Thursday, November 17, 2005

And to reiterate...

For those of you who do not read the Divas blog...

This month marks a year since someone I was close to passed away. To be specific, it was my ex-boyfriends Aunt, who I got to know pretty well in the time that we were together. We did some cooking together, a little shopping, trip to the Zoo. Then she started having trouble moving her neck, and had pain in her shoulder. After a month or so went by, they finally got to the root of the problem; it was ALS, aka Lou Gehrig's disease.

The abridged version of ALS (Amyotrophic Lateral Sclerosis) is that it's a muscular neuron disease. Basically, it slowly deprives you of all motor functions and renders your muscles completely usesless, and caused degeneration of the brain and spinal cord.

There is no cure, and most all treatments become pointless after a period of time. It's final, and it's the worst thing to witness someone you care about going through.

I was reading the last book in The Dark Tower series that morning. I had just gotten to the part in the book where Eddie, my favorite character dies. I was crying, but not just crying. I was *sobbing*, full-force body-shaking sobs, complete with snot and puffiness in the face. I sat there thinking, "I can't believe I'm crying like this over a BOOK". Not five minuites later the phone rang. Laura had died. We drove over there to sit with her husband while he waited for the funeral home. I knew this was coming, I was prepared. But I had just seen her the night before, though she may or may not have seen me since at that point she had finally gotten a morphine drip. I had cleaned her face and brushed her hair, held her hand while I read my book, the sound of her breathing machine a heartbeat in the background.

There wasn't going to be anymore brushing hair, no more cooking together, no more trips to the zoo. No more hearing her yell "FUCK!" when I beat her at Scrabble. It was just...the end.

We found out that she had ALS in June. She died in early November. She had five months with a rapidly deteriorating quality of life.

As I said, there is no cure. But there is research in the works. Which is currently being hindered by the current administrations ban on using new stem cells for research. The National Stem Cell Information Site describes Stem Cells as "Serving as a sort of repair system for the body, they can theoretically divide without limit to replenish other cells as long as the person or animal is still alive." The ban needs to be lifted on the research on new stem cells, which are not only invaulable to ALS research, but also Parkinson's disease and a host of others.

Please visit The ALS Advocacy Page as well as the infomation page for HBO's documentary Three Sisters and read about Jennifer Estess, who lived six years with ALS and helped raise millions for research, awareness and advocacy.

2 comments:

Adam said...

sorry to hear that...diseases that slowly rip life away are the worst. i would rather die quickly myself but...i too know what it's like to get close to a significant other's family. when she and i broke up her aunt and uncle told me that they thought i was awesome and was welcome in their home anytime.

Michaela said...

I read this post over at Diva's, but it's still so touching to read. It's a disease that many people don't know or understand, and one that they should!