Wednesday, May 28, 2008

It's a strange world we live in where elephants make music, cranes dance, and some bugs carry their own flashlights. And yet I think in such small and insignificant realms when thinking of things "I" can accomplish.

Today's list of things to do:
Wash the dishes
Wash a load of laundry
Dry a load of laundry
Try a new crockpot recipe
Put the clean clothes away
Get cleaned up for work
Work at the library for four hours
How pathetic a list is that? And this is a creative, energized, kick-ass day. Yet too often this is all my energy allows. Some say its age. Some say it is Florida (perennial retirement mode). Some say I'm stressed and need to relax even more.

I think what I need is motivation. When cleaning house I usually play my Queen CD and get alot more accomplished. If music can soothe the savage breast, soften rocks, bend a knotted oak. Perhaps it can get a lazy woman to move her butt. The soundtrack from "Chicago," the movie, seems to produce similar stimulation. But I keep trying to sing with it and then I want to dance. Not a pretty sight.

Maybe some inspiration. I picked up a copy of Julia Cameron's "Heart Steps: Prayers and Declarations for a Creative Life." The title tires me out just reading it. But I have Chicago playing, so I can handle it.

The titles of her segments are big chunks to swallow without reading anything more.
1. The Universe responds to my dreams and needs
2. I have the power to receive great abundance
3. The dreams of my heart are the dreams of the Universe dreaming through me.
4. The great Creator creates through me
5. The Universe watches over me with care....

I stumbled on the concept that the Universe even knows I exist! Power to receive great abundance? Is that a good thing? I wish the Universe, if it is dreaming through me, would also provide instructions on how to accomplish those dreams! And, if it cares so much why is one of my good friends tooling around in a wheelchair, another is facing death by lung cancer (4-6 months to live) and my husband, well you've heard that story.... Not to mention that my brother -- MY BROTHER -- is a Republican! He voted for Bush -- twice! And my knee hurts.

It seems my abundance has been rather negative.

Oh I know that whole story about 'cup is half empty' attitude colors what I see. So what abundance have I received --

  • April was a good month with three major markets publishing my writing.
  • The sandhill cranes that live next door have two babies that we're watching grow up. I haven't seen any of them dance, but then I think the dance usually precedes the kids and parenting.
  • Derrol and the riluzole seem to be getting along well and he starts the lithium soon. We live in hope that it will arrest the progression of the ALS.
  • I have good friends who AREN'T dying or fighting disabilities -- yet.
  • I wasn't one of the 70-plus people the county laid off/fired/let go in order to balance their budget.
  • I don't live in China
  • So far no hurricane has blown us away.
  • The clothes washer and the dishwasher are working nicely.
  • My two sons not only love me, they like me, too. And I like them (I adore them).
  • My husband loves me. I love him. His bad habits aren't any worse than mine.
  • I've been reading some good books lately. Thank you Universe for Highlanders.
  • I was never married to Julia Cameron....
I guess if elephants can play music, bugs can flash their tails, and cranes can dance, I should be able to get the Universe, the Great Creator to help me do more than the laundry.

Saturday, May 10, 2008

Seven Wheelchairs available at Amazon!!!

Whenever a bell rings, an angel gets his wings AND an author gets published. Do you hear that bell dinging? Gary Presley's memoir is listed at Amazon and we can pre-order his books for delivery in October. Tra-la- tra-la. The angels are singing and waiting for their books to arrive.

I've placed my order. Have you?

Why would I, you ask? Well, evidently you don't know Gary if you must ask. He's unique, and his life's story is a delightful blend of humor, anger, frustration and unvarnished truth with a touch of romance. You think life has been rough for you? Think about turning 17, anxious to step into manhood, ready to grab the world by the tail and make your mark. He was so ready to take that step and then polio made it impossible for him to ever take another step. For the past almost 50 years, Gary has fought for every minute of quality of life. First entombed in an iron lung he helplessly lived at the mercy of white hatted nurses, orderlies, doctors and that unfeeling machine that pumped air in and out of him when his own body refused.

His book "Seven Wheelchairs" tells about his journey 'boob high' to the world. He doesn't cover up, draw back or sugar coat anything.

The book, beautifully written, honestly told, is enough reason to put out $17 for a copy. But for us there is more to the story. Gary has been a friend for almost a decade, beginning as a fellow writer at the Internet Writing Workshop and then becoming my strength when my husband was diagnosed with ALS and we had to quickly learn about living with a disability.

Gary shared tips and contacts concerning wheelchairs, navigating in one, and where not to go. He mentioned opening doors -- who knew it could be so difficult to get into and out of a building or room based solely on the type of door handle and hinges? Who thought about taking along a urinal for those times when a handicapped accessible bathroom doesn't present itself.

Who knew how much anger we would feel when someone parked in a handicapped space, leaving my husband to try to walk across the parking lot. Then find out they were making a delivery -- no handicap sticker, just a big old Mercedes and a lot of ego, and the temerity to tell my husband that it wasn't a big deal.

Gary knew everything, including the anger. It took him alot of years to laugh it off. He's helping us to do it in a much shorter time.

If anyone wants a clearer understanding of living with disabilities, how to socialize and interact and understand a person who must go through so many more hoops just to get his pants on in the morning, then read Gary's book.

Friday, May 2, 2008

It Could Happen....

When we share our lives with a rare, deadly, incurable disease like ALS, our thoughts tend to stray to what ifs and wishes as well as pleadings and prayerful deals.

Lately my thoughts have turned to synchronistic and outright unbelievable treatments and cures, medicines and science that makes me believe that a treatment and yes, even a cure, for ALS cannot be far away.

Brian Williams gave me hope -- hard to believe that the nightly news could instill hope in anyone. But watching the segment about dancing one's symptoms away, made me realize that stranger things happen than finding a way to defeat ALS.

In the segment people with Parkinson's Disease learned that dancing made their symptoms disappear. While dancing their hands no longer shook, their brains cleared, the voices returned to normal. They were, like Cinderella at the ball, magically transformed. Of course as soon as they stop dancing, the clock strikes midnight and they once again don the tattered clothes of Parkinson's Disease.

Doctors don't understand why dancing works. Which gives me even more hope that some strange and wondrous cure will be found for ALS. Recently a scientist in Italy combined riluzole, the one drug found to slow the progress of ALS, with lithium. Alone riluzole only brings about a 10 percent decrease in the progression. Together with lithium, they stop the progression. Stop it. Stopped it in every member of the study who took the combination of drugs. Stopped it for two years, I'm told. Maybe as long as they take the combination it holds the disease at bay.

It certainly is worth giving it a try.

What may be even more remarkable than a scientist figuring out the need to combine these two unrelated drugs, is the idea to use riluzole as a treatment for ALS. I've been told that it is actually a detergent. A cleaner. A cleaner as in laundry detergent.... I am still not sure I believe that information, although it came from a reputable source. Maybe I misunderstood. A laundry detergent slows down the progression of ALS. Amazing.

Maybe it ranks right up there with injecting a disease into a person to make them immune to the disease. Or what about people chewing on willow twigs to cure a headache or licking a frog for pain relief or sticking tiny pins in their bodies to cure whatever ails them. Maybe it ranks right up with meditation and prayer for miracles.

But, when you share you life with a rare, deadly, incurable disease like ALS, tilting at windmills, grasping at straws, believing in the unbelievable becomes a way of life. After all, accepting that such a disease has attacked my husband, changed our lives forever, is also beyond belief.

He takes the first step this weekend toward including riluzole and then lithium in his daily treatment. We welcome all prayers, good wishes, happy thoughts, glass slippers....and most of all we pray for 'happily ever after.'