You *look* great

You look great, a photo by jujuridl on Flickr.

The tick bites and leaves its bacteriae and pathogens behind, and those frack with your immune system, and your brain and heart and joints, maybe a kidney… But except for palsy or a rash, no one sees them at work.

You still look like a normal person. The lesions and clots are under your skin. And except for the hallucinations and the staring fits, usually no one but the people who know you very well have any idea how Not You you really are.

You see your friends when you are well enough to be seen, but not when you are in bed, blindfolded, on anti-nausea drugs and enough painkillers to stop a horse.

So, you know, you look good. And if Fernando was right, that’s what really matters.

Red Squid

Squid 07-10-11, a photo by jujuridl on Flickr.

Watercolor class. The entire month of July. This weekend’s homework: Paint what you like. I like the natural history drawings/paintings in Seba’s spectacular collection. This from the  book Cabinet of Natural Curiosities. Also I have psychic history with squid that dates back to early childhood that leaves me sort of fascinated and scared of them. And they are delicious.

Buried

Buried, a photo by jujuridl on Flickr.

My first commission! Well, sort of commission. This piece was conceived, designed, and modeled by Pete, a young Lymie from North Carolina, whose life and career have been put on hold while he battles this mean disease.

Quite one thing for me, in my lucky life, in late middle age, to be battling this disease. But when it takes young people out of society and pins them down in their beds when they should be at their energetic height…. Oh it makes me mad.

Because this Harvard-grad, soccer-playing, management consultant’s Lyme was treated once, and he recovered once, then relapsed, his case fits into the highly contested “Chronic Lyme” stage. That’s the big black crack in the earth that swallows up lives and livlihoods and futures.

So his battle to pay for his therapy costs him what little energy he might have left to have a life. His life is lived in his little bedroom, with a big black cloud over his head. There’s no getting up with the mountain of medicine and debt on his back.

Well, I think Pete will get up, eventually, and I can’t wait to draw that cartoon.

If you’d like to help Pete fight his lyme, you can find him on Facebook.

And if you’d like to help everyone fight it, then put some money into research, will you? Follow the Donate link above to send money to the Columbia University Tick-borne research group?

Can’t Read the Handwriting

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.

Let’s not make a deal

Okay, so here’s the first cartoon with my new hair. Which is my lack of hair. I cut it off when it grew too thin, and I found it too depressing to keep wadding up handfuls of it with every shower. It just goes down the drain at this length.

Right, so this gag is about the really not great choices you get with a diagnosis of late, disseminated Lyme or chronic lyme or “post-lyme syndrome,” if you must. The point is, you have to educate yourself enough to choose, and any choice you make sucks. I could elaborate, but I’m not feeling verbal at the moment. And “sucks” does pretty much cover it nicely.

Metta

Metta, a photo by jujuridl on Flickr.

Sylvia Boorstein on Krista Tippet’s On Being gives an inspiring Metta meditation. Meditative drawing, among friends this morning. Playing with ink wash in a Kuratake brush pen, outlined with fountain pen, both Noodler’s X-feather. Derwent watercolor pencils. Bee paper pen sketcher’s sketchbook.

Symbiosis

symbiosis, a photo by jujuridl on Flickr.

Hey, I finished it. I think.

This inky thing started out about burden, then parasites, and ended up being about symbiosis when my sister and I had one of those dust-to-dust talks.

You know, the talk.. The one middle aged people have about how much we’re going to fight the inevitable slide. I’m putting up a big fight now, but feel myself getting tired of it, starting to wonder if I should have more grace and acceptance of the circle of life.