“Stop to Smell the Roses”

Koi has the right idea!

         I took for granted the little pleasures of life. Don’t we all? Before my mother’s disease invaded our daily routine, I spent hours out in the back yard watering the flowers. I’d sit with journal and pen or the latest best seller and piddle endlessly on my tree swing. I’d chat with my neighbors for half an hour or more by the mailbox or over the fence. I could jump into the car whenever I wanted, run to the store or a mall, or grab a bite to eat. In the evenings, I’d watch television, listen to music, or talk on the phone with friends without a single interruption. If a friend called and invited me out, I didn’t think twice about heading out the door. If someone dropped in unexpectedly, I knew I could have a block of time to visit without stopping to see to someone else’s needs.

         Huntington’s Disease robs the entire family of so many little pleasures. We are now my mother’s legs and often her hands. She’s still able to feed herself, but pulling the covers up when she’s chilled at night or fixing her pillow “just right” challenges her now. Taking a walk around the block requires a major pep rally to innervate Mom into the desire to leave the house. Her weekly trips to favorite restaurants have diminished to a once-a-month outing. If she doesn’t feel up to strain of a car trip, she may forego the excursion and opt for us to bring take-out to her. Recently, we’ve seen more personality changes in Mom. When her insomnia hits, she angers easily. During these endless nights, if one of us doesn’t use a cheerful tone of voice with a smile on our face, she’ll go into a tirade about us “neglecting” her even though we’ve stayed up with her hour after hour. Her brain, desperate for rest, misfires into obsessive compulsive actions, paranoia, and pure meanness. I refuse to feel guilty because I’ve lost my temper at two in the morning and yelled at my mother to go to sleep.       

         During the last three years I taught, I often went into tirades at misbehaving students. Sometimes, I may have “acted” with more anger than I really felt, but I’ll admit that my temper flared frequently. Since I’ve left that horrible teaching situation, I’ve regained my sense of balance. I rarely lose my temper. On days where Mom’s needs seem endless, I mutter “patience, patience, patience” and I remind myself that it’s easier to be selfless for someone you love.

I find myself resenting the loss of my time—and my freedom to do what I want, when I want. I do not resent my mother, but I hate the disease that takes, and takes, and takes. So some days I try to venture out into my gardens, and I take a moment to appreciate the beauty and little pleasures so HD doesn't win.

One rose out back

Copyright 2012 Elizabeth Abrams Chapman