Last month I was asked the question, "how is your health?"
It was 8:00pm and the day had been exhausting. In my head I was thinking, "what do you mean, 'how is my health?' I have amyotrophic lateral sclerosis for crying out loud!" And so crying out loud is just what I did. I burst into tears.
Last Saturday Marcie was in town and stopped by to visit. She lives much too far away and these visits don't happen enough so I was looking forward to her coming. A few minutes into the conversation I burst into tears again. (If you know me, you'll know that I hate crying publicly because I don't possess the talent to talk and cry at the same time. It is one or the other.) After I was done I requested that she ask me some more questions so that could try and figure out what triggers the tears. It would be nice for people to ask away, and for me to reply in a matter of fact way.
Right now let's practice a Q & A session:
Q: How is your health?
A: It stinks.
Q: Could you be more specific?
A: Sure. My right thumb is close to useless and my left thumb is starting to be a follower. Typing all of this is a slow and clumsy process. Today for the first time I wore my right leg brace in addition to my left leg brace. I hated how much easier it made walking. My arms are fatigued after brushing teeth and flossing. Lifting a large glass filled to the top is a two hand job. I now notice that there is effort involved when I transition from a sitting to a standing position. A gallon of milk is so so heavy.
Q: Did you really have fun in Mazatlan?
A: Yes I did. But I was not looking forward to it for the longest time. Thinking about being surrounded by healthy bodies on the beach was depressing. Once there, yes, people were flaunting their strong and healthy bodies left and right. They were playing ultimate frisbee, boogie boarding, and going for runs on the beach. If I wanted to go in the water deeper than my shins I had to hold onto Jeff's arm so that the waves wouldn't knock me over. Despite that, 80 degree weather was lovely, the sand was warm, and the Mexico trip was worth it. Plus everyday I had cute hair in a ponytail, or braid, or bun thanks to 2 of my sister-in-laws. Thank you Kim and Erin!
Q: Who does the grocery shopping?
A: Jeff does. (btw do you have any idea how much I love that man!) I did attempt grocery shopping this past Tuesday, just to pick up a few random items. Erik and Claire were with me. They helped push the cart around, load the food onto the check stand, and bring all the groceries into the house when we got home. When I related this story to Jeff he asked if I used my close parking pass. The answer was no.
Q: Do you ever use the "close parking pass"?
A: Okay fine, call it the handicap pass or whatever. Jeff has used it twice for church. His reason being that he didn't want to park far away and carry the church bag, and herd 3 kids, and help me over icy spots in the parking lot. So now we park close. The first time he used it, I was quite angry with him (my pride) and wanted to say something mean. But didn't because I love him.
Q: One more question.
A: I'm just about done here.
Q: In previous blog posts you've mentioned "constant fassiculations." What do you mean?
A: The subtle muscle twitches...if I've just finished doing something somewhat active and sit down I feel a twitch here and there and all over. A conservative guess would be 60 per minute.
That is enough questions for now.