ALS update

I am going to take a moment out of my regular light-hearted posts to vent and share an emotionally charged day today. As all of you know, my dear friend Julie is suffering from ALS (Lou Gehrig's disease) for the last 2 years. It has slowly robbed her of her ability to use her hands, lift a coffee cup, walk to the bathroom, eat, and now the ability to speak in a coherent manner. Soon, breathing will not be possible. I had my regular visit today and was greeted on the porch by Sally, her sister. She wanted me to be aware of the changes that have just occurred in the last 9 days since I have seen her.
Yep, 9 days ago, she had been eating some soft foods. Once she was on a roll with talking, I could understand 70 percent of what she wanted to share. Today, she is on morphine every 2 hours. She is not eating, but able to sip water and other liquids. She faded in and out when I was there. I understood nothing. Except a comment she made about not being able to share her jokes because people didn't understand her anymore (last time I was there she told me she was like Helen Keller..and her words were the same..water is now waaaaaaaaaa). I also understood I love you. She can move her head slightly. She can look right at you intensely in hopes you know what she is trying to say in her silence. And I did. She can cry. And we can share that as well. Hardest thing about this? Knowing behind her non ability to speak is Julie. Who I have known and loved for 35 plus years. Too bad I can't jump into her brain for a while and chat. Like old times.
I so miss her silliness. I miss her adeptness to find complicated situations and make a big joke out of it. I miss her playing the saxophone, even though she hasn't played for quite some time. Oh, how I miss dancing with her. Playing darts at the dart parties. Late nights in Baltimore where we would go home at 1 AM to get money to drink more, even though the bars closed in 20 minutes. I miss her musical instruments that always came with her to parties. I just miss her even though she is still here.
No one should have to suffer from something like this. It's inhumane, cruel, and miserable. Yet, as I left her this afternoon in tears, she simply looked at me and said "Waaaaaaaaaaa......" I left with laughter.

Julie died Sunday morning, November 17th quietly at her home. She had the great fortune in being able to live in her house til the end and be cared for by friends, family, and caretakers. Her friends came regularly to share shots of tequila and fabulous prepared food when she still capable of swallowing. She shared lots of laughter despite what she was facing and she was determined to focus on what was good and present, not what was coming. She made it to a baseball game where they arranged a skybox for us. There were regular girl's weekends, baseball watching, and making sure her cats got attention as Julie lost her ability to pet them. We love her sisters for making it possible to have Julie live and be where she most wanted to be-her home with her animals surrounded with all the people who loved her. Peace has arrived for her, which brings some comfort. Go ahead.