Wednesday, May 18, 2011

This sort of thing isn't supposed to happen to angels

As I have proceeded through 17 years of having CFS, I have encountered more and more individuals who also suffer from this terrible disease. I have had conversations with people who struggle to have the will to keep going even one more day, seen videos of people who cannot roll over in bed or even speak, people who have not left their homes for decades or have had to move from one home to another year after year because of financial dilemmas that have resulted from this disabling illness. Chronic Fatigue Syndrome is among the cruelest of diseases. There are no words to capture how it takes that moment where the train goes off the tracks, crashing into the earth in flames and makes that moment every moment of your life.

All of this is terrifying to an undefinable degree, but what is most amazing to an equally undefinable degree, is that these same people are consistently the kindest, most generous, caring people I have ever encountered. I see people reach out to others they have never even met with the care and love of a parent or a partner. I see a connection and sense of community, where we are all acknowledging one another's brilliant and bright existence, outside and in spite of this illness. I don't know if CFS simply strikes the bright and the kind, or if the experience makes us so. Regardless, I wanted to share this with all of you who have CFS, and also those of you who don't and may not have the privilege of bearing witness to this community of humanitarians.

A final thought. It strikes me in my heart whenever I hear of another person with CFS that this sort of thing isn't supposed to happen to angels.
But it does.
Millions of them.
And as an angel would, these people gracefully spread their wings and continue to fly about the earth doing what angels do.


  1. They say "if the shoe fits, wear it," and I sure do see angel shoes on you! You are definitely being a light.

    And indeed, it's so true. The whole community of neuro-immune sufferers is aglow with the angel-light and sharing it around. It's a beautiful and humbling thing.

  2. I hope to never be challenged with a long-term illness, especially one as debilitating as CFS, but if I ever am, I hope I find such a welcoming community.

  3. “We are all angels with only one wing, only when we come together can we fly.”

    - Luciano de Crescenzo

    This quote always makes me think of 'us'. And i agree with all my heart, the friends i have made with this illness are beyond a doubt some of the most compassionate, thoughtful and intelligent people i have ever met. I'm waiting for the day when we all get to unleash those gifts on the world again en masse...can't wait to see it.

  4. After getting to know so many with CFS I find that it happens to some of the best, warm-hearted, intelligent people. It's a shame.

  5. Beautifully written and so obviously heartfelt...the world is just a better place with you as a brilliant light...

  6. Well said. I wish outsiders could see our community like this - like I know it. Without my friends on Internet, I would never have found a knowledgeable doctor, let alone testing and treatment. And who would have sent me jokes to cheer me up when I was down in the dumps?

    The level of deception it takes to pretend we're not there can't last forever. There will be answers, there will be treatment. In the meantime, it is people like you that helps us get through to another day. Thank you.

  7. Lovely post, me/cfs is something you wouldn't wish upon anyone and it breaks my heart a little every time I read another post os someone else struggling day by day with me/cfs. I'd prefer to be alone with this than have so many people suffer as well, but since that's not a choice, I must admit that I love how strong and caring the online me/cfs community is to each other.

  8. Illnesses do not discriminate. Nor suffering or early death. It usually happens to the best of us.
    It's a hard blow and a big challenge to remain yourself - your before the illness self.

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