Jane, get me off this crazy thing!

I remember the teacup ride at Disney World so vividly. I sat with my sisters in this over-sized porcelain cup eagerly waiting for the ride to begin. As the platform spun around we were thrown together to one side of the cup on our perilous journey. And, as if that wasn’t enough, you could spin the cup itself at the same time the platform spun you around. We giggled as we turned the wheel and flung to and fro, and laughed even harder when we tried to exit the ride dizzy and winded.

As much as I enjoyed that ride as a little girl, I would not dare to go on such a ride now and lately I feel like I’ve been riding that teacup ride, against my will. The back and forth of ALS can live you feeling dizzy and disoriented.

We have limited care for my husband so on Sundays I care for him and my four-year-old son alone. This past Sunday I woke up before anyone else feeling good. I had visions of making coffee and reading my book for twenty minutes before the day started. The coffee had just finished brewing and my husband woke up. He is bed-bound at this point so I went through our usual routine, still hopeful that I would have a few minutes to sit with him before our son woke up. I don’t know how kids do it, but as soon as my butt hit the chair my son started calling for me and thus the teacup ride began.

I attempted to salvage the day by getting my son and I around for church, but in the process my husband had to use the commode. This adds an additional thirty minutes to whatever we are doing, but I got it done and then got my son and I fed, dressed and out the door for church for an hour of sitting quietly in a pew. My bliss. Back at home the scene repeated itself with my husband needing to use the commode again and nap-time for my son being delayed. Finally my son fell asleep and I had another hour of peace and was finally able to open my book and read. However, the peace ended abruptly as everyone woke back up and then I was on to dinner, and lunches for school and work,  while trying to balance the demands of the two men in my life. The teacup was spinning again.

Riding the teacup on days like this I often end up feeling angry and discouraged. The thrill of being whirled around by an outside force is not joyful, but instead leaves me feeling helpless and alone. As a child I surrendered to the moment, but as an adult I feel frustrated that I can’t choose how I spend my time and feel robbed of moments I can’t claim. Through meditation I have learned to simply accept what is happening in the moment, but when the teacup is spinning it’s hard to step back and be willing to relinquish control. I wonder if I can I learn to surrender even to the teacup ride of ALS? The reality is I’m on the ride either way so I may as well find a way to enjoy what I can.

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