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Subject: "#hospitaldays b/w a game" Previous topic | Next topic
imcvspl
Member since Mar 07th 2005
42073 posts
Wed Aug-06-14 08:48 AM

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"#hospitaldays b/w a game"


  

          

So for the past four months I've been caring for my son who's been getting regular out patient care while waiting for a diagnosis and treatment path for what he's been dealing with. Some of you might remember last year he was included in the Discovery Museum's lego exhibit (his built when he was 5 is the first in this series - http://www.timeout.com/new-york-kids/things-to-do/check-out-kids-lego-works-at-the-art-of-the-brick-slide-show).

So we've been going into the hospital sometimes three times a week to get maintenance treatment while they figure out what's going on. Its crazy because over the course of the four months I've met at least a hundred kids and their parents just from the local tristate area who've been dealing with blood disorders and cancer. There's some suffering right under our noses that we don't even recognize until we're in the midst of it. At the end of the day I'm thankful because what my son's prognosis could have been a lot worse. I've met folk dealing with a lot worse. But it's still hard as shit.

So anyway they finally figured out how they want to treat him and I'm headed into the hospital now for another round of inpatient, sleeping in lounge chairs and eating coffee for breakfast lunch and dinner.

On the brighter side though one of the projects we were working on over the summer, which was to create a game for Marbles the Brain Store's pattern game challenge, was selected as a finalist. While I helped in the execution, the direction of the project was driven by my two older kids. I'd love to win this for them and so if yall wouldn't mind going to the facebook page https://www.facebook.com/media/set/?set=a.10152616131952372.1073741842.25943667371&type=1 and after you've had a look at all the games, click on the image for Ciphexr and throw it a like. Also feel free to leave a comment.

The winner is set to be announced on National Geographic's Brain Games (another favorite show of my kids) on August 25th. If all goes well my son should be home by then.

Thanks.

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Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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Topic Outline
Subject Author Message Date ID
a modern problem with historical and societal implication
Aug 06th 2014
1
I'm listening :-)
Aug 06th 2014
2
On a related note, Black women disproportionately die from cancer
Aug 07th 2014
4
      FAM!! This quote right here
Aug 07th 2014
7
damn. peace to you and yours, fam.
Aug 06th 2014
3
depression is ravaging these parents
Aug 07th 2014
5
on protocols
Aug 07th 2014
6
Powerful n/m
Aug 07th 2014
8
What I wouldn't give to be able to control the air conditioning n/m
Aug 07th 2014
9
awesome. i noticed you have a hook bracelet on in the film...
Aug 07th 2014
10
it's my wedding ring
Aug 07th 2014
11
      how sweet! mine never comes off! i love that tradition.
Aug 07th 2014
12
nutrition
Aug 08th 2014
13
yup
Aug 10th 2014
18
on how i gave up hoping
Aug 09th 2014
14
Two years, ten months and five days
Aug 09th 2014
15
yes. it's a long road
Aug 10th 2014
19
I had a day off from the hospital
Aug 10th 2014
16
damn bruh. crazy
Aug 10th 2014
20
Brought my son home today
Aug 10th 2014
17
fucking steroids
Sep 02nd 2014
21
all my hesitance to drug treatment shit coming back
Jan 12th 2015
22

imcvspl
Member since Mar 07th 2005
42073 posts
Wed Aug-06-14 10:34 PM

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1. "a modern problem with historical and societal implication"
In response to Reply # 0


  

          

There's a lot of 'we don't know' in the world of pediatric oncology. It can be frustrating as fuck as a parent. At some point (for me at least though I imagine many others) you realize that the majority of what is being done is just 'well lets try this out,' and your child is the guinea pig.

But then there's the social aspect of it all which puts a whole other slant on it. Like fa real, I've met 100 kids and at minimum 75 of them were kids of color. Almost 100% of them were working class and under. If you made a map of the cases I can almost guarantee that it would say something socially that no one wants to admit to.

I ask so what caused this to come about, what was the trigger? And I ask this because they always say there was something which triggered it (in fact it's a necessity to follow their lines of treatment/experimentation). They then come back with a list of things as long as the side effects for the drugs they want you to try, meant to say 'it could be anything.' In fact it's probably a core set of things they'll never mention by themselves, instead grouping it with a bunch of other less likely candidates so that hey all seem less likely.

I'm an educated black man. They aren't used to speaking with folk like me or my wife. Like I said we've spoken to other parents. Immigrant parents have the hardest time, because by all accounts they are supposed to be in a better healthcare system, but the communication lines are so problematic. It's like how do you translate Dr. double talk to plain english and then translate it into their native language with google. I've heard folk just going off on some miscommunication shit.

My wife's been really good about trying to educate folk. Because they don't know. They don't know that the doctors don't know. And so when a year and a half down the line they are still dealing with the same shit and worse they think the doctor is el diablo for lying, when in fact it was just cultural miscommunications combined with standard Dr. double talk.

And this is the norm. Like this is the population (from my experience) dealing with this, and so this is it. And it reeks of so many of the societal woes that go back decades at least. And its us that pay the price.

Kids with cancers. I've been asking myself if it really is a new phenomena or if it's just things that happened in the past that didn't have a name. I still don't know for sure. Like perhaps there was cancer centuries ago as well, but even if that were true it wouldn't absolve this modern society of the guilt it should feel for creating this monster that now attacks our children before they even have a chance at life.

*sigh* #hospitaldays after hours.... lots of time for thinking, which can be a good and a bad thing.

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Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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Trinity444
Charter member
40167 posts
Wed Aug-06-14 11:20 PM

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2. "I'm listening :-) "
In response to Reply # 1


  

          

language is so important...

  

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Goldmind
Member since Oct 28th 2004
27522 posts
Thu Aug-07-14 12:15 AM

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4. "On a related note, Black women disproportionately die from cancer"
In response to Reply # 1


          

http://mobile.nytimes.com/2014/03/14/opinion/why-black-women-die-of-cancer.html?referrer=&_r=0

Cancer is a disease that's about not just our bodies but also our humanity. I wonder if anyone has taken a closer look at its occurrence among children of color.

Peace to your family. I hope your son gets well soon.

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Thu Aug-07-14 11:16 AM

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7. "FAM!! This quote right here"
In response to Reply # 4


  

          

"According to the C.D.C., even when they have similar insurance coverage, 20 percent of black women with an abnormal mammogram wait more than 60 days for a diagnosis, compared with 12 percent of white women. And 31 percent of black women wait 30 days to begin treatment, compared with 18 percent of white women.

The Institute of Medicine reported in 2003 that black Americans with health insurance similar to that of white Americans are, at times, less likely to be recommended by physicians to receive curative cancer care. I don’t think this is because doctors are racist, but rather that they make assumptions about race that can be harmful. For example, a specialist treating a poor black woman may doubt that she will comply with a complex treatment and recommend a simpler, but noncurative, therapy instead."

You don't know how hard we had to fight to get to where we are. I might go into it a little later but fa real this is exactly the shit I'm talking about and have experienced.

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Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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KiloMcG
Member since Jan 01st 2008
27233 posts
Wed Aug-06-14 11:29 PM

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3. "damn. peace to you and yours, fam."
In response to Reply # 0


  

          

if i was on fb i'd participate in that.

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Thu Aug-07-14 09:40 AM

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5. "depression is ravaging these parents"
In response to Reply # 0
Thu Aug-07-14 09:42 AM by imcvspl

  

          

There was one mom who had to be hospitalized for it. After a while she just stopped being able to cope.

I see it in the faces of so many others. Goes back to the point about communication not being the clearest. They blame themselves and feel so helpless in doing anything about it. And if what they are doing takes a turn for the worse they may outwardly blame the doctors and such, but internally it all goes back on them.

Then there are those who feel burdened and blame the child. Those are the hardest. It is of course a deflection for their own guilt but it can really be harsh. The why'd you have to get sick, or why do I have to put so much effort into this for you.

There is 'support' available in the hospital but again this from people who don't look like the parents, don't talk like the parents and ultimately can't really relate to what the parents are going through. So the parents don't go to them. One of the counselors was so happy that me and my wife were asking questions and being proactive in the care, primarily because it just doesn't happen. She of course would offer but the receptivity isn't there because ultimately the trust isn't there.

Again the issues with this go far beyond just what's on the surface but into the very threads of the fabric that make up our social order. Such complex shit, that nobody really addresses head on. I don't know, my wife does as much as she can to help folk understand, but we've got to deal as well.


█▆▇▅▇█▇▆▄▁▃
Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Thu Aug-07-14 11:10 AM

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6. "on protocols"
In response to Reply # 0


  

          

I should probably make it clear that at this point my son is not considered to have cancer. What he's presented with has a high risk of turning into cancer but at this stage it is not. It's a variation of an early detection stage, so that if all goes well he may never get cancer.

What I've learned from this is that there's a whole lot of money in cancer, but not so much when it comes to things like this. this is both with treatments and with research. so on the research in all the effort is being put into 'curing' cancer, substantially less into what actually causes the cancer. so by example the whole genome mapping. they'll wait until you are a full blown cancer patient in a near terminal state before investing in doing a complete genome work up (because of the cost is the rationale) as sort of a last resort. meanwhile there are tons of patients presenting conditions which could lead to cancer but they don't atually map those to figure out what could be leading to the cancer.

on the treatment side of things almost all of the support networks revolve around cancer. i can't tell you how many times I've heard 'well if he had cancer' followed by why i should be thankful it's not cancer. of course i am thankful for that but it doesn't exactly help to know that there's little you can do to help until he actually has it.

i'm probably going to keep saying this but i'm thankful for our situation because it could be so much worse. the things that i find difficult to grasp however just serve as indications as to exactly how hard some others have it.

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Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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DaHeathenOne76
Member since May 11th 2003
29354 posts
Thu Aug-07-14 11:56 AM

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8. "Powerful n/m"
In response to Reply # 0


          

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Thu Aug-07-14 01:52 PM

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9. "What I wouldn't give to be able to control the air conditioning n/m"
In response to Reply # 0


  

          


█▆▇▅▇█▇▆▄▁▃
Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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earthseed
Member since Feb 26th 2004
26980 posts
Thu Aug-07-14 02:02 PM

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10. "awesome. i noticed you have a hook bracelet on in the film..."
In response to Reply # 0


  

          

you've been to one of the virgin islands?
i had to rewind a couple times to make sure i was seeing correctly!

now go runtelldat, ho.

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Thu Aug-07-14 02:09 PM

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11. "it's my wedding ring"
In response to Reply # 10


  

          

given to me by my grand mother. worn for years before meeting my wife who turned it around.

█▆▇▅▇█▇▆▄▁▃
Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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earthseed
Member since Feb 26th 2004
26980 posts
Thu Aug-07-14 02:23 PM

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12. "how sweet! mine never comes off! i love that tradition."
In response to Reply # 11


  

          

now go runtelldat, ho.

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Fri Aug-08-14 08:18 AM

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13. "nutrition"
In response to Reply # 0
Fri Aug-08-14 08:28 AM by imcvspl

  

          

It bugs me out how little attention is paid to the nutrition aspect of health in the hospitals. Simplest example, why don't hospitals have all natural fruit juices? Like seriously why are they giving out jello and sugar water juices? Why is pizza on the menu as a meal?

The thing is that its one of those environments where good nutritional habits could be taught to kids in ways that they could take home with them, but instead all you get is kids going home wanting to eat jello every day.

*goes to get another cup of coffee* LOL!!

█▆▇▅▇█▇▆▄▁▃
Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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astralblak
Member since Apr 05th 2007
20029 posts
Sun Aug-10-14 07:51 PM

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18. "yup"
In response to Reply # 13


  

          

.

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Sat Aug-09-14 09:00 AM

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14. "on how i gave up hoping"
In response to Reply # 0


  

          

to be clear hoping not hope. I still hope for the best path to get us to the other side and know there will be another side of this. But I had to give up hoping in the interim.

The type of person I am I plan for eventualities in my head. Like constantly I'm assessing what is happening at any moment and evaluating the possibilities that can spring from that point, so that by the time I get to an hour from now I'm in a sense prepared for most eventualities. It's a bit neurotic sure, but this isn't about that.

Right after rushing my son to the hospital while he's bleeding profusely and watching the most painful thing I've ever had to witness done to my child, my spirit was broke. In my processing of what was going on for about a month at that point I was full of optimism, like the next test is going to reveal that xyz is working or abc is going back into remission. This was partly fueled by doctor enthusiasm as they were 'certain' they had a diagnosis at that point and so said treatments were going to help. They of course ended up having to diagnose three or four more times and nothing was exactly as they supposed.

So I stopped hoping. I started accepting that within this there is no tomorrow, or next week or net year. There's just right here and right now and *knowing* what can be done in this moment to keep a smile on his face.

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Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Sat Aug-09-14 09:04 AM

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15. "Two years, ten months and five days"
In response to Reply # 0


  

          

We went to this gathering of kids with their families and this one dad comes to me all chipper. He's like so what's your prognosis looking like. So I'm like we're still trying to diagnose. And he gives me the taken aback 'ohhhhhhh' like you're jus t getting started, I am so sorry to hear that. The look shook me.

When I'm able to get words together I'm like so what was your prognosis. He says forgive me for putting it like this because its just the way I've come to understand it but two years, ten months and five days.

That shit hit me like a ton of bricks. But that was a final number so to speak. They were on the other side. You could see the joy in all of their eyes. It wasn't over over but they were getting their normal back. He whispers to me though, 'she's not exactly the same. like it's different, but giving it some time and she'll be a normal kid again.'

█▆▇▅▇█▇▆▄▁▃
Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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astralblak
Member since Apr 05th 2007
20029 posts
Sun Aug-10-14 08:00 PM

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19. "yes. it's a long road"
In response to Reply # 15


  

          

My father who died of multiple myeloma cancer in 2005, fought for near 3 years, but it took almost 3 years and 5 doctors to find the cancer to begin with.

His high blood pressure and diabetes, which ran in his family (Black men born in St. Louis grew up and living in Detroit, Chi, and Gary, Indiana), was making it difficult for them to diagnose in the beginning. As his condition worsened they struggled to find answers.
Then about two years in, when he could no longer be considered a worker for his company (missed too many accrued days) and he lost his insurance, shit became a fucn maze to figure out

anyway, thank you for sharing your journey thus far. may you always find power and strength in your weakest moments

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Sun Aug-10-14 07:39 PM

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16. "I had a day off from the hospital"
In response to Reply # 0


  

          

So I take my two daughters to the park for a summer concert. We're chilling by this tree when these other kids start climbing it. All of a sudden this boy starts screaming about getting bit by a bee. He's hysterical and can't figure out how to get down. Father instincts kick in and I run over to help him. BUt he's just swinging and kicking wildly aggrivating the bees, one of which swoops down and bites me on the hand.

I'm allergic.

Thankfully there were folk at the event that were able to help me out without needing to go to the hospital... until the next morning at least.

crazy shit.

█▆▇▅▇█▇▆▄▁▃
Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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astralblak
Member since Apr 05th 2007
20029 posts
Sun Aug-10-14 08:02 PM

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20. "damn bruh. crazy"
In response to Reply # 16


  

          

.

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Sun Aug-10-14 07:41 PM

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17. "Brought my son home today"
In response to Reply # 0


  

          

So far everything is good. Got like six months of outpatient monitoring ahead before anything could be said to be on the other side. Then another year or so after that before "normalcy" but thankful to have made it through this step with my family in such good spirits.

█▆▇▅▇█▇▆▄▁▃
Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." © Miles

"When the music stops he falls back in the abyss."

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Tue Sep-02-14 11:04 AM

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21. "fucking steroids"
In response to Reply # 0


  

          

he's been off em for about a week now. but man alive when he was on em. he was waking up and eating a dozen eggs for breakfast. no exaggeration. and now, *sigh* i just noticed he's growing a moustache... at seven folks, at seven.

β–ˆβ–†β–‡β–…β–‡β–ˆβ–‡β–†β–„β–β–ƒ
Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." οΏ½ Miles

"When the music stops he falls back in the abyss."

  

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imcvspl
Member since Mar 07th 2005
42073 posts
Mon Jan-12-15 12:22 AM

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22. "all my hesitance to drug treatment shit coming back"
In response to Reply # 21


  

          

i mean the hardest decision about all of this is (i may have said this above) it's not the type of shit i'd choose for myself. i'm not completely anti-drug mind you but i'm pretty cautious, and basically all that caution had to be thrown out the window as i put my son in these doctors hands.

of course they tell you about the primary drug. that shit was a doozy and i prepared myself for it as best i could but i don't think i really wa prepared for the fact he's gonna be on drugs for a while.

the steroids not just got him body hair but his voice is changing and shit. he's moody as fuck. a bunch of aggression. again remember he's seven. and as much as i can tell myself well thats a part of the effect of the drugs, another side of it is recognizing that this is shaping who he is emotionally and physically.

he;s on a shit ton of preventative anti biotics. i can't stand antibiotics. the idea of preventative anti-biotics is just dumb to my holistic perspective. but he can't get sick so they load him up for the anti-biotics of everything they can fucking think of.

and i gotta dose his ass. everyday three times a day i gotta serv him up his little drug coctails. shit be kiling me.

all of that said, he's recovering at a pace faster than the doctors epected and he's still my son, and i'm so happy to be having so many moments of joy and laugher with him right now. you don't even know.

β–ˆβ–†β–‡β–…β–‡β–ˆβ–‡β–†β–„β–β–ƒ
Big PEMFin H & z's
"I ain't no entertainer, and ain't trying to be one. I am 1 thing, a musician." οΏ½ Miles

"When the music stops he falls back in the abyss."

  

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