This morning our friend Lauren texted us to see if we were up for helping set up a new Irene evacuation shelter they were opening near Union Sq. It makes sense that there would be need for a massive number of volunteers across the city, but neither Annie or I had heard anything about it on the news. Had Lauren not texted us, we probably would’ve stayed home, worked, took a walk, and slowly prepared the rest of the apartment for Irene. Instead we spent 5 hours doing some serious sweat labor to make sure those in need, and their pets, had a safe place to stay during the hurricane. I appreciate having people in my life who think about others as it helps me to remember to think about others. Not only does helping others help them, it also has been scientifically proven to make the giver feel good.

For most, today is Tuesday, May 10th. For 1.5 million Americans plus their family and friends, today is World Lupus Day. Lupus is often known as the silent killer because it is vastly under funded, reported, and treated. Lupus is a complicated autoimmune disease in which the immune system attacks a person’s own cells and tissues along with a plethora of additional side effects. There is no conclusion on how one gets Lupus and there is no single test for diagnosis. For those living with Lupus, which is 90% women, it’s something they’ve learned to live and deal with on their own terms.

My wife Annie has Lupus and has lived bravely with it since 2000. Today, while searching for a work related computer file, I randomly stumbled on a paper she wrote in college about her life with Lupus. In honor of World Lupus Day, please educate yourself about the disease and read Annie’s full essay below…

My Life with Lupie – @AnnieColbert

I felt like a dork, standing nearly naked, only wearing mismatched socks and a paper gown, battling unsuccessfully with the plastic “belt“ to cover as much of my winter-white pale skin as possible. I hate paper gowns. If sitting in a doctor’s office does not make you feel uncomfortable enough, the gown will surely increase your anxiety. In all of my vulnerability and uneasiness of the moment, the doctor unexpectedly introduced me to my new friend Lupie. The beginning of our tumultuous relationship lacked an instantaneous bond. At seventeen, years of chronic illness already weakened my physical strength and my mental strength drained when Lupie arrived. Lupie possessed an amazing presence and intimidating strength, yet was quiet and mischievous.

Our constant companionship and Lupie’s desire for social isolation led to inevitable personality clashes, as I prefer social interactions. Early mornings sparked our most hostile confrontations. Lupie drowsily laid in bed, eager to sleep the day away despite my stubborn insistence to be active. Our confrontations tested my physical prowess, and often brought me to a state filled with shooting pains stabbing at my joints. I would lay in such pain that my only motion was to wipe the tears streaming down my feverish face. I triumphed occasionally, dragging Lupie around with me to school, but Lupie and I soon realized the lacking compassion expressed by students and administrators made our attendance unwelcome. Lupie’s introduction to my other friends garnered disparaging reactions ranging from complete disregard to harsh criticisms. Ridiculing comments concerning my dependence on Lupie faltered my attempts for a ‘normal’ high school experience. Lupie and I were alone.

Continue reading on her blog…

 

Annie and I are traveling on a Megabus down to DC right now for the Rally To Restore Sanity and I can’t help but compare this bus ride to what it must have been like for my hippie parents during the 60s riding to DC to protest.

Beyond the differences in circumstances and purpose of the two rallies, I’m talking about the difference in riding the bus.

Looking down the bus aisle right now, every single person either has a smart phone, iPod, or laptop that they’re plugged into. Some are writing (like me), watching videos, surfing the web, or listening to music. And while we’re all riding the same bus, heading to the same place, and generally of like mind, we’re all absorbed in our our world. There’s no group chatter, or singing, or socializing.

It’s interesting to see how technology can both simultaneously bring us closer together and pull us apart at the same time.

Of course my idea of what the bus rides must have been like in the 60s has been romanticized many times over by hollywood so maybe they also curled up individually in their seats with a book, but somehow I doubt it.

Part of being politically active, is to be willing to stand up to my own party when they are wrong. I voted Democrat in the last election, and many others prior, and I'm annoyed they are trying to pass the blame for the health care not getting through, on the Republicans. My friend, Jamison Kingfield, hits it on the nose with his reply to a campaign letter from the DNC Chairperson, Tim Kaine