Sorry, it’s been awhile. I’ve been drawing. But I’ve also experienced a system crash. I’m on a new machine, new apps, and new software for my hateful scanner. You get the idea. Learning curves with several blind traps.

Anyway, I’ve scanned something. And if my faltering brain can remember what I’ve learned, then I’ll be able to scan again without weeks of relearning. Fingers crossed. Creek don’t rise.

Docs are moving me from a focus on Babesia treatment to a focus on Bartonella. Headaches have reduced to just the symptoms shown here. During the cycle when I would normally have a blowout headache, I now just have a sensation of being squeezed from the neck and jaws. This accompanied by a weird tympannic sensation in my ears and soft pulsing of light behind my eyes, of course in time with my heart beats. The stuff that used to come before a headache.

But then, instead of revving up into a splitting headache, it just stops.

The image is what I hope would happen. That the squeezing sensation would just squeeze those spirokitties right out of my head.

I’m working with a fabulous physical therapist now, and working at patience as I recover from all that time in bed. Bed time is bad time. Takes a person down fast. Makes coming back up again real, real slow.

Props to my docs who have gotten me out of bed. I know I have a long way to go, but it’s got to go faster on my feet. Speaking of feet…. OW.

Working on watercolors. Thought I had an original thought here, but then a pal showed me Tom Wesselman’s work from the 1960s. Oh well. I had fun painting it, and learned some stuff, and see where I need to work more or harder or something. I might do a series of these to keep the effort going, because I like the problems these forms present.

What this has to do with Lyme? Well, lymies can’t eat this stuff. Really, anyone who wants optimal health should avoid anything that comes in bright packages. And highly processed wheat and sugar. It’s hard to give it up, but we do get better faster when we do.

That is all.

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.

If you’ve got Lyme on the brain, neuroborreliosis, you know the symptoms. Foggy head, language processing problems, brain SPECT scans that look like Lupus or Encephelitis, and mean, basically, that your brain skips like a scratched up LP.

Practically it means that while reading, you can get stuck repeating a short phrase over and over and over and over and over and…. until something knocks your needle out of the groove and you can press on. I’m never sure, because there is no way to set the timer when it starts, but I suspect I have lost as many as 10 minutes in a loop. Who knows? Sometimes I can keep moving while it happens… While it happens, it happens, it happens, it happens, it happens….

So the assignment was to paint the old skeleton that lives in a closet in the Art Department. I studied it from all angles, thought about it, and noted that the pelvis was wired together rather inelegantly. The way my pelvis feels most days.

These days the worst of my pain is in my hips and the iliac crests and S.I. joints and thigh bones, the knees, ankles and feet. It’s a kind of neural pain that hits full speed around 5p.m. and is really very distracting by bedtime. I’m experimenting with higher and higher doses of gabapentin to try to get it under control enough to sleep without being a disconnected, staring blob when I wake up.

So I focused on the part of the bones that hurt, thinking I could work some voodoo cure by virtue of sheer focus…

Okay, that didn’t work. But I did think of a reason for the fractured pelvis. That nasty pea. That’s the culprit. Not unlike a practically invisible pathogen — hard to imagine something so small could destroy my beautiful wickedness.

Daddy always said I was a princess.

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.

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.

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?

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.

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.