More thoughts on ALS and my trip/journey to Phoenix….
ON THE ROAD AGAIN….
Bill and I decided it was important for me to get to Phoenix for a show my company was producing which I wrote and needed to stage/direct.
It’s a big challenge to drive that far - not to mention the challenge of packing all my “equipment” into the car. Kudos to Bill for agreeing to take it on
We got advice from our road-hardy friends Seth and Charlie whom, with the work on their book Ranch Raised Kids, know all the best places to pee along the 400 miles from here to there. Very important! PS- Starbucks wins Best Toilette!
What did I learn along the way? The not great answer to that question is that I can see, despite all the efforts we are making to postpone the advancement of the symptoms - I seem to be getting worse.
The positives that I came away with, however, were many. Truthfully I was not looking forward to being with my fellow performers and friends, in my diminished condition. It would be the first time I would be seeing these people and that’s always hard for me emotionally. As my barn family knows only too well, I burst into tears every time I see one of them, each time I do….Plus for the first time in the 30 years I’ve had my own production company, I would be working on a show that I wasn’t going to be in! And I’m such a hambone! This was going to be difficult. Bill brilliantly purchased a “Madonna” type microphone that has its own little speaker, so when we were at rehearsal I was able to be heard and understood. I REALLY loved directing a show that I wasn’t in. Much better direction than ever and it was satisfying to help performers be their very best.
On the other hand, it was extremely difficult to watch a show that in another world, I would have been emceeing. Which brings me to Bethany Owen. She is a super talented vocalist and impressionist. We have travelled in the same circles for many years. I would have been hosting this show as Elvira- a character I’ve been doing for many years. Bethany also performs as Elvira. So she stepped into the show for us. So kudos to her. Knowing that I was there in my condition, wishing I was doing what she was doing. She stayed focused and loving and did a wonderful job as the emcee.
And Gailyn…my partner. Loving and supportive. So THERE for me throughout all this- and not freaking out that her partner is in a wheel chair and was going to be at the gig. She encouraged me to make the trip and I love her for that.
Being in Phoenix I was able to spend time with my nephew and his wife sarah and their kids Alex and Enzo. Talk about restorative. Two beautiful children. Two wonderful parents. And sarah had her friend who is an esthetician come to the house and give me a facial. Which was spectacular.
MORE ON HAVING ALS….
Things that I miss doing that, I wont say I took for granted, but are really rolling through my brain every day :
Hiking to the Hollywood sign with my dogs
Riding to the Hollywood sign with my horse
Riding with Pat, mostly, lately, through the cemetery loop and oak canyon. Or the landfill.
Driving my car. By myself. Getting out of my car by myself.
Dashing into a store on my own feet. Shopping. Buying tee shirts or shoes or jeans. Hell. Wearing shoes that fit! My favorite Ugg’s. My suede boots. MY COWBOY BOOTS!!
Not having to wait for someone else so I can eat or drink what I choose to eat or drink.
Turning over. Scratching an itch. Sitting up. Having muscles.
I am praying that I can keep my upper body from degenerating too much or too soon. If I can’t use my hands to pet my animals….well! Unthinkable.
Ok. So that’s that. Thank you all for your generosity. Unbelievable. I love your visits. Your food. Your thoughts and prayers.
Love you.