Friday, 27 January 2012

Journey of Life

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.

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1 comment:

  1. Paul,
    It feels like I am going through the same steps to accept my gene-positive status, except right now I feel like EVERYTHING is a symptom. Excellent post but I have a question. It's unclear to me about the Namenda... can you read better with it, or without it?
    Love to you and Jane and baby,