Friday, October 7, 2011

What to do in Honor of Amberlin Wu

It’s been a tough week in ME/CFS land. Researcher / institute divorce and allegations of researcher fraud have left many patients disillusioned. I’ve seen many of my ME/CFS peers ask, “What do we do now?” Others have said they are staying away from social media, can’t take any more bad news.

For me, the WPI / Mikovitz fall out was not shocking as the signs were on the wall, along with rumors passed in private conversations.  Allegations of fraud were surprising to me, but are far from confirmed at this point. I hope two things: that the Ian Lipkin study into XMRV survives and comes to completion and that patients who thought they had a savior do not lose hope and make decisions which cannot be reversed. 

I have always advocated that all biomedical research is worthy of support and the demands of loyalty to one researcher are harmful. Now, I hope recent developments will win more patients over to this thinking.  The researchers must compete for government funding and for public donations, but they should do so with professionalism and courtesy to their competitors. Shouldn’t patients do the same when advocating on behalf of a particular research effort? Most do. I hope more will bring courtesy and professionalism to how they treat all ME/CFS biomedical researchers and to other patients. 

Remember what the Bible says, “Do not put your trust in nobles or in the son of earthling man, to whom no salvation belongs.” Humans often fail us, sometimes through no fault of their own. People get sick, people have disputes with partners, people allow their bias or greed to corrupt their judgment / motives and…… people die.

This brings me to my motivation for this post: the sad news that ME/CFS patient Amberlin Wu died earlier this week, the one piece of news that affected me emotionally. She was far too young to die, about 39 years old according to my estimation from her high school graduation date shown on her Facebook profile. But a September 27 post on her blog, “Be a Light, CFS Awareness,” reveals she had a bump (injury) on her head recently that was causing neurological problems, and she was discouraged by yet another challenge to her disease-filled body.

I was first “introduced” to Amberlin through a YouTube video where she was interviewed with a friend concerning what it is like to live with ME/CFS. She showed some classic indications of ME/CFS that other patients will recognize: sunglasses even when in the shade and leaning her head against the wall for support. Otherwise, I was taken by her enthusiastic and fun-loving spirit coming through in spite of her energy-drained body. I was charmed by her transparent personality. I knew that if I ever met her, we would click.

That was 2007. A few years later, I “saw” her again in another YouTube video where she was filmed while trying an experimental treatment. This was a far different woman from the one I had seen earlier. Amberlin was in a hospital and described her recent relapse and showed her large rash. Yet, the spunky woman with the generous spirit allowed the world to peer into her moments of suffering as the medication gave her blow after blow as the hours passed by.  

Now, I just had to know how this woman was doing. She had captured my heart, although we had never spoken to each other directly. Earlier this year, I finally “met” Amberlin through Facebook. Of course, I asked her current physical condition. I am embarrassed to say I don’t remember the details of her answer. But I do remember the lift my spirit felt every time I saw her active on the Internet. 

Naturally, we all want to know what “caused” her early demise. We want to know so we can avoid the same fate or we can relax by determining that the chance of the same circumstances happening to us is remote. It’s human as we all do what we can to miss the darts of death as they seem to randomly hit targets all around us. 

Instead of needling for curiosity sake, I have examined what I can do in honor of Amberlin. I took the time to look at all her photos on Facebook. Not only did she have a good sense of humor in her “box” of illness; I also saw she was quite a ham. She found life and herself enjoyable even from her home after her condition got worse. I also saw she was very creative. She lost her career and could no longer dance, one of her great loves. But she still found ways to participate in life, through painting, making jewelry, raising fancy chickens and poetry. She also connected to people, including other patients. 

In honor of Amberlin, I believe all ME/CFS patients can imitate her. Can you find something enjoyable or meaningful or creative that you can do, despite your physical limitations? This will give your life meaning and leave a legacy. It fills the soul and gives you feelings of self-worth, an identity with accomplishments. 

Can you find a way to be kind to fellow patients, even if you disagree with them? How terrible if we treat our fellow patients with aggressive and / or abusive words, and then they suddenly die. Other patients are not the enemy; public apathy is. 

Can we share our humor, our joy and our love with fellow patients and family, in honor of Amberlin, the puppy in the mud who poked holes in her ME/CFS box and let her light shine through? 

6 comments:

  1. thanx so much tina. this week has really thrown many of us over an edge we already live so close to. i couldn't agree more in putting all your eggs in 1 basket - as far as ME research goes.

    mostly though, i want to thank you for capturing the amberlin i knew, as you did, via the internet. she has left a wonderful legacy for the rest of us to emulate. i shall do my personal best to follow her legacy. xo

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  2. Thanks so much for this post, Tina. You always seem to say the perfect things. I felt the same way about Amberlin and see you in that same light. I also want to support you in expecting all patients to treat each other with respect, kindness and compassion. Love to any and all who are hurting and extend my hand to hold, though you might have to hold me up in the process. But, isn't that what it's all about?

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  3. Nicely done tribute to Amberlin, Tina.

    I think Amberlin would want us to look beyond the disappointment and sorrow of late and focus on what still gives us hope.

    I started GcMAF yesterday with the help of Dr. Enlander (pls wish me luck). Dr. E is working hard with others to get the Mt. Sinai ME/CFS Research Clinic operational. Their first initiative of looking at genes of ME/CFS twins has already been announced...with much more to come. It's all very exciting!

    The ME/CFS field is more promising than ever. Sure the CDC will try to bring us down, the NIH may disappoint, collaborations will come and go, still and all, we looking at centers for excellence in NY, FL, CA. Dedicated clinicians like Peterson, Cheney and more...the CF Initiative...The Light's new $mil grant, the WPI is not dead yet and look how much attention has been brought to our cause as a direct result of their effort...and last but not least, I feel confident that Judy will land on her feet and continue with her research.

    Best wishes to my fellow patients,
    Karen

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  4. I never met Amberlin in person, but was on a an Etsy Team with her. That team is called Createability Team. It is a very special group of artists and sellers on Etsy who are disabled or are caregivers to disabled family members. Amberlin was such a joy to talk with and her artwork in many mediums is and was top-notch. Her motto, Be a light was more than mere words. She put them into action in everything she did. from advocating for her peers with CFS and the other health issues she had to finding ways to transcend her limitations just to get through the seconds of every day. She is greatly loved and loved greatly. We'll miss her.

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  5. Thank you for this tribute to Amberlin. I am glad to get to know her better through your eyes. I did not have the pleasure of knowing her... just of knowing about her through friends of hers.

    I have also wanted the same for patients with CFS. Personally, I had to leave an advocacy page because of the infighting... people acting like "the enemy" could be found in other patients. Not to mention other rude behavior that went beyond being disappointed or angry at some researchers or research. The second bit about researchers/doctors fueled, in part, I think a very real understanding that people who are not sick with ME/CFS may lack an appreciation for the experience and assume too much... Brain fart... can't really convey what I'd like to say and so while I empathize, I can't afford that sort of negativity in my life.

    Thank you for speaking out about that and honoring Amberlin. <3

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