#35, July 9, 2015, All Tied Up

This is the next in a series of transcripts from my journal, written during the last year of Dave's life.

 I am tied to Dave’s health condition and attitude on any given day and don’t know how to get untied without loving less at the same time. I want to love him and empathize, but don’t know how to do it without sinking down with him on the days he feels so sick and discouraged. 

His illness is not a straight line. Some days, he smiles even in weakness and some he can barely raise his eyes above the rim of his dizziness and weakness. I can’t make any of it go away. I can’t protect him. I can, however, walk with him, witness to his weariness and discomfort. I can show him that I will be here no matter what even when we are both afraid.

So, yesterday, when Knute came over and asked me how Dave was doing, I just cried. He, Dave, was so discouraged, so weak and tired of being sick. Then later, he took a nap, went to rehab, and was better. That’s when I got it. The minute he felt better, I did too.

That’s OK up to a point, but doesn’t include much trust in God. Somehow, it has to be possible to enter completely in while still trusting that God will be holding me. And He will. I know it. This is way past any of my own ability to lift myself out of it. I have to enter in, resting in God, and let Him hold me up.

#33, July 6, 2015, Pain

 

This is the next in a series of transcripts from my journal, written during the last year of Dave's life.

 If I allow myself to love, I am without defense. 

If I allow myself to love, I will be undone. 

I will faint and wail and know pain to my very core. I am starting to feel it already, in moments like hot lightening, like cruel killing explosions that blot out everything else but blinding pain. 

If I let myself love, I feel like I will not survive this.

Image: SCI Total Fitness

#32, July 3, 2105, Smelling Breakfast

Sitting in bed thinking about what it was like at Kathy's to smell breakfast cooking before I got up—the luxury of someone else doing something warm and delicious while I lay in, snug and still. I never thought that there would ever come a place when I would yearn for that—someone to take care of me in that distant intimacy. Now, if it comes ever again, it will undoubtedly be in some nursing home where I’ll have to share a room with another old lady, undoubtedly someone who snores and farts like an old dog. I like this better, I think.

Today is full of have-tos: cats, breakfast for Dave, Knute, and Bryan (my fault—it’s the only thing I know how to do and Bryan asked for biscuits and gravy), Dave to PT, some kind of supper. As easy as these are, I am not mustering any want-tos.

Instead, these days are perfect—sunny and 70’s. I want to be in this day. Maybe I’ll pick some of the easy blackcaps and make something sweet with them.

Trying to reach for something I want to, not what I have to, and can’t quite get my hand around it. But then, Dave must be sick, Bryan must be alone, Jean must drive to see us, Audrey must wake up without John again. The musts form life, I guess. The wants are only frosting. They’ll make me sick if I have too much.

#31, June 30, 2015, The Breathing

The last day of June. Cool nights, warm days. Gentle. Beautiful.

Just spent a couple of days at Kathy’s in Milwaukee and on the first morning, fell on my knees in gratitude without completely knowing why. But it had something to do with the lifting of illness and of worry and of responsibility while knowing Dave was safe. And as I lay in bed yesterday, listening to him cough—he coughs so much now—I think about how he gets no break from it. I have the physical care of him, but he has the disease. He never gets to take a free, unburdened breath.

This is what I want—to find the beauty among all of this—the promise and the poem. It has to be here somewhere. Breath is not life, but in the breathing, in the beating of our hearts, life rises.

Image: from Motor Impairment

#30, June 25, 2015, Where to Stand

For my own sanity, I have to admit that I am suffering—and not able to appreciate every day the privilege of caring for Dave. There is frustration, too—the disappointment of lost abilities and canceled plans, the contradiction of how he looks and sounds with what he says, the weariness of all that needs to be done.

I am almost always tired. I would like to say that it is not the sacrifice that wearies me, but sometimes it is. Bryan is coming home this weekend so I can go to Milwaukee and that much is good, but there is anxiety in being away, too. 

I want it to be over.

I want him back healthy.

I will not get what I want.

So what is the purpose of this place? I am in school—God’s school. I am learning empathy, obedience, patience, unselfishness. I am learning to seek pleasure in and hope for what is promised rather than what is happening. This is my training. This is my war. I did not earn it, but it is given me for my betterment by God. If I am to succeed, I must find firm purchase in Him alone.

#29, June 22, 2015, Aiming to Soar

Second day of summer. Dreamed about getting a job in the courthouse, woke with the excitement of it. But that, of course, is not possible.

Read about the holiness of subjecting ourselves to one another—how God is both training and restraining me.

Dave dreams almost every night and likes to go for drives to look at the lush countryside. It is life for him. The green hills fill him with delight.

Maybe I will start to take him to rehab. It seems like he is getting weaker—eating less and losing vitality again. Like his body sinks. Would like to see his spirit, at least, soar. I wonder if I can help him?

Image: Chapman Cultural Center

#28, June 21, 2015, Not Amused

So here we are, at the longest days of the year, and I want to taste the loveliness of life, and lean into it, and be wrapped in it. Instead, I feel beset by trouble.

The whole cat thing still bothers me and I don’t know why. Then this weekend, Bryan came home to treat Dave to two things he wanted to do—a concert and a good French dinner—and Dave was too ill to do either of them. 

Feeling trapped by unchangeable circumstance. People crowd in and I’m feeling like I need to be alone. I’ve often said that to love God is to accept what comes my way as OK. Not doing so well at that just now. 

Oddly, I do best when nothing presses—no visitors, no holidays, no outside commitments. These days, even when they bring hardship, go more smoothly. They don’t ask more than I can give. Add one more thing, one more hard or unexpected need or requirement, and I am dismantled.

So am I reacting wrong in design or implementation? In implementation, without doubt. I don’t trust after all. Circumstances still drive me over the top, steal my peace. I feel undone.

Today is Sunday and as I read my Bible and pray it, as I study a book about monastic culture, I realize a couple of things. First, that monks made no apology for seeking eternal meanings in everything they did or read. I have been mocked for this, thought too high and mighty that I couldn’t or didn’t want to enjoy a large dose of simple entertainment. 

But, and the 2^nd thing—I’m wondering whether my current unease results from reading a good but not eternally significant Stephen King book and, at the same time, passing odd chunks of time playing a computer game. This morning, as I settle into serious reading, the knot in my stomach loosens and rattled nerves soothe a bit. Maybe I am not made to be amused.

Image: PinCaption