A Matter of Trust | Dear Diane
Houston Journal, 19 June 1998: Every time I come Diane is a little less alive in her bodily functions. This time feels very heavy—the hospital bed feels like the beginning of the end. On the TV today they were talking about an ALS cure by 2000. I don’t think Diane will make it that long.
So much for my forecasting. Diane lived until 2006.
During this June visit I witnessed the episode Diane describes below. Yes, I made notes about it in my journal. Diane kept notes in her head, waiting to download them to the computer. You’ll see, given the length and complexity of the piece, that she’s able to write again, thanks to electronic wizardry and the patient work of several angels. The piece is about Diane and her husband Clay.
A Matter of Trust
We have established a system for spelling out the words I can no longer articulate when I’m away from my computer. We divided the alphabet into five ‘rows,’ each beginning with a vowel. My conversation counterpart counts down the row and I indicate the correct one. They then recite the letters in that row watching for my eye to signal they have reached the correct letter. With very little practice, the rows are memorized. Laborious, but reliable. Right? Read on.
One, two, three . . . W-R-I-
Hold on. I need to get something to write this down. Okay, W-R-I-.
One, two, three, four, five, six – What’s the matter? Isn’t W-R-I- right?
Should I keep spelling? All right then.
One, two, three . . . –T-E. Write?
You want me to write this down? I am writing this down!
What do you think I was . . . Oh, that’s right! I wasn’t to start with.
This ‘dialog’ ended with resolution. Too often these Burns & Allen routines remain in tension.
One, two, three . . . L-O-O-K –Look?
ON THE (With a few repeats I was able to convey these two words verbally.)
One, two, three . . . P-R-I-N-T –Print? No? More letters?
One, two . . . -E-R –Printer? What about the printer?
(I have no doubt that my agitation and disgust were not concealed.)
I’m not getting it. I’m sorry, I can’t understand you. You want me to spell again?
One, two, three . . . L-O-O-K –Look? Printer look? What does that mean?
Is something wrong with the printer? You want me to look at it?
I was quite unglued at this point. Somehow Clay eventually understood he needed to “look on the printer” and found the information I had printed for my eye exam the next morning. I don’t think Clay ever realized he forgot the first three words of the sentence. He was irritated with me for expecting him to read my mind, for giving up and crying when he was desperately trying to understand. I was more than a little p.o.’d that he was too tired to think straight, that he thought somehow this mess was my fault.
For someone who has always been an articulate communicator these episodes are maddening. I can be comfortable with disagreement and I can accept being wrong (though it is rarely necessary!); but I don’t sleep well if I have been misunderstood by someone important to me. I have always been sensitive to interaction needing clarification whether I am participant or observer.
ALS has certainly multiplied my opportunities to be misunderstood in recent weeks. When Clay and I first began encountering these communication dead-ends I felt compelled to clarify all my words and the feelings behind my behavior. Those attempts required time and energy neither of us had. I now realize that with Clay it isn’t necessary.
I am confident of his continuing love even if he does think I have responded to him unfairly or unkindly. Likewise, I trust he knows that my love for him does not depend on his ability to meet all my needs. We have invested years of trust in our marriage. It’s time to relax and enjoy our return.
I remember this interchange with Clay. I couldn’t help thinking of David and me, and what life would be like if he were my primary caregiver, and we and our family were up against a relentless disease like ALS.
Your comments about being sensitive to interaction needing clarification remind me of the meeting with our parents in 1993. You and David were my witnesses, under strict orders not to speak on my behalf (or I would stop you!).
During one tense interchange, our father kept insisting on interpreting me his way. You were sitting beside me. Suddenly you couldn’t take it any longer! You began trying to explain what I was saying. I reached over, put my hand on your arm, and told you thanks, but no thanks. You stopped immediately and went back into silent witness mode. No fun, I’m sure.
Every time I visited with you I witnessed the trust you and Clay had in each other. I also witnessed tense situations, and wondered how you could hold it together. Yet through it all, you and Clay played it by heart, without the notes and without a director.
Which reminds me — Bill Supplee has joined the heavenly choir. As have many of our friends and yours from Bible college days. Hold a space for me.
Love and hugs,
© Elouise Renich Fraser, 6 November 2014