23 July

Testing Time: Carol Gulley: Crying Inward

by Jon Katz
The Testing Time: Carol Gulley. A brief nap with Ophelia.

Carol Gulley is a friend of mine, and there are two things about her that never change and will not, I think, ever change. One is that she will never ask for help. She could be hanging off the edge of a sinking ocean liner and she would not call out for help or feel she deserves any help ahead of anyone else on the boat.

You can ask Carol a million times if you can help and she will always shrug and look puzzled and say, “no, I’m fine.” So what you do is simply help and never ask.

I asked her for days if it would help if I came by every afternoon, and she said Gosh no, that would be asking too much.

So I just come by every afternoon, and she is clearly grateful for the rest and chance to do her chores.

The other thing that never changes is that when you ask her how she is, she is always quick to give the same answer: “fine. How are  you?” Carol has a great heart but a will of granite. She does not bend or break, and her answer does not necessarily have any even slight bearing on the truth.

You have to remember that i met Carol in cardiac rehab and we open heart surgery people know each other in a particular way. We have an aversion to bullshit.

But  still….She is in an awful testing time, in a lapse she will call it a “terrible time.”

Today, the results of her MRI came in, and she learned she has torn ligaments in her left leg.

She was limping so badly today I did not think she would be able to stand up. She is a farm girl, though, of course she was able to stand up.

Her face is lined with sadness and exhaustion and now, pain, when she least needed it in her whole life. Carol twisted her leg on ice during the winter and like any farm girl, soldiered on. It has come back to haunt her, she has been hobbling the last two weeks and finally got to a doctor. She will see a orthopedist later this week to see if she needs an operation.

Torn ligaments very often do require surgery.

Ed Today

Carol is already bearing a heavy load, as most of you know.

It just got a lot heavier. It is painful to see her limp so badly.

Carol never sleeps more than an hour or two a night,  especially now that the nights are fearful and painful for Ed.

She shuffles back  and forth from Ed’s bed to the rest of the house all day and night. She gives Ed his medications, adjusts the sheets, wipes his brow, moves the sheets, and feeds him his chocolate ice cream. She brings him water, takes his blood sugar, talks to him, kisses him, listens to him in the increasingly rare moments when he can speak.

Her leg has added an enormous complication for her, I imagine she will do almost anything imaginable to avoid having surgery now, even if she can barely walk.

She will let her children help her, but I do not think she will turn Ed’s care over to anyone for more than a few minutes.

She hasn’t yet. She has not yet written a word on her blog about the pain she is in.

Today, I came in the afternoon to sit with Ed and bring Carol and her family sweet corn right out of the field, big fat sweet peaches from Pennsylvania, green beans and a big and beautiful pot of zinnias – the Gulley farmhouse could use a bit of color, I think.

Carol came to sit with me (and Ed,) and I asked if she would she like to sleep, and she said, no, she was fine, and so I said, Carol go and lie down and sleep a bit.

And she said thanks, don’t mind if I do, and lay down in the lift chair. Ophelia popped up to sit with her, and Carol was out in an instant.

It was a lovely 10 minutes, I didn’t dare move for fear of waking her up.

Then, Ed sighed and rolled over a bit, and Carol was wide awake, she got up to shift the blankets on him and ask if he needed anything. Ed looked at me and I said hello, and he said hello, and then fell back into the deep sleep he is now in for almost all of the day.

Carol did not go back to sleep.

Each day Ed looks thinner and weaker and almost all of his spirit and drive is gone. Every day, Carol looks more worn and sadder, the two converging steadily towards one another in a sad but inevitable place.

I am not worried about Ed now, he is, in most ways, already gone, there is not much more to do or say. My wish for him is a swift and peaceful end. He is in more pain now than before as the cancer moves through is body and takes it over. Somebody said once this kind of cancer is like an octopus, it simply envelopes a person.

But I am worried about Carol. Today, she told me the hospice aide, a temp filling in for their  regular aide,  got up and left the room when Ed started to cry out in pain. “I can’t handle this,” she said, and went into the kitchen.

Carol was stunned, and angry. I have never seen a hospice aid do that, and I hope Carol never sees it again. I Carol can handle it, she certainly can.

When it was time for me to go home, I stood up and said “Carol I have to go now,” and she said, “of course, you are doing too much.” You should talk, I thought but I said nothing but “I’ll see you tomorrow.”

I do notice all of the corn I bring is gone by the next day, and so are the peaches and blueberries. That is good to know. I have this feeling that fresh fruit will be healing for everyone, and don’t ask me why.

So this is the testing time, and the hard and lonely and grounding time for Carol. She is, of course, surrounded by a very loving and protective family, they are always close by. It is not a question of whether she can survive, but how she will endure.

At first, as awful as it sounds, there is much excitement, adrenaline, energy. it gets old very quickly.

For all the people in Ed’s life, this really comes down to a love story. Carol and Ed.

It is  something so personal and intense that it is sometimes unbearable to look at it. And it is relentless and draining.

I’ve been marking passages in a book for Carol, today’s was “Cry Inward,” a passage from Henry Nouwen’s book “The Inner Voice of Love.” I’ve been reading quotations from the book to Ed.

I thought of her while reading it right next to her as she slept.

“You have to move gradually from crying outward – crying out for people who you think can fulfill your needs – to crying inward to the place where you can let  yourself be held and carried by God, who has become incarnate in the humanity of those who love you…”

Carol is crying inward, every day, I can see it and I can feel it. And I cannot and should not try to do much about it.

I wish her strength and one day, peace.

1 Comments

  1. This was beautiful Jon. I think of Carol daily (and Ed of course) and I pray for peace for her. I’m glad you are there for them. And fresh fruits and veggies would be an elixir for me. What a nice thing that you bring those things. Blessings.

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