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 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.
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.
Yesterday was uneventful so I didn't blog about it. Today appears to be more of the same. Outside of going to the store and watching Conrad Murray's bald spot growing, its been very pedestrian. The one change is that I am back on my high carb diet. It consists of six top ramen daily. That alone puts my calorie count over 3,000. I also enjoy sugar soda and I haven't cut back on that. I understand this is not a healthy diet, but I also understand how important it is to get the weight back on my body. Even before HD entered my life I had problems keeping weight on, much less gaining weight. Sure it will clog my arteries but realistically the HD is likely to get me first. Being the proper weight, or slightly above it, gives me a nice buffer when I take ill.
------Music break-----
------Is it just me or did Joy Division suck when they became New Order?----
In addition, I really need to get to the grocers. I will take a walk and pick up a few items later, however I do need to get a lot of items at Costco once my anxiety leaves me. That is not today. I walked to the nearby shopping center and didn't get past the first store. My anxiety went from 5 to 7 on a 10 point scale. By the time I got home I was sweating, my arms were plastered to my side and my hands sweating and closed up tight. I made it home and managed to get dinner down me. That's better than yesterday when I lost my appetite over my anxiety.
Other things I did today included watching several Frontline episodes and I just started a promising documentary on Guantanamo Bay I hope to finish before falling asleep. Netflix, Hulu Plus, Amazon Prime and streaming websites in general. I don't have cable as its so expensive and the only time I watched it was the world cup and Olympics. Today I finally saw Pan Am. It was a cute show and I'm already looking forward to next week. Its set in 1963 and took that fact very seriously from costumes, music to the political climate.
Tomorrow Amazon is delivering Credo, the new Human League album on my door so expect a thorough review from me. I also have a friend who is the biggest Human League fan coming over for a listening party and I'm trying to convince her to do a guest column and review of the album here as well. It will be interesting as we have very different opinions on music, although we generally like different bands, THL is one of the few we share. Her taste in music is also much more broad.
I was really glad to see that Wall of Sound Records gave them a decent budget for a video. The video really gets me in the mood to go out clubbing which I haven't done in too long. I don't drink anymore with all my meds, but I still love to people watch. Another thing I'll say about this single and that is instead of using AutoTune I love the way they threw the girls' voices in a vocoder.
Here's another artist that refuses to use autotune.
Not a big fan of either artist but in this song they hit every note perfectly. It was a great match. I first saw this video after my friend recommended it, and she knows I'm not a Eminem fan. As for Rihanna I have never heard a song of hers I could stand, but again she is really good in this and her voice is so melodic.
Now this is music!
Kraftwerk's Autobahn
Just got finished a Facebook chat with my friend and she's willing to review the album AND do a guest post. I'm looking forward to MeekoDev's input here on my blog.
