What’s on my mind? | Dear Diane

by Elouise

I just found this short piece plus two others Diane sent me via email. I’m adding them to my Dear Diane collection. For those who are new: Diane, my Sister #3, died of ALS in 2006. She wrote a number of pieces like this. Enjoy!

What’s on my mind?

It may seem obvious that I must spend much of my time contemplating deep thoughts. But I don’t think that way. My thoughts, as always, often involve tasks I’ve mapped out for myself. I was the busy person everyone looks for when they want to get a job done. The new twist is figuring out how best to entice others to do what I view as simple tasks just begging action. What was once my list is now divvied up among willing friends or not so willing family members.

But what about the hours when the lists are done, I have no excuse to e-shop, I’ve had my fill of surfing (the web, that is), and I can’t color correct and label more slides until someone helps me scan them? And what about the approximately eight hours a day away from the computer while the nurses work on my body?

I sometimes contemplate the enormous impact of ALS on my relationships. More often I mentally savor good memories from before and after ALS. Seems most of the “after” ones are humorous, often risqué. A favorite, and clearly the most daring, is mooning my free spirited hairdresser friend in her shop! (I simply asked my nurse to move me up in my chair while K waited behind me—in perfect position for the optimum view as my nurse leaned me over to push back each hip and thigh in my split down the back dress.) I now admit it was well planned, even what dress would work best. When these moments replay in my mind, I can’t suppress the grin. My poker face is history.

Perhaps those moments are important to me because they defy the image of a terminally ill person. I think my friends see a familiar flash of the “old Diane.” Too few understand that it’s not just a flashback. It’s who I am.

June 2000

Dear Diane,
I’m devastated that I wasn’t there to see the infamous mooning! I did, though, have a good laugh about those “simple tasks just begging  action.” Here’s one that blew me away then and still does.

When I got to Houston in January 2006, you had already been on comfort care for well over a month. That meant no nutrition and no meds, except as needed for comfort. You had decided it was time to go. But before you left, you were determined to get just a few “simple tasks” done.

By now you’ve been totally confined to your bed for months. You have no access to the computer, no easy way of giving directions for others to follow. No problem! You’ll spell it out! The entire kitchen needs to be re-organized before you’re gone. It will make things easier for everyone, and take a load off your mind. Dinners brought in by congregation members will end when you’re gone. It’s important to have the kitchen organized for cooking, not just reheating in the microwave.

Your kitchen was at least twice the size of mine. I don’t know exactly how you got it done, but I do remember my jaw dropping when I heard what you were doing. I’d give almost anything for a home video of this entire production. It would have three components:

  • Head-to-toe review of every cupboard, drawer, and shelf. Trust Diane’s judgment.
  • Instructions from Diane to be followed in their entirety. Trust and obey Diane’s directions.
  • No letting up until we’re done. Diane gets to say when we’re done.

I keep thinking of that stand-off between you and our parents. You were in a high chair and wouldn’t finish your meal. Definitely a foreshadowing of the kind of woman you were already becoming. Clear, patient and in charge. Only you would decide when the stand-off was over.

The last months of your life weren’t fun. Yet I smile when I think about the kitchen reorganization. Or a few other choice out-of-the-box things you did. Your spirit was free to be you long before ALS came along. All ALS did was to underscore and heighten just how free you had become.

Love and hugs,