Can’t. Or won’t. So the ridiculous situation with Lyme folk is that they are constantly trying to learn about the disease at a time when it’s really challenging to learn anything. Reading comprehension is affected. Memory is affected. And then there is the small matter of not having degrees in medicine, biochemistry, or biology….
When I manage to put my sense of humor to work on it, I picture my synapses tripping over themselves like the Three Stooges, or information just slipping by too quickly, like Lucy’s chocolates on the conveyor. I recognize that I’ve read this research paper before, but only after an hour of trying to read it again. No idea where I stored it or what I thought about it or whether I’ve brought it up with my docs.
Docs don’t like to give up when they think you can beat something. And that’s the attitude of my docs, bless their hearts. So I keep fighting, though my ammo is dwindling.
As the ammo supplies wane, I’m starting to read the clues — we know so little about this disease and its late manifestations, and there isn’t a whole lot of emphasis on curing the late disease. The focus is, as really it should be, on eradicating it early. Because that’s really when it’s treatable.
What I think I’ve been unable or unwilling to see in the writing on the wall is that we are unlikely to have this disease nailed in my lifetime. That’s not a dramatic statement. That just puts people like me in the boat with all the folks with the various autoimmune diseases, about which we really know very little.
Except we don’t seem to know how to fix late Lyme, or manage the symptoms or throw it into remission. And it seems if you treat it like Lupus, say, you could make it a lot worse.
Meantime, I’m relistening to Full Catastrophe Living by Jon Kabat Zinn, and reading How to Be Sick, by Toni Bernhard a useful book by a law professor/buddhist-turned bedridden person. And that’s very helpful. It has me focused on what’s very right about my life, which is a lot. A real whole lot. It helps with the fear and the anxiety of finally reading the handwriting on the wall.