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 blog post finds you well. This year for Easter I actually had plans. My children's First Confession was that morning, their Palm Sunday and our Easter.
Ted Neeley-"Gethsemane"
Their father had bought the outfits for them to wear during his last night at home. He hung up the clothes, gave each of his kids a kiss and went off to work. Somewhere in there he managed to drop a note into each of their pockets.
My wife was getting their clothes ready when she found the piece of paper in DJ's pocket. She opened it, read it, put it back and started sobbing. Its been that kind of weekend.
OMD-"If You Leave"
It was a nice day. It may sound sad, but its really not. Its been a time of healing. We are starting to enjoy each other's company and feel like a family. In fact, Easter afternoon we were invited to a friend's house for a BBQ. This is the first time all four of us were invited to do something together.
Somehow last night before this happened I was listening to music when this song came on. DJ fell in love right away, so to not include it would be a crime.
Paul McCartney-"Put It There"
After a while I sat near the stereo and played Music For the Masses followed by Songs of Faith and Devotion. Jane asked me several times to turn it off before the kids started singing Strangelove at school. I thought she was over reacting until this morning. I heard DJ sing "Common Nation" while getting dressed. Its a good thing I put those headphones on before he learned a worse set of words.
DJ has the most beautiful voice. This is the first time I ever heard it. He is the more quiet of the twins, so it was a shock for him to open up by singing as he did. Music runs in that family. I hope he chooses to do something with it.
Jane agrees with me, and we have decided to consider voice lessons. At the least it hopefully will give him an outlet to release his feelings. It couldn't hurt, could it? It might even help him crawl out of his shell a little.
Sasha on the other hand has been very willing to say what is on her mind. As I went in to read them a story last night she just looked up at me and told me she misses her Daddy. I told her that I did too, and we talked about him back and forth, sharing stories.
Depeche Mode (Devotional Tour)-"Condemnation"
Finally, my friend Stella is going to Brattleboro Retreat tomorrow for help with her depression. Stella was recently diagnosed with Huntington's Disease after her positive HD gene test last year. She is understandably nervous about her stay there and I will be keeping her in my thoughts. I'd appreciate it if you would do the same.
So Stella, this song is going out to you.
The Beatles-"Baby, You're a Rich Man"
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.
Well, as you can see I am in the middle of a new redesign. I like it so far, and hope to add more to it as time goes on. Its a bit sleeker yet has more information on it. This is important as my blog is, and will be, read by people who are just learning about Huntington's Disease.
The Beatles-"In My Life"
Its important for me to tell others: having HD is not the end of your world. Yes, it makes you moody. Yes, it makes you less mobile. Yes, before you die you won't be able to talk. Yes, you can still enjoy the company of others, music and many other things. There is a whole space between diagnosis and end of life. Enjoy what you can. Accept what you can't.
The Beatles-"With a Little Help From My Friends"
Today my wife is sitting here at home with me. This morning she had two HD-free embryos implanted so she is off her feet. Hopefully one of them will take and we'll be proud parents. We'll know in ten days to two weeks. Until then, its a waiting game.Jane already asked me if it would be okay for her to pick up a small extra project at work so that she can keep busy after her normal workday. I told her I'd be fine at home alone and very thankful she has something to pass the time.
The Beatles-"If I Fell"
I was looking through the statistics for my blog this morning. The great "The Rich and The Poor " guest entry by Stella of HDTrainwreck is the most read post. No surprise there, its one of the best written entries this blog has seen.
The Beatles-"Baby You're a Rich Man"
My home team Sheffield United Blades are playing the Glovers. I'm following a play by play on my Twitter Stream. I must thank the Blades for keeping this up. It must not be easy with all this pressure. Granted the Glover's are just out of the basement, but still we need the win. It would be interesting to see Sheffield United take on the Owls for a Sheffield only FA Cup.
The Beatles-"Paperback Writer"
The Blades are 4-0 against Yeovil Town putting them in second on the table. We really needed this win, and it was a fun game.
Well, I'm getting sleepy here so I'll sign off.
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 last few days since I've returned from my honeymoon I've found myself having to nearly pull teeth to get up here to blog. My thoughts and creativity have been nil. So why am I still up here?
The Beatles-"Tell Me Why"
On days when I don't blog, I find myself having more depression and anxiety than days when I take time to share my thoughts with you. On days when I don't, my feet are more often than not dragging on the ground when I have to go out and run errands.
Today's Double Feature is Sparks
Sparks-"Tips For Teens"
Sparks-"La Dolce Vita"
Its hard to limit myself to two Sparks songs. Should I pick "Tips For Teens" or "When I'm With You" or "Now That I Own The BBC"
Pet Shop Boys-"West End Girls"
Sometimes you're better off dead,
there's a gun in your hand
and its pointed at your head
You think you're mad, too unstable...
Too many Shadows, whispering voices
Faces on posters, too many choices
If, when, why, what
How much have you got?
In case you haven't noticed I really relate to this song by the Pet Shop Boys. The mood of it is such a low tempo song that when I feel depressed it matches my attitude. It captures my feelings a lot of the time when my Huntington's affects my mood. Often the first sign of my mood turning downward is a penchant for songs like this. When I catch myself humming I'll try and turn my mood around while I have that small window to control it.
Naked Eyes-"Promises, Promises"
My wife is home early. She wanted to listen to the HDView online radio show. Today it features Dr. LaVonne Goodman discussing among other things PGD/IVF. That is the process Jane and I are using to have an HD-Free child.
Its nice to see her and not being yelled at. We have had the worst fights since she started the hormones. You combine those with my HD and the stress we are both feeling to "do it and do it right the first time" about her possible pregnancy and sometimes it feels like a bomb went off in our house.
Billy Joel-"Pressure"
During this period we haven't seen much of each other. Jane has been working late and whenever possible I've been going out for the evenings. Neither of us like to fight so avoidance has been our coping strategy. That has made our time together today all that more precious.
On that note, I'm going to head off and rub her shoulders. Its been a long week for both of us.
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.
"Where R U?" asked my phone silently this morning, its Text Message Screen flashing briefly while I was in my bathroom. On the other end of the line was my neighbour and friend who lives down my street. He was going to drive me to the out of town gathering. The back of my mind had confused 6:15 to 6:50 am. My neighbour had driven my darkened house but not called me. If he had, at least he would have received my just awakened voice or my voice behind running water. The house was darkened in the front, but not the back bathroom where I was. My phone is on ringer but text messages have only vibrated since I first bought it. Since I hate hearing the same sound several times a day when a text message comes through I've always left it in this default. Today was the first time where it would have mattered whether it rang out loud or not.
Paul McCartney rarity-"I'll Give You a Ring"
Had a friend who owned the rare clear Japanese Yellow
12" vinyl disk. B-side of "Take It Away".
So when I went by his house at 6:50 he was gone. I called, got his machine left a message as I walked home. I drank the rest of my coffee, downloaded a couple free Kindle Books for my Android (my Nook App is still acting up, not allowing new downloads days at time) and my eyes hit my lunch bag. You see, last night at 9:00 pm my friend told me the time he was coming and that I needed to brownbag a lunch. Unlike the usual gatherings, they weren't serving lunch. I didn't have time nor the food to put together that quickly so I hit the deli service at the local supermarket and proceeded to make a nice deli sandwich with fixings for the long day. I had been eyeing that lunch since I made it.
The Carpenters-"Rainy Days and Mondays"
I felt like crap. Here I was, didn't know why but my ride had taken off, and I was stuck at home with my lunch next to me on my bed. On went the computer. I got on Twitter, noticed Greg Mitchell, one of my current favorite Non-fiction author,'s book on the Death Penalty was free on the Kindle for one day only. I quickly downloaded it. Then I picked up my phone, opened the book and started to feel sorry for myself this cold and lonely morning where I'm already really tired from the long day ahead with little sleep.
The Beatles-"For No One"
So I proceeded to drink another cup of coffee while I waited for my friend's return call. When it came later this morning, he was almost at the destination and let me know I had called when he was already in Los Angeles County. "I wouldn't have been if you called all along" I mumbled but only loud enough for myself to hear. After hanging up and barely avoiding the guilt trip in his voice I wasn't happy. How dare he try to pin this on me by saying he drove by my house slowly and it seemed darkened. It wasn't until after this call that I noticed the text message blinking. "Where R U?" It asked at 6:22 am. "On the toilet," I replied to myself as I saw the time stamp on the message.
The Bee Gees-"You Should be Dancing"
Well, that call followed by the discovery of a text message brought me to awareness of my friend's actions, only not. What I had become aware of was the fact we both may be in the wrong. I can live with that. So the next big question was what to do with my new caffeine fueled day ? The answer was staring me right in my face. I had Mitchell's new book and my sack lunch. Let 'er rip open!
Cher-"If I Could Turn Back Time"
Now that my lunch is near finished, my book being charged, and my Pepsi half gone I'm ready to curl up for a nap. I may be loaded to the gills with caffeine but my full tummy, sleepless night, and good book were exhausting enough, in a good way, to relax me. So pajama time it is. I may just get some sleep. And if I don't? Then book time again it is. There are worse things around & its nice to be able to read fairly well again. That was one symptom of my HD that slightly "improved" when I stopped taking my old mood stabilizer. You know what else? When I was walking back home earlier this morning I realized how write my fiancee was about wanting me to stay home today. I really am not ready to be gone for a whole day on an out of town adventure. That would be pushing my recovery a bit much. Hopefully next time I'll realize this before I make the plans to go.
[SPACE] The Final Frontier...
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. Just don't text me expecting a drop my hands reply.
Considering all that's happened lately, I feel absolutely normal. I've been so busy feeling like a person with HD that I was beginning to forget what its like to feel like a normal person. With all of these "normal people changes" happening in my life, its making me feel more like the average person on the street.
The Beatler-"Baby You're a Rich Man"
Jane finally signed up on Facebook yesterday. That means I can't walk by her humming "fool on the hill" any longer. Its also why I chose this song. If you've seen The Social Network, you know why. If you haven't seen it, run don't walk, over to your computer and log into your Netflix Account. and put Social Network at the top of your queue. Its a really good movie.
In all seriousness though, I did post this on her FB wall at noon: *duck*
"The Social Network"
There is a photo circulating around the Occupy movement of Occupy Los Angeles. You know the old saying a picture is worth a thousand words? This one is worth two thousand.
When I posted this photograph, several people pointed out the similarities between this situation and Kent State (as well as the Isla Vista riots). So I think its as good a reason as any to play this powerful song:
Crosby, Stills, Nash and Young - "Ohio"
Back to the Facebook thing, at first I was really concerned that Jane would be breathing down my neck, but then I reminded myself we are both adults. I asked her if it would be an issue if I blocked my blog posts from her. She asked if I could actually do that. I told her that yes, you can choose who can and can't see any post. Then she said that after the issue a long time ago where I had been upset over the fact she had read my tweets behind my back she would never do anything like that again, and the fact I can actually block her from seeing my Facebook blog posts made her feel better.
The Beatles-"Get Back"
On another note, Sunday night we talked some more about parenthood.
By this afternoon, I've already gone to see the fertility doctor, as Jane had made appointments for both of us "just in case". Outside of the threat of the "scary needle" it wasn't bad at all. Now all we have to do is wait to make sure this is what we both want to do. I know this is what I want, but it will be weeks to wait for the procedure.
We also have the wedding to tend to first (how dare we!) , as well as taking quite a bit of time to make triple sure this is what we both want to do. We both agree that the worst thing is going through the process and then regretting it later.
Neil Diamond-"Hello Again"
Last night we listened to The HD View online radio show. The subject was obtaining disability and it set both of us talking about the symptoms of Huntington's Disease and what the government looks for when people apply for SSI and SSD. Its sick that you have to suffer from physical symptoms before you are eligible for government assistance. Looking back now, I was very lucky that I was able to get on SSD for my Depression. It would have taken me forever to get on it for HD.
This weekend I began a nasty cough with a rattle so I'm going to lay down and if it doesn't get better by tomorrow I'll hit the Walk-in clinic.
Have a great evening, and eat anything more healthy than the Taco Bell I had for dinner.
Getting tired. Very very tired. It feels like that all the time lately and its probably very true. I have been doing a lot of things that a month ago I wasn't doing. I was just laying in bed, reading my little live away. Now, yawn, yawn, I'm actually doing something. Granted it might not be a lot but it is deferentially something more than what I have been doing in the past.
Kraftwerk-"The Robots"
I'm yawning myself to sleep here. Don't have it in me to keep going but I do. Jane finally got on my case yesterday when she came home and I was still typing away on my telephone at the dinner table (not during meal time, mind you). She was asking if I was on Facebook. I wasn't, I was on Twitter but no need to mince words. I denied that I was on Facebook. I wasn't. I was on Twitter.
The Beatles-"Baby's in Black"
Twitter was actually not my vice until a few months ago. I rarely used the computer outside of gaming. I never used the internet for much of anything outside of looking for a library book for someone else. There was no need for me to have a Facebook account. I did have one that I promptly lost over three years ago. I opened it about the same time as I had a MySpace account. No use for that either. Now I am so addicted to twitter that I can't go without my Droid. Never mind that I have four Twitter Apps for it now, only one that I use on a regular basis. It was okay for me to use Twitter because it was only short 140 character messages. No harm, no foul.
The Beatles-:"Baby's in Black"
Now I have someone crying "Foul" and I need to know what to do with it. I can admit she's right, I have been a little compulsive lately. That is true, and so I'm not lying. She'll probably be glad to know I'm listening to her and acknowledged her opinion instead of barking down at her lately. With the high level of stress in our house, I don't need to contribute by adding more fuel to the fire. The home life is finally calmed down after the storm that was October and now we've in the anticipation of the Holidays. Take it easy Paul, and keep the household calm. We don't need to start any storms here.
Flock of Seagulls-"Space Age Love Song"
Its really nice that things are going more smoothly. I must admit I don't know what to do with it though. I'm used to dealing with ten little storms a day. I feel like I did when I first started this blog and that is living day by day in a calm manner. Its nice to be there again.
Modern English-"I Melt With You"
One last thing. We were talking about the wedding and it looks like the Botanic Gardens is the venue. Its beautiful and I'm looking forward to it. That is the key. We want a ceremony we remember as nice and calm, not something we need to look at pictures of to think "We really looked happy that day." That's crap. Its not about how we looked. Its a day for us to enjoy and have fond memories of, its not a ceremony for us to put on, like a play, to please the other people there.
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.
