Monday, May 10, 2010

“65 Roses,” “Cystic Fibroris,” And Other Tongue Twisters

May is Lupus awareness month. And today is World Lupus Day. I cited an article in my last post, Time Is A Luxury We Don’t Have, about young people blogging about death. I did some research on the main person that the article was written about, and I learned a lot.

So it goes that when children who have cystic fibrosis are young, they can’t quite say “cystic fibrosis”, so they end up saying “65 roses”.

But I have to wonder. Haven’t we all had these moments? Moments where we didn’t understand, couldn’t comprehend our illnesses? That we can’t believe how f***ed up the body can get, and that it’s happening to us?

Like so many others, when I received a diagnosis of lupus, I didn’t know what it was. I don’t think I had ever heard of it before that time.

I am always amazed by those who became sick when they were very young, mainly because I’m not sure how they got through it then. I’m not sure I would have been able to. And I am humbled to live in a world with such people, but so sad that so many don’t get a chance to see a cure for their illnesses.

Will there be a cure in my lifetime for lupus and/or rheumatoid arthritis? I hope so. If not a cure, will I go into remission? Again, I can only hope.

A popular CF slogan is that “CF Means Cure Found”. So what does lupus stand for? Well, I spent some time thinking about this, and this is the acronym I came up with:


Right now, for me, this is the best I can hope for, as far as my illnesses are concerned. I can not only hope that doctors learn more about these diseases, enough to really provide their patients with help, but I also hope that there will come a time when I really understand my illnesses, how they impact my life, and how I can live best despite them.

Last night, my boyfriend and I watched “And The Band Played On,” a captivating movie about the AIDS epidemic in the late 1970s and early 1980s. What struck me most about the film was how far we haven’t come in understanding and finding a cure for AIDS.

And there are so many other illnesses, including lupus, that this is true of. And so, while May is lupus awareness month, and today is World Lupus Day, I urge readers to look beyond lupus, to learn about other diseases, and to see how truly similar the chronic illness experience is. There are so many illnesses of unknown cause and cure. And that is the thing that has always amazed me. How similar the chronic illness experience is, despite having different illnesses.

1 comment:

  1. As always, I love your writing and clever observations. Your alternative meaning for Lupus inspired me to do one for my illness (Ankylosing spondylitis or "AS")

    A lways
    S searching

    I hope one day there is a cure for all the suffering out there and a greater awareness for all chronic diseases. I'm with you on this. Thanks for your great post :)

    All my best,
    Maya (