Feeling Like A Child Again

ALS is starting to suck the life out of my muscles.

As this disease progresses and I get weaker, my family and friends seem to gracefully accept and adapt to my needs. In fact, it is getting easier to let someone take me to the bathroom or feed me a meal in a restaurant.

Sometimes I can relate to being a child again when someone has to feed me or wash my hands and fingers after I’ve tried to feed myself. My arms feel so heavy when I try to lift my arms to my mouth that eating can be exhausting. When I try to pick up a pill to put it into my mouth I often drop the pill because my fingers are no longer coordinated. I can relate to how a baby must feel when trying to pick up a Cheerio from their highchair tray. Gloves are also really difficult for me because my fingers no longer cooperate finding the finger holes, but my friend Colleen Paquin bought me a pair of warm fuzzy mittens, which are much easier.

I feel like a child learning to walk for the first time. I no longer walk without someone holding onto me. When I walk I have to look down at the floor to watch every step for fear I may trip or step onto something that will cause me to fall. I used to have excellent balance but it is gone.

Mark tried to help me blow my nose last week and it didn’t go so well the first time because as I inhaled, the bottom half of the tissue surrounded my mouth causing me to gasp for air.  We laughed, but we’ve been practicing and are getting better at this new task.

I may be losing use of my muscles but I’m gaining in so many other ways. I’m learning to really appreciate the things I am still able to do and  I’m awed by the love that goes into helping me with my daily tasks. Last night Mark said to me, “Rosemary, taking care of you is the most important job I’ve ever had.”

How can I feel sorry for myself when I have so much?