People often wonder if you can die from ME/CFS. Does it count when a daily repression and shunning by society and the medical community, presses a person to their last spark of will to live? Or how about when a person lives with ME/CFS, or any of the other "Invisible Diseases" for many years, too ill to leave their houses or their beds, and then another illness compiles on top of their already immunocompromised bodies, too weak to fight off another disease? There is not enough research being done, so we cannot say that people die from Chronic Fatigue Syndrome (ME/CFS). But we can say that people die due to the repercussions and battle wounds of fighting the disease.
Today is the birthday of one of the greatest friends I will ever have. Amberlin Wu. She died, due to the battle wounds of Chronic Fatigue Syndrome. Chronic Fatigue Syndrome; the most belittling disrespectful name ever given to a horrifying life-crippling disease.
We need help. And it starts with us telling the world what is happening.
Please, let me tell you a story.
Amberlin Wu was born a strong spirited child, ready for the world ahead of her. She had passions to become a leader, a lover, a healer, a dancer. So much inside of her. She, like so many, became ill at a very young age. She was diagnosed with Chronic Fatigue Syndrome (ME/CFS). She was pushed around in the medical system, and the more that she needed help, the more battle scars she began collecting. You see, our modern medical system is full of too much ego, and not enough compassion. Amberlin’s illness was a mysterious one, and doctors brushed her off when they did not have the answers. Amberlin, like so many of us, once thought that medical doctors were there to help you through your process of illness. She believed that people became doctors because they were filled with love.
Amberlin was so compassionate that she herself even attended medical school at one point. She was too ill to continue though, so she danced. But then, she was too ill to continue dancing, so she began advocating. She fought for the rights of all people like her, with this mystery disease. But when she went to rally her medical troops, her battle field was nearly empty. ...Where were the physicians she grew up with? Where were those healthy allies she had devoted so much of her life to? She was pushed aside by many people she trusted, and thus began her collection of battle scars.
Ironically, she prepared for a war, ready to face the opposition on the other side of her; little did she know that her wounds would come from her own side of the war. The sad thing is, when we become so ill that we need our friends and neighbors to carry us, we have a hard time fighting a fight. And without the support of the medical community, Amberlin faced a losing battle, against her own team.
Still, she did not give up. She began finding little peaks of light in the corners of this dark war. She began finding other wounded fighters like her. She stretched her arms and extended her light into the souls of these other fighters. The more that she shared her brightness, the stronger they became. In turn, the other soldiers illuminated their own spirits. And a miraculous thing occurred. A light.
A beautiful light.
A seed of light grew to a garden of hope. She was connected to them all, every last beautiful bloom. Amberlin was connected. People began rising above their suffering and bringing their voices together as one harmonious chorus. “Louder. Louder. Sing your truth, louder,” the people cried.
An army arose, a beautiful brigade of invisible warriors. There were children, mothers, fathers, teachers, and yes, even some medical doctors. Together, they were strong, and Amberlin was on that very front line. “Share your stories, tell your truths!” She cried again, “Tell your truths!” The people held hands and marched forward. Amberlin, along with so many, now had a mission; a dangerous, scary, magnificent and valiant mission.
Together they were strong! And together they remain strong. ...Amberlin grew too weak to continue fighting this war for health and compassion. She, like so many others, began her completion of this circle in life. Her own personal battle was fought --and she fought so damn hard. She was a true soldier, a warrior... A hero. Amberlin, my hero, forever.
One last thing to mention about this story. Just as she approached the end of her circle of life, she reached out her hand once more. She held the weight of her life in her palms, and she told the people, “Be a light. Be your own light of strength. Tell your stories, and remember to love the ones around you. Love this life and hold tightly to each other. Always remember me, and always... be a light.”
Amberlin now has been released from her body. She is free to dance and play among the light. She rejoices in us all, we who are able to stay and fight. She wants us to continue to tell our stories, continue our fight. And she wants us to remember her. Feel her light, guiding us, and comforting us.
We will find a cure for these waring diseases, we will no longer be invisible. We just have to continue shining among the dark corners of this world. Now is not the time to give up, my friends! Now is just the time to pick up our spirits, pull together and fight this fight against invisible diseases such as ME/CFS, Fibromyalgia, Lyme Disease, Dysautonomias, Lupus and all of the other under-researched neuro-immune diseases.
Let’s go win this battle. And let us remember to give ourselves moments of laughter, dance and play along the way. Who is with me?! Are you in?!
Amberlin, I will love you forever, my old friend, my new angel. I will never give up.
And now, I leave you with a painting that I created. Every painting that I make has a story behind it. Amberlin loved this one so much. She inspired me to create art in my canvas, and art in my life. This piece now has such a different meaning to me. This one’s for you, m’dear...
She is a wise and old woman, alone in her body. She is ill and her life has been lived. When she was young, she had dreams of a life ahead, full and rich with laughter and singing. She lies now, alone and still. She drifts off into her slumber and she finds that she is young again. Young forever. ...Now, she dances.
She knows that her body is weak, but her spirit is not. She still has a life to live and a song to dance to. All of life, around her and throughout her, is a beautiful rhythm that connects all things living. She sees it, she feels it, she becomes it. She is no longer alone. She is no longer ill. She is no longer quiet, and no longer still. She is the wise, young spirit, free in her body. She has forgotten her pain, and found her rhythm once again. She knows that her suffering has led her into a life of strength, bravery, love and music forever. ...Now, she dances.
This painting is about hope. Even when we are tired and we are ill, there is always a spirit among our hurting bodies. Suffering brings wisdom, and patience brings strength. When you are scared and lonely, remember that in spirit, there is always a living rhythm that sings of hope. When we listen for the music among the quiet suffering, finally... the spirit dances.
Dr Franky Dolan
Amberlin Wu: June 27, 1972... to Oct. 4, 2011... to forever ~
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