Buying a Clue

Buying a clue

Well, replaying the conversation with the docs in my head, and finally coming to grips with this idea: This or these organisms will be part of my body for the rest of my life. They are training me to attend to my symptoms and find and use the correct protocol for that moment, for me.

Aha. Well. Goodbye to the word “cure.” Hello to life with an infectious autoimmune disease. I mean, this has been the case, of course. I’m just finally buying a clue.

Already.

The pen and ink work is getting kind of different, weird, harsh. I rather like it. But I have another more typical brush pen piece buried somewhere in my luggage. I followed Docs’ order, and headed to sunshine for the winter. It does make a difference. Something generations of people with testy ligaments and joints have known for years. I just never quite got that. I thought it was more of a social thing.

Anyway. Here I am. Getting it. And a bit confused about what to do next.How to record the recipes. A new way to keep track when my brain can’t really remember… I need to leave clues, a breadcrumb trail…

Within the Moment…

My husband, the poet Jack Ridl, who suffers from my Lyme and Babesia, and whatever else, wrote this for all of us tick-borne disease folk:

Within the Moment of Indefinite Suffering

All it takes is a tick. You can be walking
your dog. Your dog can be stopping to
sniff a patch of jewel weed or pausing
to pee on a post surrounded by poison ivy.

You could be watching a swallowtail slowly
lifting and settling its wings while resting on
a swatch of crown vetch. The sun could be
lost behind clouds, clustered in a cumulous

mound of white or sinister gray, the moon
could be full, waning, new, the stars moving
across their scrim of deep space, everything
still benign in its revolving threat. You

could be sweeping the walk, passing under
the pergola draped in wisteria, wedding veil,
honeysuckle, or merely sitting on the bench
beside the brook out back. Or taking a path

through the park, joggers steady-stepping, or
walking along the well-worn trail to the pond
at the edge of town where you could be sitting
under the willow, its branches hanging their braids

over your wait for the sunfish to surface. It could all be
beautiful: the day, the light, the breeze bending the tall grass.

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Reboot

Completely rethinking my thinking about this blog. Or thinking about not overthinking it. What this current life of mine needs is fewer huge projects with deadlines and more focus on making-as-therapy. What is it about us that we have to turn everything we do into a race with a finish line?

Production! Production! Production? Screw it.

As soon as I put a goal out there, I stopped drawing. And that’s telling me something.

So, now I’m just drawing. And sometimes the drawing takes a long time. Today’s snapshot is of an unfinished page I’m working on filling. It sort of reminds me of the kinds of hallucinations I had before I knew what I had and started treating it. But those were three- or four-dimensional, of course, and the images seemed completely disconnected. But they were black-and-white.

Also reminds me of my high school notebooks, which I wish I still had.

But good news is, I’ve been getting a little writing-for-hire done, here and there. Getting back to work feels good. And today am starting on a new run at IV antibiotics that, I truly believe, will be my last. Shhh… I need to believe it, okay? Just let me believe it.

I haven’t lost my soul, folks. I am thinking about the day when I’m back to normal and can do something to raise money for Lyme disease research. I’ll think about that when I’m healthy enough to think about that, and not a minute before.

Particularly what is nagging at me is the idea of an Ushahidi site that will let people report about Lyme disease in their area. A map showing spottings of ixodes scapulari, of lyme disease in animals, of CDC positive cases, of doctor-diagnosed cases, of suspected cases. Maybe using the Crowdmap engine?

If you have the mad skills and the time and the inclination to work on this before I do, please go ahead. The sooner it’s up, the sooner people can show, graphically, their experience. Needs to be a world map. My immediate concern is for the States in the Middle, with little to no funding to train their health care workers to recognize or diagnose or treat Lyme when it hits. But Great Britain and Europe are having similar reporting/recognition/funding problems. This project would need a good science advisor or three. Hmm..

Really?

Just when I thought it was safe to get back in the water… I spent a day in the world and by the end of it was rocking a sore throat.

But the best part of that day, aside from the sunshine and peoplewatching, was auditing a class in graphic fiction being taught by a buddy of mine. It’s an ambitious class, covering a lot of ground, and I’m going to love it. We are reading, well, just about everybody, and working through Abel and Madden’s textbook, and one of Scott McCloud’s too.

One of my assignments is to keep a comic diary, which will feed this blog. But it might change the nature of it, too. Covering really interesting things like my cold, my work, and etc. I’ll keep the lyme-comics separable from the other stuff through categories. Fair?

Piebald is the New Black

The hair loss is a steady thing. My Modern Chinese Medicine doc says it’s a by-product of vasculitis, a common Lyme symptom that can crop up anywhere. But even as old hair loses its grip, new hair is coming in. Before long, I’ll have some pretty funky tresses. Meantime exploring the world of volumizing hair products.

Just when I think I’ve got a handle on all the symptoms Lyme is going to give me, I get something new. I think I’m about to have to admit that Western Medicine has done all it can for me. I’ve about spent down their stock of antibiotics, each one bringing on a side-effect that means I have to stop. I’m so close to the finish line, with my brain getting better every day, and my hips and knees and feet downright serviceable over the past week.

Thank god for the herbal protocol. I see that I’ll be putting my money on that horse. Having run out of horses….

Just a Coincidence, I’m Sure

Oh you know, those of us who have been lucky enough to find doctors who understand how to treat a body that’s all squirming with spirochetes and pathogens, who understand what tenacious community-builders these critters are, begin to notice that the docs have some similar characteristics. Family exposure to Lyme Disease is just one of them. The good ones have a sense of humor, too. And a kindly, charming way of slowly helping you to see that that you’re so beyond screwed, and it’s going to take a long time before you feel yourself again.

Meeting

I’m very good at magical thinking. I like to imagine that all my tissues are healthy, my immune system is intact. Yeah, I might have a little bug or two, but that’s never stopped me before. What’s a few bacteria to a healthy girl like me?

But then some nasty symptom pulls me underwater by the ankles, and I have to face facts. My organs are not functioning properly, because they are diseased. I am diseased. The pathogens are traveling freely throughout my body. I can’t do my old job until I finish my new job: getting well. My new identity: Lyme Patient.

Damn! If I had to have a disease, does it really have to be Lyme? Really?

The characters are multiplying in my little comic. I’ve named the little ginger-jar-kitty-thing Chachky, my highly symptomatic Lymie. Cute, but not functional. Just another thing you have to dust. Nebby is a nervous little warbler with a nasty habit of telling the truth when you don’t want to hear it. Nebby lacks empathy. An itty bitty psychopath. Then there’s the buck. The buck. Hmmm… What about him?