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A Rule Book by Susan Catlett
A huge thank you to all for your encouraging words, thoughts, and prayers; it really helps to know you are all out there. Writing my Rule Book has been a fun exercise. It has given me lots to think about, mostly what is really important in life. I have a couple more rules, but that will leave me with 13 rules; who does 13 rules? You can do 10, 12, or 15, but not 13. Ummm, I wonder if there is a rule…?
Rule #11
Practice what to say when people ask how you are; don’t be caught off guard.
When I first got diagnosed, friends would call and ask Cliff how I was doing. He didn’t always know what to say because we were still trying to figure all of this out ourselves. At first, his response would be very, very sad, “She is doing as well as can be expected.” Listening to him was making me very sad, so we decided since I really feel good most of the time and just get tired, that is what he would say, “She is feeling good but a little tired.” This helped both of us.
Usually, I don’t mind sharing, but I have had a couple of negative experiences when people I didn’t know very well pushed me a little bit with their inquiries. I developed a set of answers I give when I am too tired, it is the wrong time, the wrong place, or the wrong person.
You know, I am an educator at heart, and I will, without much prompting, give more information about ALS than you would ever want to know. However, there are times when it is not easy or convenient to tell the whole story, even though I might be tempted. Please, don’t hesitate to ask me questions, in due time I will tell you everything you want to know. Until then, I will try to gauge how much you really want to hear.
Understandably, I think most people don’t really want the full story about this devastating disease. It is too depressing. It depresses me, and it is my story. What people do want is to show they care and are concerned, and they want to know that I am okay, which I am. I just can’t walk, and I have ALS. Other than that, I am okay and that is what I say.
To be continued with rules 12 and 13…
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