Open Thread - Friday, December 15, 2017

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The sorrow we feel when we lose a loved one is the price we pay to have had them in our lives.
― Rob Liano

For awhile, I thought I had mostly completed the grieving process. Sue died from ALS, January 31, and I set about staying active and moving on. Things went pretty well through my September motorcycle trip, but upon my return hit the wall. Tired and lonely, I slogged through Sue's birthday, our wedding anniversary, Thanksgiving and Thing1's birthday. Now, Christmas is on the horizon. I have an inner hollowness and despair, that manifests itself as anger, and have been withdrawing from social groups. Sometimes, I find solace in music. Sometimes it induces melancholy. There are songs that immediately remind me of my lost love.

Sue was beautiful, in every way. A statuesque ginger school social worker.

She was a tireless advocate for children, intelligent, determined and tenacious. It was a thing of beauty when she would box in school administrators using Leandro. She forced the school district to provide transportation for all students. Including undocumented, homeless and transitory students.

Sue made a difference. When Ady Barkan, confronted Jeff Flake, a flood of emotion overcame me.

'You Can Save My Life': Traveling on Same Plane, Man With ALS Confronts Sen. Flake Over GOP Tax Bill

Sen. Jeff Flake (R-Ariz.) boarded a plane leaving Washington, D.C. on Thursday, less than a week after voting for a tax bill that could result in devastating cuts to disability programs.
Ady Barkan, a 33-year-old father living with amyotrophic lateral sclerosis (ALS), boarded the same flight after spending several days protesting the very legislation Flake helped ram through the Senate.
Barkan, who could be one of the millions of Americans severely harmed by the bill, wanted an explanation.

Approaching Flake on the Thursday night flight to Arizona, Barkan demanded to know how the senator who in October condemned President Donald Trump for his "flagrant disregard of truth and decency" could proceed, just weeks later, to vote for a bill that may trigger life-threatening cuts to programs that children, the elderly, and the disabled depend upon for survival.
"Mick Mulvaney of the Office of Management and Budget is individually responsible for choosing and implementing those cuts," Barkan told Flake. "He thinks people on disability are just slackers, so what happens? What should I tell my son or what should you tell my son if you pass this bill and he cuts funding for disability and I can't get a ventilator?"

ALS, Barkan explained to Flake, "has a life expectancy of three to four years, no treatment, no cure." As the condition progresses, Barkan's medical bills will soar, and he will continue to need additional assistance to stay alive. The GOP tax plan could deprive him of these necessities.

Having a BIPAP is a primary comfort giving device for ALS patients. As neuromuscular function diminishes, ALS patients breathing gets progressively shallower causing hypoxia. Insurers, including Medicare, will classify a BIPAP as life extending, rather than comfort giving, and deny the use of ventilation during hospice. Most ALS patient spend anywhere from months to years in home hospice making a BIPAP essential.

Well, that shakes the soul.

That too! It takes me back to that day in New Orleans when we held each other and swayed to Reverend Al. I wish I could hold her again.

It's enough to give a soul funk.

The thread is OPEN.

Have a funky great weekend!

Soul long for now.

Goodbye.

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Raggedy Ann's picture

How to begin? Oh, gentle soul, your grieving must complete a calendar year before the real healing can continue. All traditions you had during this season will be magnified with your loss. You must live through it and allow the pain to move through you to get to the other side. Getting through her death date will be the last milestone. Each year you will find your pain eased but never gone. My Tom has been gone for 30 years, I'm remarried for 22 years and I can still fall apart for odd reasons that remind me of him and I always acknowledge his birth and death date. It's impossible not to. Find comfort in and with your Things.

Five more working days until I'm off for two weeks. Yippee!

Have a beautiful day and weekend, everyone! Pleasantry

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"They'll say we're disturbing the peace, but there is no peace. What really bothers them is that we are disturbing the war." Howard Zinn

NCTim's picture

@Raggedy Ann We were soul mates, together for 39 years. I literally ache to hold her in my arms.

Traditions, not so much. My younger sister took it upon herself to keep an eye on me. She booked an Air BNB, in Denver, and our families are meeting there. No gift exchange, just eat drink, smoke and be merry. Thing1 and my sister's youngest both partake and are excited about the prospects. Thing2 does not partake, but came to me about some mentoring on edibles. Smile My sister's middle child's birthday is 12/29 and I hit six-O 12/31, so we even have excuses to party.

Most everyone is going skiing, 12/26. Leaving Thing1 and BIL for me to entertain. My BIL has never been further north than NC, west of Nashville or above 6500'. I am thinking of taking them to Leadville for the day.




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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

QMS's picture

@NCTim Leadville is a great old mining town. Snowpack instead of salt on the roads. Clean. Good luck friend.

PEACE

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Intelligence is being redefined as the ability to repeat ever more complex instructions.

NCTim's picture

@QMS

Situated at an elevation of 10,152 feet (3,094 m), Leadville is the highest incorporated city and the second highest incorporated municipality in the United States.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

Raggedy Ann's picture

@NCTim

like mama. Beautiful women! Righteous songs - they really spell out the emotion. How do I get there is so true - it's a tough journey with may peaks and valleys. You were so fortunate to have had a soulmate like Sue. Your quote above says it all.

Leadville is a fun small town - you'll enjoy it! So happy you are going somewhere else for the holiday and will be with your family who loves you to the core. My son will be 45 on Dec. 30, so cheers to you and him! Drinks

We don't exchange gifts either. My grandkids are just happy I help them throughout the year and my kids are set in their lives and I don't need shit right now. I call it consumermas anyway - the holiday has become so obscene in the consumer category. My daughter and her husband will be traveling home to be with us, thus the grand kids will be over, too (although we see them often since parents live out of state now). My son and his wife will head to Phoenix to be with her family. Much warmer there. I'm leaving for San Diego on the 26th to be with my brother for a few days and he's coming back with me, so we'll have some good time together. I won't go back to work until January 4th, so a nice break is in store.

All you can do is your best, Tim. Put one foot in front of the other and keep moving forward. Know you are loved by your c99p family, too.

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"They'll say we're disturbing the peace, but there is no peace. What really bothers them is that we are disturbing the war." Howard Zinn

riverlover's picture

@Raggedy Ann per day. Makes me happy. Have a great time.

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.

Raggedy Ann's picture

@riverlover

I don't like the winter darkness...

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"They'll say we're disturbing the peace, but there is no peace. What really bothers them is that we are disturbing the war." Howard Zinn

thanatokephaloides's picture

@NCTim

Situated at an elevation of 10,152 feet (3,094 m), Leadville is the highest incorporated city and the second highest incorporated municipality in the United States.

IIRC, it's the highest county seat, too!

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"I say enough! If Israel wants to be the only superpower in the Middle East then they can put their own asses on the line and do it themselves. I want to continue to eat."
-- snoopydawg

NCTim's picture

@Raggedy Ann The Charles Bradley song turns on the water. The Don Bryant song is righteous. DB wrote "I can't stand the rain" for his wife, Ann Peebles. The GCS version adds a bit of funk.

That's my baby girl, sunglasses and holding sign.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

@NCTim

I heard it here.

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NCTim's picture

@irishking Sue and I watched The Commitments every Saint Patrick's day.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

@NCTim

all the best.

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riverlover's picture

Even at Year 7+ I feel unmoored. Not around the holidays, just every.day. I get a Christmas visitation from daughter and her husband. Maybe she works Christmas Day this year; that has yet to come up in twice a week conversations. A Look can go between many who have lived through the death of an SO. Pain is released that way. And sympathy.

Be glad you are in NC (if you are). In Ithaca, currently 12F. 2" of snow on the ground. Although I have a perfectly functional refrigerator in-house, the car works as a seasonal freezer. I wish my walking abilities were better...I have lost confidence.

On-topic, does CBD work with anxiety and sleeplessnesss? Is so, when? Panic attacks continue randomly. Sleeplessness is constant. Music gives me no comfort. Peace on, Tim.

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.

NCTim's picture

@riverlover Sleeplessness - I don't know, nor sleep. My son was using CBD vape pens, legal everywhere, for anxiety.

During Sue's treatment for ALS, the neurologist had flatly stated that cannabis helps some people. I mentioned it on here and alphapop (sp) responded about a law enforcement group that advocates for legalization and lady he knew who treated ALS with cannabis, and had far out lived expectations. I mentioned the central Florida lady to the neurologist and he said, "Yes, I have her case file, her ALS progression has slowed, and she has a very good quality of life, for an ALS patient."

The mobility issues give me anxiety and lend a sense of mortality. I only have aches and pains, and possibly hips that will be problematic. So, I am in a rush to live life to the fullest. I considered selling my house and moving to a more rural locale, but I have always been a big picture thinker and know that would only last a few years.

Keep warm. A little spiced rum in cider sounds good.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

riverlover's picture

@NCTim is my current concoction. Frozen eggnog in the car to be retrieved and thawed. I have MD orders to consume calories now, weight loss as a result is surprising.

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.

NCTim's picture

@riverlover One mile, each way, evening walk.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

riverlover's picture

@NCTim Although Stout may be filling. I should do a beer and ale revisit.

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.

NCTim's picture

@riverlover

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

and Love to you, Bruddah Tim!
My mom called with the news that my Pops is close to the end. 83 years young, less than 80lbs, can’t eat, needs help with everything.
If he lasts long enough, I’ll roll down to spend Consumermas with them.
We’ll see.
Be well and Be Loved, Bruddah.

Stop These Funkin’ Wars!

peace

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Ya got to be a Spirit, cain't be no Ghost. . .

NCTim's picture

@Tall Bald and Ugly He could be holding out. Sue was the only one of her siblings to have a family. Her Grandmother, my kids great grandmother, was in similar shape. She was in Pittsburgh, and we were in NC, but coming for Christmas. We got in, visited her, while comatose, then she died over night. If you get a chance follow the link back to the Open Thread right after Sue died. A similar dying amazing thing happened.

While I was composing this, the Gram Parsons above transitioned to:

Serendipity

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

riverlover's picture

@NCTim Senior year in college. Gram was a gift.

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.

Lookout's picture

The Denver trip sounds like a great outing. I bet CO is experiencing a great deal of tourism dollars. One city made a couple of million last year off pot tax alone.

CO pot taxes.png

It's good that you're gathering with family for holiday fun and release. I'm glad you had a great love with Sue. Many never know the joy and support of a long term partner. The pain of loss is part of the price of your treasured time together. I wish you ease and comfort in this phase of your life. All the best!

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“Until justice rolls down like water and righteousness like a mighty stream.”

NCTim's picture

@Lookout I know Sue and I had a special relationship. During my fall motorcycle ride to Colorado, I stopped in a dispensary, near the base of Pike's Peak, it was a Sunday afternoon and the place was buzzing. I am guessing, but it sure seemed like they were turning over $1000/minute. There were ~10 cashiers and the upper end of transactions is $400-$500 (limited to ounce of loose bud, exotic/high potency bud north of $400/oz).

They do their picking a little different than yinz y'all.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

Mark from Queens's picture

Listening to the Charles Bradley version now. Black Sabbath are an all-time favorite band. My entire adolescence was filled primarily with their magnificent, powerful, dark blues-based heavy metal, the perfect companion for a burgeoning, contrarian, rebel. But they had these really moving ballads here and there, like that one. Amazing soul version. Think he might also have done a Neil Young tune, which I found out by stopping in my tracks in a club one night and marching over to the dj to ask (can't remember if it was Don't Let It Bring You Down).

Music, especially when I was a sexually charged but emotionally confused teenager, was the total vocabulary for my relationships for a long-time. Was better expressing intimacy through a mixed tape or suggesting an album. Remember playing this Black Sabbath song over the phone as a 16 yr old to my girlfriend as we were starting to break up (wouldn't suggest it if you're not ready). I also remember getting to a point when music couldn't do it for me, in the middle of a long, drawn out separation. Looked at my 2000+ cd collection and fancied none of it, which was very strange for me. It eventually comes back, but in the throes of it sometimes you're just too unreachable.

Just found at my local library a book that is the entire 5 day conversation between the author-interviewer and David Foster Wallace. In it (re: loneliness) Wallace says books make us feel a lot less lonely. I agree. For all intents and purposes my giant music collection is amazingly almost all on my Ipod (120 gigs, 23k songs) with only a small stash of cd's not packed away in the basement, to make room for the kids. The bookshelves, however, are packed and overflowing (still have all the vinyl in the living room, though Good ).

Thanks for linking that story of the guy with ALS confronting his Senator on an airplane. Need lots more of that. Literally get in their faces. The BIRAP is humane. Have had asthma and just recently got something called Expiratory Stridor from the acid reflux/GERD I have. Scary shit when it manifests, which triggered one night a month ago when I both overate on the homemade pizza and drank a ton of red wine with it and didn't drink much water. All are triggers. My throat literally began constricting, but I thought I was having a serious asthma attack. The shallow breaths were frightening, felt like I couldn't get air in. These fuckers, in their hermetically-sealed worlds of cocktail parties and lobbyists, are content to be willfully ignorant in order to do the bidding of their donors.

Enjoy the mountains and clouds in Colorado. Sounds amazing. Would love to do a little skiing at some point. But life is boiled down to its most elementary right now and it can be draining, sucking out the energy to do anything physical (aside from working behind the kit).

And, Happy (Big) Bday if I don't see you by then! Me and the Boy just had ours last week. Used to play this one at the teenage basement parties we used to do in high school.

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(thirty three and a third at TOP)

"If I should ever die, God forbid, let this be my epitaph:

THE ONLY PROOF HE NEEDED
FOR THE EXISTENCE OF GOD
WAS MUSIC"

- Kurt Vonnegut

Lookout's picture

@Mark from Queens

"Hey McCloud get off of my ewe"

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“Until justice rolls down like water and righteousness like a mighty stream.”

NCTim's picture

@Lookout Awesome Christmas party Sunday night!

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

enhydra lutris's picture

@Lookout

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That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --

NCTim's picture

@Lookout

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

NCTim's picture

@Mark from Queens 33.333333333333333333...

Once upon a time, I was a Black Sabbath, Led Zeppelin, Deep Purple, .... youth of the 70's. I saw Van Halen open for Back Sabbath, right after the first VH album. Black Sabbath blew their doors off. Track count is currently @ 28,318 and will not fit on a classic, so I have a six sigma sort on track rating, number of plays and last time played.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

enhydra lutris's picture

buddha2

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That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --

NCTim's picture

@enhydra lutris From a secular humanist.

Bay Area percussionist:

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

enhydra lutris's picture

@NCTim
secular humanist. Thanks for the video too. It's 2 days until Saturnalia, so some measure of partying is required, if only chanting and dancing to one's own (inner) drum.

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That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --

QMS's picture

@enhydra lutris Begins at the new moon on Monday aka the darkest depths in the Coligny calendar. Ray of Frost is the spell in use.

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Intelligence is being redefined as the ability to repeat ever more complex instructions.

The Aspie Corner's picture

They sure want us disabled folk dead, don't they?

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Modern education is little more than toeing the line for the capitalist pigs.

NCTim's picture

@The Aspie Corner The poor, the old, the brown, ...

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

Big Al's picture

Thanks for sharing brother.

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For Sue

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Peace out. Let's be radicals together on twitter. I'm at @Beddy63.

NCTim's picture

@WIProgressive Amazing version.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

janis b's picture

I wish for you to always find and hold beauty in your life.

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NCTim's picture

@janis b Thank you. Life has been good to me. I miss Sue, but I was able to take care of her and still take care of myself. It gave me great pleasure to take care of her, comfort her and be her advocate. Now, I have no guilt or regret. I know, I did the right thing and no one else could have done it. Our bond was such that the loss of control and our established intimacy made it OK for each of us. I am retired, before I have lost the ability to get around and with a determination to live life fully. I am already contemplating next year's beauty seeking adventure.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

joe shikspack's picture

have a great trip to colorado! sounds like a blast.

if you're ever in the neighborhood, feel free to stop by and hang out.

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NCTim's picture

@joe shikspack Leaving the house is a modus operandi.

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"The legalization of marijuana is not a dangerous experiment—the prohibition is the experiment, and it has failed dramatically, with millions of victims all around the world."- Sebastian Marincolo

orlbucfan's picture

What a great eloquent tribute to your Sweetie. Beautifully written and definitely heartfelt. You and she were very lucky to meet each other. Even factoring in the billions of humans over populating Mother Earth, true love/soul mates are not common (unfortunately). You are feeling and going through the process of grieving. What you feel is normal. You are not alone. You know that. Smile

Welp, I'm late to the party on here this week. Finished all my Xmas stuff yesterday. I now (if my aging right hand will cooperate) get to do my favorites things: writing Xmas cards and listening to tunes. Figured this one by the Blues Boy would be a good fit.

Have a great Christmas in the mountains!! Your younger sister rocks! I'm looking forward to reading all about it. Stay out of trouble, okay? Rec'd!!

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Some yahoos make me want to change species!