Deer in a Spot Light
Thursday, August 27th, 2009
On Tuesday we hosted the ALS Association Bay Area Chapter fund raising luncheon. This event sort of snuck up on our little household. We only collectively realized this was actually happening a week before. The fairy garden was awash in dry Bishop’s Lace and the “lawn” was a bit frayed around the edges. The party was a good excuse for us to overhaul the untended spots. Mattie forked up the dough, and we bedecked the fairy garden in brand new perennials; Chocolate Cosmos, Dianthus and Coreopsis, to name a few. Even the abandoned succulent garden got a face lift.

I thought before hand that I would be fine with this event. Seth unearthed his hoard, and bedecked the garden in fairy stones. He wore his shirt that I painted with Grandma Belle when I was six. We both gave our little speech about how mom was an artist, and her legacy lives on in us. However, when it was time to leave for the park I felt relieved.
I don’t seem to relate my mother’s ALS experience and death with her. I remember and cherish all my memories of her, but when forced to confront ALS I skirt the issue. I can’t even get my brain to concentrate on it. When you tell people that you mother died of ALS, you might as well have turned a search light on a deer. ALS is currently an incurable disease with only one outcome. As humans we survive by not dwelling on the unpleasant and unfixable. It is easy to be a cheerleader for cancer because lots of people survive it. No one survives ALS. That said, I really admire the staff of the ALS Association. I think they have one of the hardest jobs/life experiences, yet they were all so confident and professional.

Although the event was filled with faces and people, I couldn’t help but notice the empty chairs. Every time I noticed an empty chair I envisioned my mother sitting in it. I saw her reading, cutting with scissors, dialing a telephone. I saw her doing all the subtle quiet activities that make up most of our lives. The nature of ALS is subtle. Although each transitional stage of ALS has it’s drama, the disease forces subtlety on everyone. Days become slow and quiet, and those giving care are forced to listen more closely for the slightest movement that signals a need of their loved one.
Our garden rejuvenation, although cheery reminded me nothing of ALS. I left feeling that our efforts had no connection to the event. I have no regrets, I’m sure that everyone thought it looked lovely. However, next year I will have a much better idea of how to reconnect with my experience of ALS.





























