Debilitating, but not fatal

Is this the end of my regularity on Substack?

Happy Independence Day.

Parkinson’s disease, which my father has, won’t kill you. It can be utterly debilitating, but it won’t kill you. It’s just God’s way at the end of your life of, you know, pinning you down and screaming into your eyeballs, “repent! Repent! REPENT!”

It’s our last chance after all. Love doesn’t want to treat us this way but as a last resort it will. Mercy brought to its extremes often looks unrecognizable to us, but the lack of recognition is due to our own faulty perception. Parkinson’s disease, in my experience, is exactly this kind of extreme mercy. It is not pleasant. Only from a perspective either penitential or eschatological can it be understood as merciful.

My father has been living with this disease for about fifteen years, but has been functional and independent until just a couple years ago. I moved in with him at that time to help him maintain his life at a small cottage in the mountains. I’ve stayed in the guest apartment behind the garage. The past few months have been tough, but right now it’s worse than it’s ever been. The last two weeks he has finally had the deep brain stimulation (DBS) placement surgeries that he signed up for last fall. This involves threading wires down into your brain and connecting them, under your skin, to a battery installed in your chest. It’s like a pacemaker for your brain. You control it with a Samsung smartphone. I would never consent to this, but my dad’s a different person.

Now all the hardware’s in place, but it won’t be for a few weeks yet until they turn it on and start experimenting with the levels. How much it will help is unknown. One of my sisters is up here to help for the time being. She’s taken over the apartment where I normally live, work, and pray. I have no space to myself, not even to pray. Even if I get a little time here or there to do something, I have no space to do it in. The last couple weeks I’ve twice made the beginnings of an article but have had to abandon it. I don’t have the time, the space, the energy, or the mental strength. For eight months I’ve been blessed to work on this Substack, reliably posting something I’m not ashamed of once a week. I’m not nearly out of ideas for things to write about. My audience is growing. But it’s hard to see how I can continue as things currently stand. Not when my father requires the amount of attention that he does. Not when I’m trying still to be the chief editor at the Symbolic World blog (another source of trials and worry). Not when to perform my prayer rule I might be exiled into the woods on any given night because my family makes no room for God in their lives.

Thank God for the woods.

I feel so grateful to have been given the opportunity to write the things I’ve written here the last eight months. For how long have I been thinking about these topics? That scene from Blush, that Margaret Atwood aphorism, St. Maximus on the positive place of the passions, the chiastic relationship of soul and body, the way commercial art behaves like pharmaceuticals, what the Judeans represent in the Holy Week services, Arvo Pärt’s role in contemporary music, the Low song “Lust”, my life in the Church....

And my readers have been fantastic. I really love my readers. I’ve made new friends! It’s really been a terrific setup. I by no means want to stop, but it doesn’t look like I’m getting my way. I’m distressed. And as I “helpfully” read in St. Silouan the other night (it doesn’t always feel like help at first), “Here is a sign: if you are distressed over anything, it means that you have not fully surrendered to God’s will.” God’s will — not the drive to bear fruit, certainly not a growing audience — is what I must pursue, and true religion teaches me to rejoice at the opportunity to do so. That’s the hard part for me now. When a week passes, as it might soon, without me posting anything new on Substack, I’m not going to feel like rejoicing.

I’ve judged my father for throwing tantrums whenever he doesn’t get his way. That’s the man I knew growing up, and it’s often what I have to deal with in the present. And here I am, the son of my father, not getting my way. Right under my judgmental nose, though, he might be making improvements, benefiting from his disease. What about me? This past week especially, I’ve cycled through anger one day and depression the next. As my readers can well imagine, I see this polarity for what it is and I battle against it. My attachment to my will, however — to my independence — will keep me swinging between the passions regardless of my feeble resistance. Fruitfulness for its own sake cannot be an idol. Attention on the internet cannot be an idol. Obedience to God’s will, made manifest by the commandments of the Gospel and the exigencies of life, must be my path. Towards the end of my time at the monastery, on the desktop of the old IBM ThinkPad on which I did my Scriptural studies, I put Michael Kapeluck’s icon of Abraham sacrificing Isaac. It has remained there since (I still use that ThinkPad for studying Scripture). My user pic on the internet likewise has long been the scene of Alexander making a whole-burnt offering of his dream home in Andrei Tarkovsky’s The Sacrifice. Ever since I saw that movie at age seventeen, this has had to be my path. Whatever it is I cherish in this world, I must love God more.

Maybe this current trial will blow over. I have something I want to post next week. That’ll get me through the Apostles’ Fast, and that might be the frame in which my current trials are occurring. I’ve had harder times in my life than this, but as Apostles’ Fasts go specifically, this is the toughest that I remember having. Glory be to God for all things. I rejoice at His mercy. I wish I could offer here a contemplation of the meaning of this liturgical period, but instead I’m just out in the world living it. That’s the meaning of the Apostles’ Fast, though, so there you go. Sts. Peter and Paul, and all the holy Apostles, pray to God for me, my father, and my sister. That God’s will be done. I offer praise to the One without whom I don’t wish to accomplish the least little thing: Alleluia.

Yeah, no.