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A Rule Book
By Susan Catlett
A Rule Book. That is what I need, something to tell me what to do and how to feel, because I don’t know. Almost two years ago, I had officially been diagnosed with ALS. I was working at Heald College in Roseville and still able to drive. For some reason, I had left campus in a reasonably good mood, probably to grab a quick lunch, when I was unexpectedly emotionally assaulted with the reality of my ALS diagnosis. It was possibly my most emotional breakdown. The deep, huge sobs were coming from the very core of my being. I felt alone, afraid, overwhelmed, overcome, out of control, etc. I remember it like it was yesterday.
In the middle of my mental collapse, I called Ken, my Psychologist friend, whose office, thankfully, is in Roseville. I needed to talk to someone who could be objective and honest with me. Fortunately, he had an opening in his schedule and could see me within the hour; this gave me a little time to pull myself somewhat together before I popped into his office.
What I remember most about our conversation is what I kept saying to him, between sobs, “I don’t know what the rules are; I don’t know how I am supposed to act; I don’t know what I am supposed to say; I don’t know what I am supposed to do; I have never done this before.”
I want a book like Emily Posts’s book on Etiquette to tell me what to do in difficult situations. I found no Rule Book to tell you how to behave or what to say or do when given devastating, life-altering news. My diagnosis is almost two years old, and I have no more understanding of how to handle this disease now than I did then emotionally. Yes, I have more knowledge about the disease; yes, I have more resources; and yes, I have a great support group, but there are no rules for the emotional challenges. So, I guess I need to write my own Rule Book.
I am gathering rules and putting them in no particular order. I told my daughter this morning about my Rule Book, and her comment, “That is funny coming from someone that doesn’t like rules, boundaries, or boxes.”
To be fair, the rules I am gathering are not original to me. They come from life experiences (mine and probably yours as well), books, articles, and sage people, friends, and enemies. I am not fussy about where the info comes from as long as it is good. These are my first three rules. Stay tuned. There are more to come.
Rule #1
Live in the moment. This was a huge takeaway from meeting with Ken, my Psychologist friend. Like most people, I tend to jump to the end of the story, anticipating the very worst. When I remember to live in the moment, it is less stressful. It causes too much anxiety to live in the future without all the facts.
Rule #2
Do something you like daily; give up housekeeping and cooking as soon as possible. If someone asks what they can do for you, hand them a mop. If they come back, you will know they like you.
Rule #3
Dress up to go to the doctor. They are more apt to take you seriously than if you wear your pajamas to your appointment. I learned this when I would go with my brother Bill to his doctor’s appointments. Frequently, he would be treated with disdain when they realized he was a former illegal drug user, so I would dress up, act professionally, and accompany him to the doctor to show he was loved and respected by his family. It helped.
In many situations in life, you need to dress for the part, hold your head up high, look them in the eye, and pretend you know what you are doing. They are probably pretending as well. It helps to carry a clipboard/iPhone/iPad because everybody important does that.
To be continued…
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