Dear Friends,
Well, I have been having a tough couple of weeks. It has sucked! it is so frustrating that this disability is so unpredictable in its extreme swings. I don’t know why I am struggling, or what I can do to feel better. I am not seeking advice, because I have tried pretty much everything that people suggest. I appreciate any impulse to be helpful, but it is not needed here.
I wanted to share that I have still found small pockets of joy. Moments when my body was able to keep it together on some less bad days. I was able to enjoy an outing to the Hotel del Coronado and the San Diego Zoo, both decorated so festively. And a dinner out and holiday mocktails in one of my favorite San Diego neighborhoods. And today, I went on one of my favorite hikes with my family and dogs, an always empty trail in the mountain area with expansive views out to the desert. Then we enjoyed pie and a stroll in cute Julian town. I felt so free on the trail! And the pie place has a big outdoor seating area that was pretty empty when we got there, so I could dance and gallop around to Christmas music without being too stared at or disruptive.
I love the holidays. It is sad for me that I often struggle during them. But I hope that I will find more joy in the coming days. Anyway, Happy Winter Solstice! More sunlight is ahead. At least for us in the north!
Happy Holidays to all, my amazing community!
Your Friend,
Danny
Danny With Words 
Dear Danny, On this early morning, a few days before Christmas, I took a moment to read your post and I am in awe. This may sound strange to you but I am so grateful that you have a body that does not always listen to what you want it to do because otherwise I probably would not have the gift of getting to know you. I hear your frustrations and I may have a sense of what it feels like. I broke my right elbow in 2022 and I recall knowing how to write but not being able to get my hand and arm to function because of the break – yes! it was frustrating. I imagine you have a similar sensation only yours is body wide, ugh!
What I love most about your sharing is how authentic and real you are. Why do you think your extreme swings are so unpredictable? And would it help if the extreme swings were predictable? If so, how would that help. I ask these questions as a way to help myself figure out how I may be more useful to Joel when he, too, has changes in what his body is willing to cooperatively do with him.
I thank you for continuing to share and I love your description of dancing to Christmas music and SO WHAT if people stare (although I appreciate your not wanting to be disruptive – such a fine balance). You are worthy of every ounce of attention anyone pays to give you.
By the way your mom is so cute! I just want to reach out and hug you all! I wish you the best Christmas ever and I thank your body for being exactly as it is.
With loving gratitude (taught to me by Joel), Kari
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