Your description of life after you got a vent is beyond painful. I wonder what would happen if this letter—this epistle from Diane—were read from the pulpit in church this Sunday? Or any Sunday? Read the rest of this entry »
This is the last piece Diane wrote for her friends about ALS. I’ll respond next Friday. It’s a longer piece, definitely tough reading. Partly because it’s about her; mostly because it’s about us. Read the rest of this entry »
Is there anything ‘normal’ about ALS? If so, I haven’t yet discovered it. That’s ironic, since life itself is fraught with unexpected events, twists and turns. Yet we call it ‘normal.’ Why not ALS, too?
I learned early how to answer the inevitable question of my heart: Why me? Why my family? Read the rest of this entry »
It’s April 2011
Diane is in my dreams—
tall, beautiful
wearing a long, full
light mocha winter coat
that’s gently flared
in the back.
I see her
from the back,
looking over her left shoulder,
smiling at me. Read the rest of this entry »
Diane’s opening lines in Part 1 are loaded: “I am dying. Sooner rather than later.” Her entire piece is available here. The following letter is my response to her.
Dear Diane,
Your question and opening lines get right to the point.
I’ve been thinking about our family of origin and your immediate family. From my perspective, they’re light-years apart when it comes to talking in general.
For example, I can’t imagine us as children sitting around the kitchen or dinner table, chomping down food, elbows on the table, Read the rest of this entry »
Houston, March 1999. A small family gathering in memory of Mother’s death in February. Several next-generation cousins are there. We watch a video of the memorial service for Mother. Death is in the air and on my mind. Not simply Mother’s death, but Diane’s and mine. Did Diane’s ALS break Mother’s heart? Read the rest of this entry »
Continued from Part 1. “…I do need to express, however, a part of my experience as a woman in ministry about which I have remained silent.” Read the rest of this entry »
April 1999, Houston. Diane is now on a ventilator—her last major adjustment. Every day and night I hear the sound of air pumping in, out, in, out. Sometimes an alarm goes off to signal something isn’t working quite right. Diane is surrounded by a growing assortment of machines, pillows and sheepskin padding, carts filled with personal and healthcare items, plus tubes and electrical cords.
Is it worth it? Read the rest of this entry »
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. Read the rest of this entry »
⇒ See Part 1 of this sermon: Herr K and Jesus.
Diane
It’s 2002. I’ve been going to Houston 4 times a year for more than six years to visit one of my three sisters. Diane has been learning to live with ALS. It has relentlessly stolen her ability to move, swallow, speak and breathe on her own.
Since 1999 Diane has lived without any of these abilities, with the exception of making small facial movements. They’re her communication lifeline to the world.
For the first time in my visits, Diane can’t use electronic means of communication. Everything has to be spelled out—letter by letter, using a numbering system linked to letters of the alphabet.
Diane is looking for learners. She needs family members and friends willing to take upon themselves a yoke of learning.
Diane winks her left eye twice, signaling her desire to say something to me. Each row of letters begins with a vowel. I start down the vowels. But there’s a catch. I can’t just say A, E, I, O, U. Instead, I have to use numbers as a code—1 for A, 2 for E , 3 for I, 4 for O, 5 for U, 6 for numbers. 1…2…3…4… Diane raises her left eyebrow ever so slightly to let me know I’m in the vicinity of the right letter.
I shift gears and start going down the O road of the alphabet: O… P… Q… R… Diane raises her left eyebrow ever so slightly. The first letter of the first word is R! I can’t go too fast, or she won’t have time to make her eyebrow go up. We return to the beginning and start on the second letter. Eventually, when all goes well, either I intuit the word correctly, or she signals the end of the word by staring straight ahead.
Sometimes I get lost. I forget that 3 stands for I, not E! I forget where we were in the communication. Sometimes Diane starts over with different words, because I’m not getting her verbal shorthand.
Sometimes my wonderful intuition becomes my worst enemy. I think I know what Diane is trying to say. I’m willing to start over and be corrected, but my expectations are still in my mind, wreaking havoc with my ability to get on track with Diane. My anxiety level escalates. So does hers. It becomes more and more difficult to concentrate.
Suddenly, in the middle of one of these frustrating encounters, I get it! I understand Jesus’ yoke of learning. I never understood how it could be easy or light. But now I get it!
If Diane and I are going to get anywhere together, I will have to come to Diane as a learner, not as the teacher. It looks like this:
If I can’t learn from Diane in this way, I’ll never come to rest in what she wants to communicate to me. And the burden and loneliness will be heavier than either of us can possibly bear.
You and Me
Three teachers, each looking for learners: Herr K, Jesus Christ, Diane. Looking for learners willing to die; willing to ask for help; willing to make mistakes and pick themselves up; willing to identify with those who are sometimes forsaken.
Time is running out.
About 20 years ago Diane, wife of Clay and mother of three children, graduated from seminary. Within a few years she was called to be Minister of Christian Education, and then Minister of Administration and Christian Education at a large church in Texas. Bright, articulate, gifted and called. In her late 30s.
Only seven years later, in 1996, she resigned her position so she could learn to live and die. Diane was a lifelong learner. Her life ended this past February, 10 years after she was diagnosed with ALS.
How much time do I think God has given me? In truth, I have only this present moment. Sometimes I behave as though my days were numberless. I’m still young. What’s the rush?
Jesus is looking for learners. People willing to learn how to live and how to die daily. People like you and me, ready to take his yoke of learning upon us so we can find rest for our souls, our bodies, our minds, our emotions.
I’d like to close with a short reading that encourages me to persevere. Especially when I feel lost and alone, disoriented, off-balance and dismayed.
Oswald Chambers is commenting on Mark 10:32, “… those who followed were afraid.” Jesus is on his way to Jerusalem—where he knows he will die. Alone.
At the beginning we were sure we knew all about Jesus Christ, it was a delight to sell all and to fling ourselves out in a hardihood of love; but now we are not quite so sure. Jesus is on in front and He looks strange: ‘Jesus leading the way, and the disciples were astonished.’
There is an aspect of Jesus that chills the heart of a disciple to the core and makes the whole spiritual life gasp for breath. This strange Being with His face ‘set…like a flint’ and His striding determination, strikes terror into me. He is no longer Counselor and Comrade, He is taken up with a point of view I know nothing about, and I am amazed at Him. At first I was confident that I understood him, but now I am not so sure. I begin to realize there is a distance between Jesus Christ and me; I can no longer be familiar with Him. He is ahead of me and He never turns round; I have no idea where He is going, and the goal has become strangely far off.
Jesus had to fathom every sin and every sorrow [human beings] could experience, and that is what makes Him seem strange. When we see him in this aspect we do not know Him, we do not recognize one feature of His life, and we do not know how to begin to follow Him. He is on in front, a Leader Who is very strange, and we have no comradeship with Him.
The discipline of dismay is essential in the life of discipleship. The danger is to get back to a little fire of our own and kindle enthusiasm at it…. When the darkness of dismay comes, endure until it is over, because out of it will come that following of Jesus which is an unspeakable joy.
Oswald Chambers, My Utmost for His Highest, March 15 – The Discipline of Dismay.
May God grant us courage for the hard work of learning to live, and the harder work of learning to die.
© Elouise Renich Fraser, 24 October 2014
Telling the Truth 