I Think It's Going To Rain Today

Oh! the things I have thought of to blog about over last couple of weeks. I haven't dropped off the planet! Promise. Just been crazy busy with work and yard-scaping and funerals (yuck) and family events (Hailey turned FOUR) and etc., etc., etc.

I have had ideas to write about. I've gone over words. I've almost decided to write about one of the different topics that seems anxious to get out of my head. However, I'm not going to write about a single subject that has crossed my mind.

I'm going to write about me.

I have been diagnosed with a rare brain disease called OPCA. According to the National Institute of Neurological Disorders and Stroke:

Olivopontocerebellar atrophy (OPCA) is a term that describes the degeneration of neurons in specific areas of the brain – the cerebellum, pons, and inferior olives.

In other words, my brain is slowly going to quit working. If all goes the same as other patients, I'll eventually land in a wheelchair and lose ability to speak, etc. Life expectancy? They say 15-20 years from diagnosis.

Worse things have happened to better people, right? Ugh. I still get a stomach ache when I think about my future. It freaks me out that there is a 50% chance that my kids will have it. I know all the right words. "You didn't know.", "It's not your fault.", "They are not mad at you." I still feel guilty. I still feel overwhelmed with sadness. I still wish that I could take the worry and fear and stress and dissolve it into nothingness.  I just feel guilty.

From the time I was pregnant with Goose in 1986 until just after Tanna was born in 1989, I lived in Ojai, California. I LOVED it there. One of my favorite people in the ENTIRE world is Michele Skankey. I met her in Ojai. Michele, her husband Wayne, Mark Deason and Mark Allman were in a band together. Her boy Nathan is the same age as Tyson and she and I were LARGELY pregnant gals at the same time with Casey and Goose.  Michele can sing. I don't mean just carry a tune. She can SING.

Back on subject

In 1988, the movie Beaches came to the theaters. Because I LOVE Bette Midler and because it's a perfect chick flick and because I needed to get the crap out of my house, Dawn, Michele and myself went to see Beaches. I'm getting old and there MAY be other gals that went, but Dawn and Michele have stuck in my brain as my sisters in crime for the event.

Loved it. Sappy. Sweet. Predictable. Emotional. LOVED it.

IMDb describes the movie as:

A privileged rich debutante and a cynical struggling entertainer share a turbulent, but strong childhood friendship over the years. 

I suppose that is a decent synopsis of the movie. The debutante, Hillary, is played by Barbara Hershey and Bette Midler embraces the character of C. C. Bloom as an entertainer in every degree.

In the movie, Hillary is diagnosed with viral cardiomyopathy. This requires a heart transplant if she is to live. Having a rare tissue type, she realizes she will most likely die before a heart is found. Hillary is sitting in a medical reference library when the Bette Midler begins to sing "I Think It's Going To Rain". The song wraps up with Barbara Hershey staring blankly ahead as she is struck with the gravity of her illness.

This scene has always stuck with me. It seemed so sad. I used to wonder what it would feel like to hear the words that your life has just changed enormously. When I learned the wheels were coming off my own bus, that song is the first thought that went through my head. It thundered like a freight train. Trust me.

I searched and searched for the version I wanted to post. I found a direct link of the song from the movie, but it is poorly made. I settled on this one. Not happy with the "look" of it, but the sound is more clean with much less background noise.

I have always taken pride in being a "smart" girl. I've always been independent. I HATE asking for help and will find every avenue possible to avoid asking.

It stinks that it has become necessary to ask for help with something as simple as walking on uneven ground or maneuvering up and down stairs. I am angry that my family automatically waits for me and lifts their arms for me to hold while I shakily walk and THEN I'm angry if they don't and I have to ask them for aid. I see people playing basketball or running or biking or dancing and I'm jealous. I mark days in my mind when I say "I'll never do THAT again."  And it makes me sad.

So many people have shown me love and support. I am such a lucky girl. I have never denied it. I am surrounded by friends and family that love me EVER so much. I have received calls and cards and messages and offers of help and thoughts and prayers all to ensure that I know that I'm loved and that they are so very worried about me and my family. Me too. 

So, yeah, right now I'm angry and sad and frightened. I'm getting pelted by rain and can't move fast enough to escape. Instead, I have to charge into the storm with fists held high and pray that I find the courage to fight the good fight. And win.