Updates

Hi, everyone, Just a quick update on all the happenings for me over the past month.

Last Monday night I hosted a Meet the Candidates Forum. Every political season seems to bring out the nasty comments. This time around, I’ve been accused of being disrespectful and even “evil” and another person accused me of using my medical condition as an excuse.

Well, gotta address that, cause that just plain sucks!

Yes, I did laugh when a candidate said Quartzsite has 800 years of water, because that was rather surprising to hear, so I giggled. And someone who doesn’t know me accused me of smirking. Yes, I do smile a lot, so I understand how it could be misinterpreted. But just hang with me for awhile and you will see me smiling, even while resting.

Anyone who has been around me for a period of time knows that I am very easy to read. Even before my strokes, most folks knew how I felt.

After my strokes in 2021, my emotions are on a roller-coaster ride sometimes, but thankfully my strokes did not cause the anger so many stroke survivors struggle with. Luckily for me, it’s mostly just the giggles, sometimes at the weird times.

Emotional lability, often called Pseudobulbar Affect (PBA), is a neurological condition causing sudden, uncontrollable, and inappropriate outbursts of laughing or crying. It occurs when a stroke damages the brain’s emotional control centers, creating a disconnect between what a person is feeling and how they express it.

Stress is not a good thing for stroke survivors, but I had committed to hosting the Candidates Forum, and I am very grateful for everyone who helped with the event.

When I participate in large social gatherings with a lot of stimulation, it takes me a while to recover. That’s just my life now. It was obvious I was tired the next morning when I put the cat food in my cereal. Oops! So I took two naps, gathered myself so I could go to the council meeting Tuesday night and record it. I was exhausted, but hey, “chop wood, carry water.”

The next two days we spent driving in opposite areas of the state dealing with medical appointments. Talk about exhausting! But folks kept asking where’s the videos? So Starr worked yesterday getting them saved and uploaded. If you want to see the videos or any other 900+ videos we have posted since 2010, visit www.QuartzsiteVideos.com

June started with my son’s wedding in southern California. Unexpected expenses arose at the last minute, so we weren’t sure if we could actually attend. Stress.

But I am so glad we adventured out of town. I soon realized I haven’t been out of the desert since my strokes in 2021 and was seeing things I haven’t seen since, like these huge windmills.

Each time I saw something new, my brain would automatically search for the name, memories, and references. It was fun for a while…until…

We pulled into a gas station and I got excited to see Ice Plant for the first time in a long time! That was the moment I realized I didn’t have the energy to go down the rabbit hole with each memory. We had a long way to go and I was navigating the route to get us safely to our destination. Did I mention LA traffic? Oh, yeah, on a weekday afternoon. But we made it!

I cannot even begin to describe how wonderful the whole experience of that weekend was for me. Everyone worked together with an amazing sense of intuition. It felt great to be around people who were compassionate and included everyone. It was just the uplifting experience I needed.

My family is special to me, so I don’t share a lot of personal details. Just know I hold these moments close to my heart and am full of so much gratitude. I met so many wonderful folks, including the other mom, Zita! We instantly connected and really enjoyed getting to know each other.

After returning home, I went to work on the paper, had meetings, then hosted the Meet the Candidates Forum. Oops! Forgot all that added up to more stress and I was running out of spoons!

Every stroke survivor has different levels of energy and it can change daily depending upon circumstances. For me, learning about Spoon theory has really helped.

It’s a simple metaphor created by Christine Miserandino, a blogger living with lupus, to explain what it’s like to live with limited energy. In her writing, she uses spoons to represent units of energy. Every task, big or small, costs a spoon. Getting out of bed might cost one spoon. Taking a shower could take two more. By the time breakfast is over, you might already be down a few spoons.

In her 2003 essay “The Spoon Theory”, American writer Christine Miserandino writes about a time she told a friend about her experience with lupus. As they were at a restaurant, Miserandino took a number of spoons from the tables and handed them to her friend. Miserandino said that while most people begin each day with an “unlimited amount of possibilities”, people with chronic illness have to plan their actions in order to conserve their energy. The number of spoons represented how much energy was available to spend throughout the day. Miserandino asked her friend to list the different tasks and errands that she might perform on a typical day, with Miserandino interrupting and taking away a spoon for each activity – such as washing her hair, or standing on a train – that required some effort or would otherwise be affected by lupus.

I also found this cool visual aide that adds to the Spoon Theory. I think this is a good reminder for many of us, not just those with mental or chronic illness. It might help folks remember to be compassionate towards others even if they don’t understand their situation. Maybe they were recently wounded. Just be kind.

When compassion is normal again, we will be a healthier people.

Peace, Love and Joy! Thank you for your support. ~Rain