Sunday, August 22, 2010

Whittemore Peterson Institute: An Introduction

The above video, created by Peter Cairns, was presented at the August 21, 2010 public opening of the Whittemore Peterson Institute (WPI). It describes the inspiration behind the WPI's creation, the amazing dedication of all its members, and the incredible progress and accomplishments it has already achieved. It also recognizes ME/CFS as a serious neuro-immune disease, and acknowledges the extreme devastation it can have on its patients.

Jim and I were contacted and asked (along with many others) if we'd like to contribute photos, and we were honored to participate.

The Whittemore Peterson Institute is a true new beacon of hope for millions of patients all around the globe. It seems new beginnings are finally ahead!

Sunday, August 15, 2010

Wildlife Window

I wanted to post something thoughtful and even (hopefully) somewhat meaningful today, but it's been a rough few weeks and I'm just not feeling particularly insightful at the moment. Instead, at the risk of looking like the paparazzi of wildlife, I thought I'd share more photos of some recent window visitors.

While it may be rather obvious, I should probably first note that the pictures are not of the highest quality. My window is on the opposite wall of my bed (about 10+ feet away), so I have to try to zoom in through my window screen from afar, and I can't use a flash because it creates a reflection. Needless to say, while I did my best, it's highly unlikely I will be winning a Photographer of the Year award any time soon. :)

Anyway, as previously mentioned in another post, I have recently had a new rabbit living in my courtyard. She made quite a snug little place for herself right under my mesquite tree, and for awhile, she would sit out there for hours every day.

It was interesting to me how she, like me, spent much of her day doing nothing but essentially being still. The main difference (other than that she's healthy and a rabbit, and I'm sick and a human) is that she seemed rather content with everything. As far as I could tell, she was not ruminating about her purpose and the overall meaning of life, nor pondering the why's of what was and what could have been. Instead, she seemed perfectly content in her way of life, patient and quiet and watchful.

And then I realized there was a bit more to her story. One day, while looking out the window, I suddenly saw that the bunny was not alone, and there was a reason she was hanging out in one spot all day. She was keeping an eye on her two little kids, both of whom had apparently been safe in hiding all this time!

How cute are they? By the way, that's a lizard with the two bunnies in that last photo. He seemed to take a liking to them, and the three hung out together for several days.

It was fun to watch as the little ones explored their surroundings and became acquainted with each other. One seemed to be rather adventurous, bravely traveling far in his exciting explorations each day, while the other preferred to stay near home and close to his mother.

I haven't seen any of them in a week or two, so I think now that the kids are all grown up, everyone may have moved on to bigger and more exciting things. :)

There are quite a few round-tailed squirrels who climb the tree outside my window each day as well, looking for mesquite beans. Here are a couple photos of them perusing the branches for some food.

Living in Arizona, I often see a fair share of creepy, crawly lizards as well. I'm not quite as fond of them as I am of some of the others who roam outside, but they are still interesting to look at from a distance...

And of course, the tree and feeders still attract lots and lots of birds. My favorites are the cardinals and finches. I love how they brighten the desert with their joyful songs and vivid colors. Here is a yellow finch sitting on one of the mesquite tree branches, waiting patiently for his turn at the feeder.

But my most interesting visitor of late was one that actually took me a bit by surprise. I was laying here in bed (that's not the surprising part) listening to an audio-book when I suddenly heard a bit of a thud. I looked up and saw something had perched itself onto the screen of my window. It was hard to make out exactly what it was at first, as it was in a bit of an awkward position:

Contrary to what it looks like, that's not a giant bird hanging upside down from a tree branch. :) He's moving himself around on my window screen.

It wasn't until the bird settled himself and peeked in to look at me that I realized this was not an ordinary bird. It was an elf owl!

Elf owls are named after their small size, often just 6 inches in length. They are the smallest owls in the world. They are also nocturnal, and typically nest in natural tree cavities or abandoned woodpecker holes of saguaro cacti. It is therefore very rare to ever see them in the daytime. In over a decade of living in the Southwest, this was my first glimpse of one. Not that I actually get out much, of course, but still. :) It was quite a treat.

We stared at each other for awhile, and I'm not sure who found the other more interesting.

After his curiosity was apparently satisfied, he decided to do a little dance (or, rather, completely freak out) before flying away.

Owl Freaks Out. Was it something I said?

I've also had another bird who seems to like to peak in on me every now and then. For two days straight he would fly to my window and seem to look inside, chirp at me, then fly away only to come back for another look a few seconds later. This actually went on for hours and hours. It was hard to get a photo of him as he moved around so fast, but here is one of the few I snapped as he was checking me out.

Peeping Tom

He still comes to check in on me about once a day. I'm flattered he cares so much. :)

Anyway, so there you have my most recent excitements in my very non-exciting world.

I'm hoping more excitement is soon on its way, this time in the form of a certain paper published in the Proceedings of the National Academy of Sciences. I could use some really good news.

Sunday, August 8, 2010

Primetime Live: CFS and the CDC

The below is a PrimeTime Live news story on ME/CFS from 1996. It covers the history of the original outbreaks in the U.S., as well as the complete lack of a response from the CDC. It is a must-see.

I think what struck me most about the segment was the fact that, though the story aired 14 years ago, virtually nothing has changed since that time. For decades now, the CDC has continuously belittled and essentially ignored this very serious and widespread disease. Meanwhile, millions of those stricken with ME/CFS have continued to suffer and watch their lives slip away, and millions more worldwide have become newly diagnosed. Nearly 30 years since the original outbreak, there are still no viable treatments, very little funding, and a serious lack of answers. How far would we be now in research and treatment had the Centers for Disease Control simply done their job at the onset?

Primetime from Barborka on Vimeo.

You can also see the segment on youtube by clicking the link below:
The CDC and CFS

On a more personal note, it's been a rough month for me with another frustrating crash, and all the subsequent disappointments that coincide with any setback. Things seem a tiny bit better in the last few days, though, and that gives me some hope. Fingers crossed some positive changes are coming soon!