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.
