There are times when I don’t know where to begin… when an idea for a blog posting grabs hold of me and shakes me to my very foundation. When a plethora of thoughts and emotions swirl savagely throughout my mind leaving me with no place to start.
Julian Lennon with Mom, Cynthia, at the Lupus Foundation of America, “Butterfly Gala 2010″ in New York City
The month of May is dedicated as the official month for Lupus awareness, and it was announced late yesterday that Julian Lennon has been chosen as this year’s Global Ambassador by the Lupus Foundation of America‘s National Board of Directors. The honor of being named this year’s ambassador was bestowed after an almost-lifetime dedication to the cause. You see, it’s not by some fluke that Julian was picked. Many years ago when he was just a child, he drew a picture for his father, the infamous John Lennon, depicting his friend, Lucy. She was also one of the many who was striken with this unrelentless and often-debilitating disease. John went on to write The Beatles hit, “Lucy In The Sky With Diamonds“, having been inspired by the picture that his little offspring scribbled onto a piece of paper.
I could make this a very long posting, filling you with statistics and random medical facts of Lupus, but instead, I think I’ll just jot down a few basic facts to let you know, in case you don’t already know, a little about the wolf within…
There are two main types of Lupus (Greek: Lykos, meaning wolf): Discoid Lupus, which affects the skin, and Systemic Lupus Erythematosus, which affects all the internal stuff. Of course, there are many sub-categories, such as Lupus Nephritis, which also brings along a whole spewing of even more sub-categories. Let’s just stick with the basics, however, instead of making a posting which would qualify for listing in a medical journal.
There are approximately 5 million people world-wide who are affected by this autoimmune rheumatic disease, and most likely, this total includes people you know. It’s not always visible, nor is it something that you’d figure out if the person didn’t tell you they have it. And no two people are alike in their symptoms, in their afflictions. What hurts today may not hurt tomorrow. The tell-tale sign of Lupus is a butterfly-shaped rash on the face, but not everyone afflicted has this rash. There’s no definitive test for Lupus, just a series of qualifications to be included in the tally of those who have it.
There’s no cure, either.
It can be life-threatening or something you just learn to live with, depending on which tissues/organs are striken at any given moment in time. You can wake up today feeling wonderful, standing on chairs to clean the very tippity top of the kitchen cabinets, and tomorrow you may find yourself unable to get out of bed, unable to walk those 4000 miles to the bathroom, those 10,000 miles to the sofa. In a nutshell, you live each day grateful for whatever DOESN’T hurt, and if everything hurts, well, you hope tomorrow will bring a better day.
You can’t “catch it”, you just wake up one day realizing something’s not right. You may have had it for years and no one ever thought to look for it… Doctors are just too busy now-a-days to dig deep inside. You present symptoms and they throw a label on you. But with Lupus, the label isn’t clearly written. You may have the symptoms of some disease, but not the actual disease itself. Your immune system is in overdrive, attacking healthy stuff… making you appear to have something that you don’t. Doctor after doctor unable to find the true culprit because they usually don’t bother to put two and two together. Some people are even labelled as hypochondriacs and told to go home. Others are referred to pain management clinics for pain-killing drugs in the hopes of silencing their cries for help.
Ms. Lucy Vodden was only 49 when she succumbed to the dreaded wolf in 2009. That same year, friend, long-time Lupus supporter, philanthropist, and musician Julian Lennon, along with James Scott Cook, released the song, “Lucy“, in honor of Lucy Vodden.
Proceeds from the song benefit the Lupus Foundation of America and the St. Thomas Lupus Trust of London.
Although forty years had passed since Julian brought that little scribbling home, completely unaware at the profound impact his sketch would make on so many lives, everything came full-circle. His little schoolmate put a face to a disease. She, and he, would touch the lives of so many unknown faces in the vast forest of Lupus sufferers.
The following acoustic video is brought to you by the LFA, and in it you will not only hear the actual track, but you will also hear Lennon and Cook’s connection … inspiration, if you will … to the reason why they decided to make this a charitable song instead of just another studio track made available for sale.
So, for all of you Lucys out there, here’s hoping today found you with a ray of warmth … and may you always shine brilliantly like diamonds in the sky …
For more information on the Lupus Foundation of America, click HERE.
For more on the LFA’s selection of Julian Lennon as 2011′s Global Ambassador, click HERE.
For more on the symptoms of Lupus, as well as diagnosis and prognosis, you can visit the LFA HERE, or, another medical website, MedicineNet.com, that I personally like can be found HERE. (In all honesty, there are lots of medical information sites I like, I’m throwing this one out, but you can always search for more through your own search engines. As always, when in doubt of ANY medical condition, PLEASE contact your doctor or hospital. Although I may speak harshly at times, I do hold all my faith in the medical staff and their expertise.)
You can also follow announcements, breakthroughs, and happenings by joining the LFA on Facebook, HERE.
… and because I keep singing this song in my head as I write this posting … here’s a completely unrelated song (except for its title, which always starts playing whenever I think of Lupus) “For The Wolf Within” the 1996 release by Greece‘s The Flowers Of Romance. If you listen closely you will hear Wayne Hussey (Sisters of Mercy, The Mission UK) on second guitars. (I do so love this album.)
Sending you our wishes for a safe and happy extended holiday weekend. We’ll be back on Tuesday with more postings, rants, or raves.
… and don’t forget … charity begins at home. We’re all suffering from serious financial constraints, however, there are many other ways that you can give without money. Raising awareness is one, offering to help out a lupie during those “down and out” periods in time is another. Be creative … use your imagination! I’m sure there’s a whole plethora swirling about inside you if you only look deep enough to find it …