Wednesday, August 20, 2014

When - from Luther


My mind had really been wandering lately and I'm not sure why. It could be the vital explosion of the ALS ice bucket challenge. You can't look at Facebook without seeing someone taking the challenge and raising awareness for this awful disease. I'll admit that before I was diagnosed I didn't know anything about the disease except that it existed. I know more now than I really want to but such is life.

These are some of the thoughts that have been weaving there way in and out of my brain the last couple of weeks.

When will I no longer be able to feed myself it is getting harder and harder to lift my hand to my mouth. We went to dinner tonight and I could barely reach into the basket to get a chip and dip it in the salsa. I've got the feeding tube in already but I'll miss the taste of food.

When will my legs quit working. I can still maneuver around my living area, get in and out of bed and take myself to the bathroom (thank goodness for the bidet). The time is coming when someone will have to put me in bed, get me out of bed and take me to the bathroom. This brings up the question of when do you start wearing diapers, I really don't even want to think about this. It also means that someone will decide when I go to bed and when I get up.

When will I no longer be able to hold my head up. I find myself sitting in my recliner and will be tilted to one side or the other without me even realizing it had happened.

When will I no longer be able to talk. My voice is good now but I know it will go. Should Lynn and I develop our own language. I have a vision of sounding like a wooky, imagine taking without moving your tongue.

When will I stop breathing. I've pretty sure that I don't want to be vented but never say never. I think the toll that having to maintain the vent would be significant.

When will I die. I think I've got time left right now but there is nothing typical with this disease. Any of my whens could happen tomorrow, next week, next month or next year. I just know they are coming but I don't when or in which order.

I've accepted the fact that I'm going to die much sooner than I'd ever thought about.

I'm not going to sit and wait for when. I know it's coming but it didn't make an appointment so it will just have to catch up with me. 

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