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'm off the Lyrica. That was making me so sick yesterday. I couldn't read or do much of anything. Today I feel a little edgy but that is to be expected. Originally the doctor was going to put me on another mood stabilizer but he called me late last night and asked me if I'd taken it yet. When I told him I was waiting until this morning he asked me to hold off on taking it for a while and we're going to see how I'm doing without it. I've expressed to him my frustration on being on so many drugs and he understands where I come from on that issue. So for now that drug is out of the picture as well. I wish all of them were out of the picture but I understand his concerns. What I want isn't always what's best for me, and I know that. I don't have to happy about it, but that is reality. So for the day I'm not going to be taking any stabilizer and we'll see if I start getting really jumpy. I feel a lot more "with it" than I did a week ago.
Giorgio Moroder's Oscar Winning Soundtrack "Midnight Express"
I was looking at my Facebook this morning and a post by HappyPlace.com caught my eye. Seeing is believing and I laughed so hard I almost bust my gut.
This has been an extremely exhausting month for me. Not only did I have the holidays but I started off in the hospital. When I came home I read that a fellow blogger had chosen to be tested for the Huntington's Gene. So was waiting for her results. Another fellow Facebooker was also waiting for her tests. I was waiting with anticipation for their results as much as I had waited for mine. Its as I once told a friend of mine on Facebook, when you are dealing with HD you already know so much about a person. I know you are going to have bad days, and those bad days are going to suck threefold because its combined with the built in depression that comes with HD. So your bad days will seem twice as bad as they really are. I know that you came from a family of some dysfunction. When you have a disease that has been perceived as a mental illness society told us to hide it away. This naturally causes a dysfunction of the family unit. So I know that you are used to hiding things, just as I was. I also know that you come from a family where you have experienced death. Its not the unknown factor when you have lost a parent to HD. You've learned already how to grieve. I know all of this about you before our computer keyboards met.
Giorgio Moroder & Philip Oakey - "Electric Dreams"
Both of my friends are free of this nasty genetic illness. That's what I call it, and my brother always tries to correct me when I use it in his presence. He always tells me "I'm not truly free." but he is. He is free to have as many kids as he wants and to save his life insurance for old age. He is free to go and do whatever he feels like as long as its reasonable. I don't have these options. Never did, and never would.
Am I jealous of my brother and HD-negative friends? Of course, if I said I wasn't I'd be lying through my teeth. At the end of the day I count my blessings and I get ready for the next morning before I go to sleep. That's all I can do. I've never lived in his shoes so I don't know what its like, just as he's never been in mine.
This is my only escape from it all
Watching a film or a face on a wall
Robert DeNiro's Waiting...Talking Italian
Bananarama
Off I go tonight on my totally artificial mood cloud. Sometimes I wonder what emotions would exist if I stopped all medications. I'd probably be depressed but what else? I do know I get very agitated at times, in fact that's always the one thing that I recognize and will bring me in for mental help. That's what brought me in when I was drinking and what I felt when in the hospital when I finally decided I might trust the shrink. So I'd be an agitated depressed guy. There are enough of those around, I think I'll trust the medication for now.
You learn something new every day. I was looking up side effects of my Lyrica today because I've been extremely nausea since my doctor raised my meds last week. I know it's not Haldol, that prevents nausea, so I've been working my way down through the others.
Then I came across this side effect. Its scary simply because not a single chemist nor doctor has brought it up to me. If you are a male, and on Lyrica it causes birth defects.
That's not an issue I need to worry about, but the fact I slipped through the cracks like this is scary. I consider myself a fairly well informed person.
Rod Stewart-"Young Turks"
Now if I could only find out what is making me feel like I'm sailing on constant rough waters, life would be much better. It isn't made any easier by the eye shifting issue either.
Geeze, I'm really whining today, aren't I? Sorry about that. Trust me, things could be a lot worse.
Bruce Springsteen-"Dancing in the Dark"
Well, I'm off to rest for a bit. Jane took the day off to watch me, so I know I'm probably green around the gills. Sitting here watching music videos isn't probably making her feel useful either.She's starting to get that mother hen look about her. Last time I saw that look was when I got pneumonia. She doesn't take prisoners.
Have you ever taken a train to the end of the line? One year I did this. I was taking Amtrak from Santa Barbara to UCLA Medical Centre and then on the spur of the moment decided to take it to the End of the Line in San Diego. Once we arrived, we stayed in Diego until the train reversed several hours later and took it home. It was a beautiful trip up the California Coast, and something I'd like to do again.
Yesterday I saw something that just appalled me. You know those things that make you physically ill? I saw one of those things yesterday.
I was at a friend's home. She's having a terrible time this holiday season because she lost her mother to Huntington's Disease this summer. While I was visiting yesterday, her half-sister (on her father's side) outright said that A) its not healthy to cry privately during holidays and B) as far as this sister is concerned my friend might as well go and kill herself. These things were not said in haste, they were obviously thought out. Many children of parents with Huntington's know that there is almost a ten percent chance a HD patient will take their own life. One of the many reasons is simple, a major symptom of HD is depression.
I swear I almost knocked this sister down and if she wasn't a lady (which is debatable) I would have. Oh, did I mention my friend's mother did end her own life as well?
David Lee Roth-"California Girls"
When I lived in England I thought this video was a parody.
Then I moved here and realized it's the truth.
The Beach Boys-"Kokomo"
Rupert Holmes-"The Pina Colada Song"
This is one of those WTF songs. Can you imagine sitting down
to write a song about having an affair?
I woke up early this morning to Jane's "Best of Harry Belafonte" CD. Sometimes I need to feel that soul. So instead of a double feature, I'll be playing four Belafonte tunes today.
The thing about Harry is once I start listening to his voice, I can't stop.
Harry Belafonte-"Abraham, Martin and John"
Some performances are so good that even
the scratchiest LP can move you.
Harry Belafonte-"John Henry"
Harry Belafonte and Odetta - "There's A Hole in The Bucket"
Harry Belafonte-"Jamaica Farewell"
Yummm...So I'm sitting on my bed listening to Harry, while eating Peanut Brittle, Aplets & Cotlets, and Dutch sugar cookies. Between all those sweets and music I'm in heaven. Oh, did I mention the four boxes of Bob's Candy Canes? How about we forget about them.
Actually, this food is good for me. For reasons unknown, people with HD consume A LOT of calories. In fact, we'll go through 3,000 - 5,000 calories a day just to maintain our weight. In my case its even worse because my CAG genetic repeat is three times the normal of most HD patients. The higher your repeat, the more calories you consume. If you are a "normal" person reading this blog, you run a CAG repeat of >28. If you suffer from regular HD, your CAG repeats should be between 28 - 39. A child with Juvenile Huntington's generally stops at 100. My CAG repeats went over 150.That's a lot of See's Candy.
So that's my justification for eating all these holiday sweets, and I'm sticking to it.
If your only glimpse into my life is this blog, then you probably aren't aware that this year has been a lost worse compared to most. I don't know what exactly is going on but I'm begining to think it just might be that right now my life feels a bit empty. I'm not working, I had the HD Genetic test, and of course my unexpected CAG repeats
I saw my shrink Friday for two hours. I had called him Wednesday to see if he could fit me in this week. He heard my voice and said "my office, now, stat" The funny/odd part of it is that the "emergency" he heard in my voice was actually me trying not to tell him about the engagement until I saw him in the office.
John Lennon-"Woman"
So I get there, pour my cup of tea, open up People Magazine and promptly spill the hot Earl Grey all over my lap. No, I'm not kidding.
You don't want to know how bad it hurt. Just trust me on this one.
Van Halen-"Jump"
That's Eddie on Keys
After two hours of talk, he upped my my antidepressant, mood stabilizer and Haldol. He's concerned that my mood isn't congruent. Gee, don't know what would give him that idea. He's also seriously concerned over some of the Huntington's Disease affects, specifically mild shaking, OCD, and depression/anxiety. I had forgotten last year the holiday stress was really awful too.
My mood is driving me crazy still. I'm so happy to be engaged but the next minute I feel lonely. What I'm really surprised about is the fact that I'm actually cheerful to have plans to be married. I never ever ever would have seen this in my future. I'm more likely to open a Chinese Fortune Cookie that says "This is iyour unlucky decade."
Last thought for the night: Jane and I spent a lot of time talking. Bringing children came up and I let her know that my mind might be open to the possibility. My only concern is bringing up a child who would grow up without a father and a fifty percent chance of a 150 CAG repeat. Then Jane's rational voice pops in and says "but its still only a 50% chance"
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
Its four thirty in the morning, I can't sleep and thoughts are racing through me head at lightening speed. I'm trying to get them written out so hopefully they'll go away. I know sometimes it helps. I may or may not publish this, either way it won't be my main blog entry.
My mind won't settle. If its not tripping on my mum its tripping on a dear woman I know through facebook. She suffers from JHD (Juvenile Huntington's Disease) and its been very hard for her the last few days. Finally today she had to be taken to the hospital for her symptoms. Those that don't know JHD causes different and more severe symptoms than HD. Luckily they were able to pull her out of the event but it took two hours and she had to be poked in a main vein to get her treated.
Pain-Eleanor Rigby
Warning-Goth/Metal
I saw a video today of a local Occupy Protest. In this video was a woman receiving a citation and another man. Both of them I know personally from outside the Occupy movement. It upset me to see them looking at possible arrest for doing nothing but meeting in the daylight in a public park. Sometimes I get so angry at this crap. These are as good of people as you'll ever see. So society craps on them for giving a $hit? This video brings all the news I've seen and heard about people abused by police to a new light, now that people I know are affected. Does that make me selfish or human?
Hair Chorus-"Walking In Space"
Third, I have my godson's gift packaged and ready to mail off to the UK today. Only problem is I don't want any contact with his mother after what she told Jane yesterday. Would you? Yet I don't want him to pay. This particular gift is very personal however, and I don't want to give Kris any ammunition for the future.
Paul McCartney-"Put It There"
I chose this song because of the nature of my relationship to Kris's son. I don't have to be his father to have that type of relationship. My long distance mobile phone bill is living proof of that. Yet he's worth every cent and I'd do it all again in a heartbeat. In fact, he's already on our wedding invite short list. Ah, screw her and the horse she rode in on, he's getting the gift.
Fourth, as I've mentioned before I'm having a crisis of faith, or should I say non-faith. I'm thinking one thing rationally but my heart is questioning. I actually prayed for someone today. To whom did I pray I couldn't tell you but I still did it. That's something I haven't done since a year after Mum's death. It was a surreal experience but on the other hand knowing I'm not alone would be a nice thing too.
George Harrison - "My Sweet Lord"
Finally, this whole suicide thing is sitting on me. When does it stop being selfish and start becoming fair game? Or does it ever? Is it selfish to want to avoid an extremely long, protracted illness in which your brain breaks down until you can't control your body and you either suffer a heart attack or die of pneumonia? Oh wait, there's a third door, you can refuse a feeding tube and starve to death. Yeah, what a choice. Of course, if you are lucky, your brain has now broken down so much you aren't aware of your impending death any longer. Your emaciated body will welcome it. If there is a God, does this send you to hell? If so, that isn't a very loving god is it? Where does my will fit into all of this?
Elvis Costello-Veronica
Do I have a right to chose NOT to end up like Veronica?
A friend brought up a good point tonight. Doesn't Jane have the right to know what I'm thinking or does she have to wait until my fear and depression get the best of me? If I really, truly love her aren't I obligated to share these thoughts with her so also has time to process her feeling? I think my friend is right. So this opens up a whole can of worms, such as when and where? How much detail? If I don't tell her, does that mean I don't trust her? Isn't trust an integral part of a relationship?
Paul McCartney-Figure of Eight
which is exactly where my thinking is taking me tonight.
Crap, I'm starting to cry again. Enough of this, I don't even know what I'm crying over. I can't even tell if its a good cry or if I'm crying over something sad. I just know the feeling of warm tears running down my face.
Please, I'm so tired of all this......Someone make it stop.Well, that's not entirely true. I haven't really been the same since I received my test results. Lets be honest, no one who gets HD at my age expects a CAG repeat around 150. Its not supposed to happen and it scares the crap out of me. Also it seems like lately my symptoms are just running rampant, and I know my doctors are concerned the way they are so drastically changing and raising my medications. That scares me too.
Well, I'm going to try to leave you on a positive note. I found this at @GregMitch's daily blog.
"Video from the #occupy bat signal crew. Inside look at this
series of inspirational video projections on the side
Really suffering from a lack of get up and go lately. I want to blame it on depression but I don't know if that what's causing it.
U2-The Refugee
Her Momma says one day she's going to live in America
I had a couple basic errands I put off today for no reason at all. I was saying the reason for my delay was because I was charging my smartphone but it started charging at 50% which was fine for the two hours I was gone.
U2-Stay Faraway (So Close)
Today is the first day in a long time that the house felt empty while Jane was at work. Usually I feel fine doing my own thing as I've always been happy with my solitary time. Today I felt the empty walls. It could be simply everything that's been on my mind lately. That can do it to anyone.
As much as I didn't use my auto, I do miss driving. The public transportation system here outright sucks. The bus line stops running into my neighborhood at 6 pm. There is one bus that runs into Santa Barbara after that, and it runs at 7:30. The good thing is it always makes sure I'm home for dinner.
Phil Collins-"In the Air Tonight"
Some days I really miss working. I loved that job. It was fulfilling to do that type of work. Although much of it was naturally solitary, at times I also worked the circulation desk and had interactions with many of the students. Also, this time of the semester they would come pouring in as they began research for their term papers. One of my jobs was, naturally, to help them find what they needed. Surprisingly, most students did not go back to the reference desk but went straight to the shelves. How many times I came to help a poor lost student find what they needed I can't count.
Eminem-"Not Afraid"
I love the above song, actually the whole album, because he speaks of working on improving himself. That is a message we all can learn from. Specifically I've always been impressed with what he says about getting rid of his demons.
Heaven 17-Geisha Boys and Temple Girls
Just because I can slip it in here
Human League-"Deep Feeling (Fascination)
This song has a long history with me. I owned the EP back home. I didn't move my vinyl music with me as I thought the temperature would ruin it anyway. This was among those I planned to replace once I settled down. What I didn't plan on was that America doesn't sell the EP. Its not a popular format here. This song wasn't featured on their first several greatest hits collection for some unknown reason. So I was stuck without my favorite song for a decade.
Finally I found a new "Very Best of" collection on CD. This did have the elusive track. So I purchased straight off at the Amazon website. This was back in the day, mind you, when Amazon only sold books and music.
I much preferred this performance to the actual video. Its fun to watch the vocal travel down the line as each sings their lines. It was a bit of an ensemble piece, which one doesn't find often in popular music. Its also the last great piece by this incarnation of the band
As much as I like the three L's -Louise, Life on My Own, Lebanon- I abhor Hysteria. Its one of crappest albums they've made and if you've heard Crash you know that's saying a hell of a lot. Its no wonder they went into a tailspin after those two albums (two members left, JoAnne had a nervous breakdown and her house & bandmate Philip suffered from a severe depressive episode).
Another elusive EP is the brilliant Magical Mystery Tour by the Beatles which was only released as a full sized LP in the States, losing the feel of the original.
The Beatles-"Your Mother Should Know"
Tonight turned into something absolutely horrid. Jane came home early from work, and I walked in the door soon after from some errands. First off was the announcement that she telephoned Kris (pseudonym), an ex-lover of mine. We had an eight year relationship that ended when she got knocked up by another bloke and wanted me to raise her child. I refused but we managed to part on amicable terms and I keep in touch twice a year as godfather to her son. The amazing thing is the lad is more religious than either of us, which says a lot considering most of my adult live I considered myself an atheist.
Anyway, Jane called her and they had a "nice chat". I bet it was. Kris and I broke up primarily because of my refusal to raise her baby, but my drinking played too large a role in that relationship for it to survive. I'm the first to admit that fault.
Jane told Kris of her engagement and wanted to know if Kris felt there was something she needed to know. Kris did what most jilted lover's would do, she laid out every horrid thing in our relationship and then some.
The Beatles-"You've Got to Hide Your Love Away"
Jane finally confronted me with "She told me you never mentioned you were at risk of getting Huntington's Disease to her" which was the truth. There was no reason too. I couldn't father children, so I wasn't going to pass anything on to her offspring. I wasn't symptomatic (that I was aware of) so no issue there. I wasn't in a relationship I expected to be in for the rest of my life so no "trust" issues.
I spent the middle part of my life running from this disease, I wasn't going to shout from the rooftops about it. Not then, unlike now. I figured if I mentioned it she would run to the hills.
Twenty-two years ago there wasn't the support for people "at risk" that there is today. We lived in closets, hiding out. We didn't fit in either side of the spectrum. If I didn't have HD, then what was there to worry about?
SuperTramp-"Take the Long Way Home"
So now Jane is thinking if I could "hide" something like that from Kris that I would hide something like it from her. If only she would understand how different my relationship with her is from the ones I've had before. How different I am as well. Instead, my impression is she's thinking I'm going to betray her.
The last few days have been very emotional. Good and Bad, but not indifferent. Yesterday night we went out and I bought her engagement ring. Its beautiful and exactly what she wanted. Saturday was another matter.
You know what? This isn't worth it. I'm going to go and eat my words. Tell her how very sorry I am she's feeling betrayed. Because you know what? I am sorry she feels that way. Its a sucky way to feel.
I probably haven't been on my best behaviour either. The tears on my pillowcase should be telling me that
The insurance is giving me hiccups on my antidepressant, making tonight the third night I haven't taken it. The chemist told me today that if it isn't covered by tomorrow he'll fill a few tomorrow 9 a.m. sharp to hold me over. It would have been nice if the man working Saturday had offered but why look a gift horse in the mouth.
The first of two brilliant songs about New Orleans
The Animals-"House of The Rising Sun"
So out I trot to the living room to find my fiancee crying? WTF had Kris told her besides the drinking, leaving her in time of need (she was the one sleeping around), and the HD. No one upsets Jane without going through me. I go from repentant to pissed in point five seconds.
Ike & Tina Turner-"Proud Mary"
It turns out that Kris had told Jane that I had slept around on her. I did a lot of things in that relationship but one thing I didn't do was sleep around. This was the height of AIDS paranoia when OMG it was infecting the straight population. There was no way I was sleeping around. So Jane was crying thinking I might have done the same to her. I was shocked, and sad, but mostly just angry. I think my instantaneous anger towards Kris for lying answered any question in her mind about whether I would ever sleep around on her.
I still told her about the antidepressant, and she said that made a lot of sense as I've seemed slightly off kilter the last few days. We decided to take the dinners that we'd been cooking parallel to each other, and eat together and then watch Pollock. Its a favourite of mine that she's never seen before. I was surprised to hear that she wanted to see it, but she said a friend at work had also spoken highly of Ed Harris' dream film.
Not many actors would be willing to call in their chips to make a film about a painter. I think it says a lot about Harris's character. If you haven't seen the film, I highly recommend it.
On that note, its been a very long day for me. I'm heading out of here to grab dinner, a movie and some good company before I fall dead asleep.
