. It was funny in a sick sort of way, like watching a car crash. Let me just say it was so bad I don't want to contaminate my blog.
Seriously, it reminded me of why the band pulled out of the sessions leaving the producers Jimmy Jam and Terry Lewis to finish the album without them. I mean, they had to finish it with session musicians because the band walked out.
Need I Say More?
The Human League-"Circus of Death"
Today I am able to fight my headache. I have knots on both sides of the base of my skull. The pain is radiating to the top of my head on both sides. That's why I haven't been online much of the last few days. I should have known I was sicker than I had thought when people on Twitter noticed my absence and were concerned.
Simple Minds-"All The Things She Said"
I don't know what caused this migraine but its an extremely vicious one that just keeps coming back. I finally talked to my psychiatrist about it last night and he called in some medication (I don't have a primary care doctor yet). It was after pharmacy hours so I can't pick it up until tomorrow as all the ones around here are closed on Sunday. At least I know an end is in sight.
Today's Double Feature, the late great Whitney Houston
Whitney Houston - "I Wanna Dance With Somebody"
I'm still in shock over Whitney Houston's death. Although not a big fan of her music, I always liked her voice. I share many memories of her with my sister who loved Whitney. I bought my sister the first two albums by Whitney when she was a kid.
Whitney Houston-"I Will Always Love You"
My sister had this 45. One day she came home and proceeded to play it over and over again. I finally snapped and tore it off the family stereo, proceeded to stomp on it and then snap it in both directions. I've never seen vinyl shards like that day. As a big brother I then felt bad so two days later I bought her the entire "The Bodyguard" soundtrack. All was forgiven and I no longer heard this one song over and over again (I had stopped counting at 20 the day of the record destruction)
Although I have a lot of musical respect for Whitney, I still much prefer Dolly Parton's original recording of this gem.
Dolly Parton-"I Will Always Love You"
"Mine is only one of the millions of hearts broken over the death of Whitney Houston, I will always be grateful and in awe of the wonderful performance she did on my song and I can truly say from the bottom of my heart, 'Whitney, I will always love you. You will be missed.'" Dolly Parton
I've been reading near constantly. Its the only activity that is helping pass through the pain, and it helps me to escape. When I'm able I have been playing Depeche Mode or Human League.
Depeche Mode-"Master and Servant"
My choices have been eclectic at best. My choices by Depeche have been very down the middle of their catalogue while my choices of Human League are the exact opposite. I've been playing music from the earliest and most recent CDs while ignoring their more famous albums altogether. Its rather odd.
The Human League-"Night People"
Credo is more trance than anything, and lately I've really been enjoying this style of music.
Paul Oakenfold-"Delerium Silence"
Oakenfold has always been my favourite trance artist & DJ.The man is brilliant. Also I don't feel so old when I listen to his music. He's six years older than me and rocks the house, so I see hope for me yet.
Berlin-"The Metro (extended)"
My ear today has been on bands that are fronted by women. From Berlin and The Motels to Bananarama and The Go-Gos. There were quite a few women in bands back then. Add in others in duos like Allison Moyet and Annie Lennox to really round out a good afternoon of musical choices.
The Motels-"Suddenly Last Summer"
This song by The Motels always brings back strong memories of my last carefree summer. It was released right before I went completely into SynthPop and was listening to a lot of American pop music. In fact, I can list all the British musicians I enjoyed on one hand.
U2-"The Refugee"
I did not get a true appreciation for U2 until I was an adult. Looking back, their early music was too heavy for me to understand. Same way with Depeche Mode. I liked their first album Speak and Spell, the rest of their music had to wait until I matured.Now I will travel half way across America to see either of these bands live. Like Peter Gabriel, they know how to rock the house down.
On that note, I'm going to close with a live version from each of these folks. Put your headphones on, turn the volume up high. These artists are going to take you to places you thought you'd never go to.
Enjoy.
Peter Gabriel from the This Way Up Tour 1987
"Lay Your Hands on Me"
Depeche Mode on Touring The Angel 2006
"Enjoy The Silence"
U2 on The Joshua Tree tour
"Trip Through Your Wires"
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.
Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.
Before I say anything else, I want to thank everyone for their kind words the last couple of weeks. They mean more than you know.
I've been so quiet lately simply because I don't want to talk. Its a symptom of my depression from Huntington's Disease, but more than that I've just been contemplative. One thing I have been doing more of is reading. The Kindle has really reopened the world of books to me.
Howard Jones-"Things Can Only Get Better"
On top of the lack of initiative is a splitting headache and a malaise I haven't been able to track down and life hasn't been the cheeriest this week.
The good news is my cat is doing better. Once I brought home the money in case I would have to take her to the vet and she started eating, grooming herself, using her box, and even playing with her sister again. If I didn't know better I'd think just the fact she knows she has an out has brought her comfort. It wouldn't surprise me. She's a very smart cookie.
Human League-"Blind Youth"
Lately I've had early Human League running through my head. "Blind Youth" and "Empire State Human" aren't the most melodic songs to be stuck on repeat but this last week I haven't been able to shake them.
The Human League-"Empire State Human"
Adding Heaven 17's Temptation to my mental trio and you could say my head's been in a Martyn Ware state of mind.
Heaven 17-"Temptation (Original Demo)"
Between the Namenda and my Kindle I've found myself spending most of my days reading again. Its driving Jane up the wall because I'm so quiet again she's having to adjust.
Bronski Beat and Marc Almond-"I Feel Love"
When I'm not reading we've been taking advantage of the new couch and having the telly hooked up to Netflix and DVD players. We've been watching a movie together most evenings this past week.
Fellow Sheffield United fan P. d. Heaton
The Housemartins-"Flag Day"
The Housemartins-"Get Up Off Our Knees"
One thing I did manage to accomplish this week was setting up a blog for my wife. She had decided she didn't want full read/write privileges here as she doesn't read my blog on a regular basis (she feels more comfortable giving me space to write my thoughts without her having to intrude by reading them.) Then I moved her posts from here onto her blog, so all of her writing will be in one place.
The odd thing is this week I just haven't been on the computer that much. Facebook is checked once a day, I'll send a couple tweets on my phone, and that's about it.
Tracy Chapman-"Fast Car"
In all honesty, I've been future tripping a lot. The problem with future tripping is that when you have Huntington's there isn't much in the future. Things my mind have been focusing on include how I will die, when I will die, and my relationship with others at the time of my death.
Simple Minds-"Alive and Kicking"
I'm not doing this in a depressed sort of way, but more of a factual sort of way. My therapist said its because I'm in the final stage of facing my HD: acceptance. For obvious reasons this has made me introspective.
Depeche Mode-"Enjoy The Silence"
This isn't something I can talk about. My wife wouldn't understand because she's not in my body, I don't feel comfortable talking about it with friends, and to be honest there isn't much to talk about. Where I am is more of a state of being than a set of thoughts.
The Cars-"Drive"
My mum has also been on my mind. I wonder about the afterlife, if there is one, and if I will ever see her again. Sometimes lately I just miss her. I want to hear her laugh, see her smile, and be there for her when she cries. This is my way of saying "Dammit, sometimes I just miss her."
Its times like this that I loathe HD.
Mike and The Mechanics-"The Living Years"
At the same time I wonder about my wife and our child: how much will I be able to see of their lives, what and how will they see mine, what will we have the chance to experience together?
Rent Motion Picture Cast-"Will I"
These thoughts are actually liberating. Its as if they were being held back by a mental.wall, and now that its down everything is rushing out like water behind a dam. When they stop running it actually feels cleansing.
Because no matter how hard we look life is just a bunch of
Small Circles
The Rainmakers-"Small Circles"
G'Nite now.
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.
Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.
The heat wave has extended to today. In fact, its actually warmer today currently at 77 degrees. Yesterday both Jane and I were in horrible moods from it so today we are remaining inside in the coldest part of the house.
Talking Heads-"Burning Down Te House"
Its three in the morning and our house is filled with laughter. My wife found a really funny radio host who is going on about Michelle Duaggar. Despite the heat, there has been so much laughter in our house tonight. Jane took a nap, she gets tired easily right now, and then when we woke up its just a bunch of fun. First I watched the Charlie Sheen Roast simply to enjoy something where I can't think.
Here comes today's Double Feature-Thomas Dolby
Thomas Dolby-"Hyperactive(12")"
I'm really noticing a difference when I don't take my Namenda. When I don't take it, I can barely read. Someone asked a few days ago if I noticed a difference. At that time I said I didn't know. After missing a day I can say that I really do notice a positive change.
Thomas Dolby-"She Blinded Me With Science"
Since I'm not able to read well and this heats puts me in such an awful mood I decided to watch the dumbest comedy I could find. That would be Charlie Sheen's Roast which is available on Netflix streaming. I surprised myself by laughing through most of it.
One thing about Huntington's is it can make your emotions basic and in your face. I was very irritated earlier today, and that often turns into anger. That's why I turned on that show. I can't make my mood, but once its there I can do things like watch that show to try and mute it or even switch it to a more positive mood.
Harry Nillsson-"Everybody's Talking (full movie version)"
As someone with HD, I now have mild chorea. It can become visible when I'm walking if I'm having a bad day. Then everybody is either looking at me or turning their eyes to avoid me. I hate that.
My symptoms haven't been getting any worse but lately I've just been feeling like I'm a burden on others. Even things that are part of my normal life are now affected by HD. From having to shave with an electric razor to cutting up my food so I don't choke I really am feeling the reminder of my eventual death in nearly everything I do.
the best part of Star Wars:
John Williams-"Star Wars Theme"
When I get this introspective my wife reminds me that I'm still independent and that she loves me the way I am. Still at times I don't feel like I'm the same human being as the normal healthy people around e. I feel separate and different.
Orchestral Manoeuvres In The Dark-"If You Leave"
Sometimes I feel so lousy lately that the only thing that makes me look to the future is our baby. My therapist says its not depression but introspection. She said that I'm finally facing my HD head on, and not hiding and pretending its better than it is. She said that alone can not only cause the introspection but acceptance.
Simple Minds-"Alive and Kicking"
She talked about the steps of dealing with death. According to my therapist I'm going through these five steps, and by accepting my death I'm also accepting my illness. According to her I've been in denial for many years. I don't know if I did stay in denial all that time but I do know I'm learning a lot about myself any illness from the point of view inside my brain. This is an interesting theory, and I can see how she got me here. Its so weird to accepting what is wrong with me instead of pretending it doesn't exist and all is well.
Another one I played was "oh, I had X symptom but it really isn't that bad". Now I am working on just being able to admit it and go on.
Sparks-"No.1 Song in Heaven"
Another point that I'm realizing is that by accepting my death I'm also accepting my life. Now I can see Jane's pregnancy is such a gift. Its something that I look forward to. Now I have the mental junk out of the way so I spend time thinking about my future. I can sit down and really enjoy something just for the sake of enjoying it. It doesn't have to have any other reason to be done, but my action is just there for the sake of it. If I'm listening to music maybe, just maybe, it can be for the simple fact I find enjoyment in it. There doesn't have to be a higher meaning.
So here we go, I'm choosing this song because when I hear it I think of my life. From my birth until my death its the long way home-I'm here for the journey, and I am letting go to enjoy every minute.
SuperTramp-"Long Way Home"
I'm going to get some sleep, and I hope we continue to cross paths on this journey.
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.
Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.
I had a nice, quiet but enjoyable New Year's last night. I had been invited to a friends birthday party but decided to stay at home with Jane. I'm glad, it was a nice enjoyable evening.
Today's music is curtosy of 80sMusicGirl. She played these 80s songs last night.
Swing Out Sister-"Breakout"
I'm starting to settle down to the married life. I must say I enjoy it. Although I didn't think it would change me, I was wrong. Suddenly I feel safer. Our relationship is so much more stable. Its almost as if we are able to read each others mind more so than before if that makes sense.
ABC-"Be Near Me"
This morning I woke up too early so I only got four hours sleep. I don't feel tired though so I'm making breakfast while I type. I'm back on a diet to gain weight. I'm not as thin as I was a year ago but I need to gain extra weight so when I get chorea later I'll have the calories to burn.
Go West-"King of Wishful Thinking"
One thing I've been flirtiing with is my ability to become a citizen in three years. If my Huntington's Disease doesn't make it so I don't have the brain power to take the citizenship test, I likely will prepare myself so I can vote at that time.
People ask me why I want to become a citizen as I will have to give up my right to vote in England. I'm simply here for so long that I see some policies I don't like. It would be nice to have a very small influence on them.
Prince-"Let's Go Crazy"
When this song came out my little sister teased me that this is my theme song. This one is for her. She's thinking about having the test for Huntington's Disease. Since our mother had it, all her children have a one in two chance to carry the gene. If she tests positive for having the gene she will eventually get HD. I've told her I'll fly out and support her when she goes in to hear the result. I remember when I went in to have my results announced I was thankful Jane was there, even if I already knew I had HD. I had the test so I'd know my CAG repeat count. As I've mentioned it is the area of JHD. I was thankful that she was standing there while I was on the phone. I don't know how I'd have managed that otherwise.
The Go-Gos-"Vacation"
I'm reading a lot more since I got my Kindle. Something about it makes it easier for me to comprehend what I'm reading. I'm not sure if its the font or spacing or something I'm completely unaware of, but its nice to have the old habit back. The book I'm currently reading is Blown For Good-Behind The Iron Curtain of Scientology by Marc Headley. I've wanted to read this since my reading first went down the tube. At 50% completed I must say it was worth the wait. Headly takes you inside the Int Base, the intitution where not only are the "Church's" movies are made but also the home of leader David Miscavige.I highly recommend this book.
Orchestral Manoeuvres In The Dark - "If You Leave"
My wife and I have one week to go until she will be ready for her doctor to remove her eggs for fertilization. We are like little children waiting for Christmas to open our gifts.The IVF drugs are making her moody, but not half as bad as expected.
Simple Minds-Don't You Forget About Me"
Well, I'm caught up. Thank you for reading. I hope the rest of your day treats you well.
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.
