All hail the vampires

Shout out for Stephenie Meyer obsession! Aug. 2 marks the release date of the final vampire book in the Twilight series. I devoured all the Anne Rice vampire books. They are long finished and there are no more to be had. I saw a review of the 3rd Twilight book in Entertainment mag. What caught my eye was that it said the 'ethical' vampires lived in Seattle (in my beloved Washington state). A co-teacher said, "Duh, who hasn't heard of those books?" And led me to the school library. I read books 1,2, and 3 in a few days. I was hooked. The reviewer was in error, though. You know how EVERY place in Washington is Seattle? The primary setting of the tale is Forks. This is even better. I've been there. It's more interesting than Seattle.

Don't let the fact that these books are intended for teens. They are well written and engaging. Since they are for kids, pretty darn clean, too. But Meyer can spin a tale like nobody's business. It is all about love, loss, and longing. Who can't relate to that?

Stephenie also published a book for adults this spring called The Host. I don't know if I have ever cried so much reading a book. I have a soft place in my heart for self sacrifice for others in the name of love. And the topic is so interesting. Sort of Invasion of the Body Snatchers from the point of view of the alien. It puts that story on its ear. It also bears similarities to tv/movie's Star Gates in the Goauld's (sp) misappropriations of others' bodies.

Meyer has been compared to J.K. Rowling. Rightly so.

My Amazon-ordered book will arrive soon. Don't call for a few days; I'll be busy.

Happy reading!

Some less than sunny thoughts

I am more than my MS. I am sure of it. At times it doesn’t seem possible that there is room to be anything but the MS. It reminds me daily of its presence. When I wake up and find my eyes don’t work or I can’t stand up, it beats me on the head.

The biggest tragedy of MS, in my perspective, is that is robbed me of the years in our lives when we usually feel the best (30’s). I got sick first at 29. It mostly went away for the next 12 years and I lived in denial as much as possible. My mother even said that maybe they diagnosed me wrong. Then my evil little friend decided to remind me of its ever present self in my life.

I learned that while it may not be visible, the disease marches silently on, damaging the brain. Only 10% of brain scars show up on the ‘outside’. The rest are not observable. When I first got sick at 29, there were no drugs to treat MS. I went for most of the next 12 years without treatment. When I got sick again, an MRI showed innumerable black holes in my brain.

When 40 came, a rash of exacerbations wouldn’t quit. I’ve been hospitalized twice. I had repeated bouts of optic neuritis, one of Bell’s palsy, and brain stem scarring that resulted in massive muscle loss. No more room for denial. I used to be able to ‘pass’ for normal. Not so lucky any more. I now have a cane, walker, and scooter to use when needed. It is hard though. Everyone can SEE those things. I have see people in scooters get run over in Costco. People with obvious disabilities are often seen as less competent. I know many have written on this topic. I know ADA is in place to help. But it doesn’t fix the inside of me. Having a child with disabilities awakened understanding and compassion in me that wasn’t there before. I think that has helped me deal with my own losses.

At 40, there were now the ABC drugs. I had a short run on interferon. It made me sick every other day. So we quit that one. Next we tried betaseron. I had exacerbations 3-4 times a year. So we now are using Copaxone. Even that didn’t do enough. Finally my neuro added Cellcept, a drug to fight organ rejection in transplant patients. That appears to have done the trick. I haven’t had an exacerbation for nearly 3 years.

It kind of comes too late. I lost so much balance, strength, and coordination that don’t seem to want to come back. Now I approach 50 with no confidence in my ability to maintain my lifestyle. I still can’t talk about early forced-retirement without crying. It is getting harder and harder to do my job. But Mossy and I are not living in denial so much any more and are trying to prepare for the loss of my income. I just hope I can put it off as long as possible.

My favorite MS mottos:

MS- my personal thrill ride

MS SUX

Of Beards and Such

My first awareness of the use of the term ‘beard’ came from a tv or movie reference to a gay man taking a woman on a date to cover up the fact that he was gay from his family and friends. But I think there are many shades of beards.

I use my daughter as a beard when I buy her season tickets for Broadway Shows in Spokane. I say buy them for her, but it turns out they are just as much for me. I must admit I am a musical junkie.

I use my kids as an excuse to go to places like Disneyland. My problem is that they are growing up and don’t really want to go any more. I am going to have to admit my enjoyment of the parks without my kid crutch.

My husband uses our kids as his beards to go to every kind of kid movie. I am just waiting for the day neither of the kids wants to go any more and he will have to admit how much he enjoys those movies.

And then there is my son. In the full bloom of puberty, he uses a myriad of beards, all to meet girls. Going to the pool to ‘swim’. Joining the track team ‘to run’. Going to a church dinner ‘to learn about 'religion’. And this list was just from the last week.

I am positive that this trick of using others’ as our beards to cover our true motivations is widely used beyond my household. Of course I could be wrong and we could be the only people living in denial of our true motivations. Or you could admit you do it, too!

my sunny side revealed

Being behind the wheel brings out the sunniest part of my disposition. The limits in the mobility world vanish when on the road. These pix are from the same 20 miles of road, around the year.

I have a friend/coworker who lived out of our school district and had to drive every day. I listened to her complaints for years. Then we moved out of the district and I had to drive as well.

So to counteract her negative perception, I began to carry my camera and document the drive to work. I had a few rules for myself: I had to take pix from my car, drive at the normal time for work, and stay on the road (stopping was allowed, of course, so I wouldn’t die in the attempt).

Wow. Talk about changing the view; or the perception of the view. I started to show her the images I captured. (We go on the same road at the same times).

She doesn’t complain any more. And I am never tired on the way to and from work. There is so much to see. I don’t know if the same could be said of a freeway commute, but you never know.