#32 My ALS Journey—The 2,542 Mile Road Trip

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“ALS could curl her fingers and weaken her body, but it could not take her joy.”

Tricia

 

My mother was encouraged and inspired by the book Until I Say Good-Bye: My Year of Living with Joy by Susan Spencer-Wendel, who also died of ALS. She was gifted the book early on, and I can see so many decisions she made with this book in mind. One decision she made was to write this blog, and every day I am thankful I get to read it and share it with you. My mother would say, “The joy of the Lord is my strength!” I pray you also are strengthened with power, according to his glorious might, for all endurance and patience with joy as my mother chose to do.

-Tricia

Heading home, our last night is spent in Sparks, Nevada. One of a favorite things of Kathy’s is a little gambling, especially Wheel of Fortune. We have given the casinos our money numerous times over the years. Our mom loved to save her quarters and take Kathy and me to Reno for a special girl’s time. We would feed quarters into the machines knowing we would never take anything home with us. When our mom died in 1999, we found cups of quarters in her room. All four kids, our dad, and Cliff went to Reno and played her quarters, again bringing nothing home. We girls would have loved having our mother with us on this trip.

As readers, you must get tired of the bathroom stories, but they make me laugh, sometimes out loud. We stayed at John Ascuaga’s Nugget. When we got to our room, I was shocked when I saw the toilet. The toilet was the smallest, lowest one I have ever seen. Transferring from the chair to the toilet was a drop. Two good things, I had Kathy to help me, and we had purchased a set of portable hand rails, or I would be sitting there now. Again, I wonder if this is more information than you ever wanted to know.

Oh well, my blog, my story. One of my philosophies has always been if it makes a good story, it is worth the adventure.

It was decided by the three of us that if you are not stopping for food, the best places to stop while road tripping is the rest areas, especially in California. They are cleaner, more disabled-friendly, and more accessible than most other places.

Unless necessary, truck stops should be avoided at all costs. Traveling with two women, Cliff has probably seen more bathrooms than he has ever wanted in his lifetime. But, once again, I am thankful for his patience.

While Kathy is anxious to get home to her horse Katie and dog Chico, more importantly, she is desperately trying to get rid of all the remaining snacks she brought with her. So on our short trip from Sparks to Sacramento, she is plying us with Tootsie Pops, peanut M&Ms, chips, etc., which is good since they are doing some road construction on Hwy. 80. Like airplane flights, we need to break up the time.

Our trip was good. I loved spending quality time with my sister, we are so different, but we share a special love and respect for each other. There were times I knew she was sad to see the physical challenges I faced daily. My left leg is practically useless, and my right leg is not far behind. I had some difficulty breathing in the high altitudes, which made me very thankful for my bi-pap at night. I am very grateful I can still use my hands and arms. I am a little scared about managing when that becomes a problem. But, again, I know and need to remind myself to live in the moment, enjoy each day and spend quality time with family and friends, which is the most important.

Thank you, Lord, for watching over me and giving me a spirit of joy and a loving family. I am thankful for your love and mercy. Amen.

–Susan

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One thought on “#32 My ALS Journey—The 2,542 Mile Road Trip

  1. Tricia, what a blessing to have your mom’s words to revisit. Such a beautiful, funny, faith-filled lady. I love how you are sharing about her, along with her posts. Keep it up. I’ve read all 32 in one sitting. Thirsty for more.

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