#13 My ALS Journey—Three Decisions

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This might be a good time to point out my mother’s writing style in her posts and how I’ve decided to present them. At first, my mother wrote her blogs by typing on her iPad.  Later, as she lost mobility in her hands, she wrote using a mouse mounted on her glasses and, with her thumb, clicked on the appropriate letter with a button attached to her hand. The day before she died, I walked in on her, teaching a friend how it worked. That was so, mom.

As you read this post, you will understand her writing style a bit. First, she did have physical limitations to correct punctuation, etc., but she also didn’t care a bit about her grammar. She wrote freely and without concern for how others thought it should be done. She had limited time and resources and wanted to use them both wisely.

For this purpose, I have “cleaned up” her writing just a bit for readability. I don’t want you to miss her point just because she misspelled a word. If you find a type-o, she wouldn’t care.

–Tricia

We just returned from three wonderful days in Carmel, one of our very favorite places. Cliff and I have visited the Carmel area at least once a year since we were married 41 years ago. The weather, the ocean, the food, the sights, and of course, the shopping draw us to the area. During our brief sojourn, we were reminded of three decisions we made in August 2011.

We made three decisions with serious prayer and discussion when I was first diagnosed with ALS. The first decision: we will not travel all over the world seeking a “faith healer.” We both believe God can heal and that he hears and answers our prayers and those of our family and many friends, which we greatly cherish.

Second: we will not spend our time and money traveling all over the world seeking the latest medical breakthrough. We say “thank you” to all of you that have sent information on all the various products, pills, juices, and diets, we know your hearts are right, and you deeply care about seeing me well. The bottom line is that we have limited time and resources and want to use both wisely.

What happened this week in Carmel is a good example of our third decision: we will do whatever we can and not fret, stress, or worry over those things we cannot do. For example, when making hotel reservations at one of our favorite places, Cliff reserved a handicapped room with a roll-in shower.

To be fair, the room was clean, neat, and recently updated to meet the ADA requirements. The problem was it appeared as though the hotel management took a room that was difficult to fill and turned it into a handicapped room. We did not have a choice of other rooms facing the gardens or having a balcony as we have had at that hotel in the past. It was dark, small, and on the first floor facing the back parking lot. In addition, I could barely navigate my scooter around the beds to get to the bathroom, which could be a problem. We checked out and moved to another hotel.

In downtown Carmel, we encountered another obstacle. We could not find disability parking with van access, so we couldn’t put down the ramp for me to disembark from our van. So, instead of doing our usual Carmel routine, we found new places to eat, shop and experience the ocean. We are definitely on a learning curve.

I am blessed to have such a fantastic, agreeable, flexible husband who wants to take good care of me. We had a great time, and after he washed and cleaned up the van today, he came in the house and wanted to know when I would be ready for our next trip. I told him I would go pack my bags.

–Susan

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