In Memory of Amberlin Wu.

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I asked because sometimes the death is related and sometimes it actually is not. Suicide for instance, is a not unreasonable answer to horrific suffering....and I would consider the disease, then, the cause of death. Pain med overdose could be bad management by a doctor. I remember a young man, David, who was taken off his klonipin too suddenly and died of a seizure...that could have happened to someone without CFS. I don't want to pry, it's just that its relevant to know how many CFS deaths are directly due to CFS (or lyme, etc).
 

shannah

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I noticed that too Bdf.

Not sure who actually set this page up. Perhaps the dates are transposed. I sent a message off to them.
 

Daffodil

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i communicated with amberlin once via email. i cannot believe this. i used to read her blog. she was very very talented.
 

ixchelkali

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For some reason, Amberlin's death has affected me particularly strongly, though I never met her and knew her only through her blog, poetry, and YouTube videos. For the first day, I kept finding myself in tears. I think, in part, it's because she just radiated light into the world. Somehow even in sadness she managed to be uplifting. Such a beautiful human spirit.

But part of my sadness is also anger, for all the beautiful young lives affected by this horrible disease. People are dying, children are suffering, people are damnably, agonizingly ill, and yet almost no one is paying attention. People are dying after years of being ill, and it's not even attributed to ME/CFS. Even our deaths are invisible. The medical community doesn't treat it as a serious illness, our families aren't told that it's serious, and the medical schools are still telling future doctors that we're hypochondriacs. Change comes so slowly, and meanwhile a beautiful young woman like Amberlin dies, and the world is a lesser place for her loss.

I try to keep a positive outlook, and usually I succeed, but sometimes it all makes me very sad. You know?

But Amberlin's light will continue to shine in the lives of those she touched. I'm going remember her by enjoying the sunshine and laughing with friends, trying to spread a little light where I can, and never letting the sadness overwhelm me, never quit fighting for research, answers, treatment, and respect.

Thank you, Amberlin, for touching us with your smile.
 

Boule de feu

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For some reason, Amberlin's death has affected me particularly strongly, though I never met her and knew her only through her blog, poetry, and YouTube videos. For the first day, I kept finding myself in tears. I think, in part, it's because she just radiated light into the world. Somehow even in sadness she managed to be uplifting. Such a beautiful human spirit.

But part of my sadness is also anger, for all the beautiful young lives affected by this horrible disease. People are dying, children are suffering, people are damnably, agonizingly ill, and yet almost no one is paying attention. People are dying after years of being ill, and it's not even attributed to ME/CFS. Even our deaths are invisible. The medical community doesn't treat it as a serious illness, our families aren't told that it's serious, and the medical schools are still telling future doctors that we're hypochondriacs. Change comes so slowly, and meanwhile a beautiful young woman like Amberlin dies, and the world is a lesser place for her loss.

I try to keep a positive outlook, and usually I succeed, but sometimes it all makes me very sad. You know?

But Amberlin's light will continue to shine in the lives of those she touched. I'm going remember her by enjoying the sunshine and laughing with friends, trying to spread a little light where I can, and never letting the sadness overwhelm me, never quit fighting for research, answers, treatment, and respect.

Thank you, Amberlin, for touching us with your smile.
Thank you for your message. Very well said, ixchelkali.
I feel the same way.
 

justinreilly

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I asked because sometimes the death is related and sometimes it actually is not. Suicide for instance, is a not unreasonable answer to horrific suffering....and I would consider the disease, then, the cause of death. Pain med overdose could be bad management by a doctor. I remember a young man, David, who was taken off his klonipin too suddenly and died of a seizure...that could have happened to someone without CFS. I don't want to pry, it's just that its relevant to know how many CFS deaths are directly due to CFS (or lyme, etc).
Don't mean to quibble here or distract from Amberlin, but in the case of David, I don't know anything about it, but i would guess that a healthy person taken off Klonopin would not die; therefor, in my mind the root cause of death would be ME, while the withdrawal and seizure would be the proximate cause. Same thing with suicide and most other proximate causes of death.
 

Daffodil

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this world is so tragic. to go through untold suffering and then to just die. its like there is no justice to speak of at all.
 
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Yes, there is tragedy. But remember, there is joy also, even with physical limitations. Amberlin showed us that. For our own emotional health, let's focus on what we have instead of what we don't have. And let's keep fighting together to make changes on behalf of those who have died, those who will die and those who will get sick and lose so much.

Tina
 

Hope123

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I knew Amberlin and her family personally.

Thank you to the folks on this thread who want to focus on her life and what she meant to you.
I know her parents are possibly planning a public memorial at some point and would ask that people respect her and her family'sspace and privacy at the current moment.
 

Boule de feu

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I knew Amberlin and her family personally.

Thank you to the folks on this thread who want to focus on her life and what she meant to you.
I know her parents are possibly planning a public memorial at some point
Thank you for letting us know, Hope.
We will keep telling on this thread how beautiful and why she was so special for us.
 
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Re: going off klonipin suddenly, any person can die from the resulting seizure. Has nothing to do with CFS.

**********

...people need to be careful about what they say about others publicly.

Moderator: text removed due to infringement of privacy.
 

citybug

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This video is the best I've ever seen about living with ME and I never saw it before this week. These women are so lively and articulate even while so ill. This has been a terrible week but this death puts it in perspective. It is a tragedy to lose such a vibrant young person or any person. We can't get her back. It makes me want to protest, occupy something. The lack of treatment and funds is not acceptable. The newspaper article shows her disability and her blog relates the recent head injury, so it is hard to imagine circumstances that would not be related to effects of ME.

Thank you for all the links. The facebook link has links to her blogspot, etsy page, and very cute chickens. And many of her facebook photos are accessible.
Please watch this video and her Christmas video.
 

Nielk

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A more beatiful smile you cannot find
Merry, giggly - full of life
Beautiful she was in and out
Every person who knew her, loved her
Rarely do you see such a talented person
Light was she in this world
In the writings of her beautiful poetry, she remains here for eternity
No one can deny that she was a special soul

What a great loss to her family, friends and people she touched on her blog
Unity is needed now to shield the family and friends

Nielk flowers.jpg
 

Doogle

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That is wonderful Nielk! You really captured many of her attributes perfectly. I am going to pass a link of your post to our SF Bay area group.

PS Can you think of an N sentence to go after an i sentence for Amberlin?
 

Nielk

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That is wonderful Nielk! You really captured many of her attributes perfectly. I am going to pass a link of your post to our SF Bay area group.

PS Can you think of an N sentence to go after an i sentence for Amberlin?
Hi Doogle,

Thanks or pointing out the mistake in her name.
I edited it to reflect the change.
My condolences to you and your group.