Chronic illnesses must have some similarity in their psychological impact. Maybe related to grieving. In the first days of a diagnosis there is confusion, distress, yet also relief that this thing has a name. Searching for a cure becomes a family enterprise, the internet glows red hot with old medical journal articles, new experimental this or that, group therapy by fellow sufferers. This serves to educate everyone, yet it also embeds the illness more and more firmly in daily life. There are no days or nights when the illness isn't there. It hovers, even on good days or weeks, a known guest, but not a welcome one.
Small victories: a good day, a promising new drug, another imaging study, a procedure, surgery. Yet the illness remains. Perhaps attenuated for a bit. Perhaps not. Often there are cycles to the disease in which it extracts maximum discomfort only to relent and calm down for a bit.
An unspoken conclusion may arise. This is forever. He's never going to get better. Will this uninvited guest kill him? Stratagems come and go. Certain foods. Nap schedules. Walks. Getting out. Staying in. The internet goes cold, having coughed up what it could and added little, showing the vast abyss between knowledge and useful information.
Perhaps a detente occurs. Everybody does their part. No big improvements, but no big backward steps either. The illness sits down to breakfast with everybody, goes to the grocery store, snores at night.
This is not the end. The armistice finally crumbles under a sudden resurgence of symptoms. Or, new ones. Or, the failure of a remedy. Despair. Perhaps depression. Maybe it is forever. I just thought that in a moment of exhaustion, but what if it's true?
Each iteration of this cycle increases the psychological pressure on the afflicted and their caregivers, their loved ones.
You see, we expect problems to have solutions. Sure, there can be some unpleasantness, we know that. For sure. But somewhere in the world of helpers is the one who can fix this. Make it go away. Let us go back to life as it was before. If we can recall what that was like.
Hollywood happy endings may have been imprinted on our neurons, at least here in the U.S., but life knows better. Sure, there is my friend with ovarian cancer, stage 4b, who responded so well to chemo and successful surgery that her doctor is now talking cure. Yes, these instances do occur. When we hear about them, they raise our hope. Maybe. Just maybe.
Better to suspend hope for results. Better to stay with the day-to-day. Better to focus on spirituality, on matters of the soul. Why this latter in the time of Christopher Hitchens and Richard Dawkins, flat earth atheists? Because the one thing illness does not touch is our soul, that part of us that links us to the eternal, to the cosmos, to the ongoingness of things.
In our inner world we are not ill, the illness rages in the blood stream, the brain, the heart, the gut, the muscles, but we have our sanctuary where our soul lives on. If we allow the illness to corrupt our soul, to plummet us into despair, then we will be finished. If the illness itself is intractable, and even if it's not, the souls journey goes on, traveling the ancientrail you have been on since birth. The illness is part of the journey. But only part of the journey.
We are the end of a cycle on Shadow Mountain. Some symptoms have been vanquished, others not. Kate's continuing misery has taken a brutal toll on her and has been tough for me, too. As I've written numerous times over the last couple of weeks, I don't know where we are. I don't know what's next.
I'm finding practices designed to undergird my gratefulness, my joy, my equanimity have their limits. When I'm sick, as I have been since last Wednesday, they seem to slip away, leaving with me only the emotional fragments of my life, many of them painful. I refuse to stay in this place. What I do now is my choice. What do I need to choose?