At Last… An Answer!

Doctor Learning EmpathyThe last time I posted, months ago, I’d been feeling optimistic about the latest doctor I was seeing at UCSF. He’d seemed interested and respectful, unlike some of the others. But then his tests came back without an obvious explanation for my abnormal brain MRIs and corresponding increasing debility.

He quickly became disinterested and dismissive. I’ll spare you the details. But it was depressing.

Not long after that awful, demoralizing appointment, I found a little cloth doll at a craft store. My immediate thought was, of course, “Voodoo doll!”

Then, the last time my friend Shirl and I were at our favorite supply shop, Dollhouses, Trains and More in Novato, I found a cute little stethoscope. It fit my voodoo doll perfectly.

One of the things the dismissive doc dismissed was the pain I described that feels like burning pins on the bottoms of my feet. Some days I can barely stand to wear socks. Or, come to think of it, even barely stand. He said it didn’t mean anything.

Empathy is an important quality in a doctor, wouldn’t you agree?

Teaching a Doctor Empathy

However, in spite of the “experts” at UCSF, I might now actually have a diagnosis.

Sort of.

I visited a dear friend last week. She mentioned she’d recently found an amusing 70s-style tarot deck among her late husband’s things. She was delighted to know that I like tarot cards. “Pull a few!” she suggested.

And this is what I got:

A Diagnosis

Hey, I said as I turned over the second card, “Those are nightshades! That’s really funny. I can’t eat those. I’m allergic to nightshades.” We looked up the card in the the guidebook that came with the deck. It helpfully explained that people who follow a macrobiotic diet believe these are basically poison, but most people can eat them just fine. (Except for Ellen!, we laughed.)

After that was a card that said, “What’s Happening?”

Then the final card said “I come from a different planet.” Hmmm…. The guidebook explained that my memories were erased at birth, so I don’t remember. But I’m actually a space alien.

I figure it’s as good an explanation as any. Don’t you agree?

Travel Scenery and the Usefulness of a Sketchbook

I’m back from my latest medical excursion to the city. Actually, I’ve been back for a while, but upon my immediate return I succumbed to the virus du jour. It’s taking me a while to get my strength back. Hence, the extended silence. I went to see yet another neurological specialist. He doesn’t know what I have either. But at least he wasn’t an arrogant scum about it like the previous one. He actually seems to want to help. He’s also communicative and will answer a phone call, which, I’ve come to realize, is highly unusual. It seems I might never know what I have. But they’ll monitor its progression.

However, there’s more to a trip to the city than just medical stuff. There’s the scenery along the way!

Obviously, nothing says manly bar with “NO Grill” better than badly kerned Papyrus. Or at least it does if you’re in Willits.

I actually enjoyed the view from my Daly City motel.

What can I say — when you live in the sticks, having a streetlight outside the window is a welcome change of scenery.

Then I paused in Marin on the way back up. The motel scenery is more bucolic here.

Unfortunately, however, a convention of search and rescue professionals coincided with my visit. They were all fitness freaks. My room, I discovered, was directly above the treadmill. Let’s just say it was not as peaceful as the view would suggest.

And, of course, all throughout I dragged my sketchbook (and too many art supplies) with me.


The sketchbook especially comes in handy during medical visits. This time around wasn’t so bad, but the visit before last I saw a different neurologist. That one, unlike this respectful new one who answers phone calls, was an arrogant quack. Among other irritations, he twice walked out of my appointment for around 45 minutes.

The first time he left, I was at least still dressed. The second time he left me lying on the table, mid exam, in the paper gown. And didn’t return, again, for the better part of an hour. It didn’t appear to be for an emergency. He offered no apology.

At some point while lying on the table I realized my appointment wouldn’t be resuming any time soon. Again. So I got up and, after making a phone call and chatting for a while, got out my version of crayons and a coloring book and began to doodle. It really does help pass the time.

I call this spread “Medical Waiting Room.”


Thanks Dr. G

An ongoing project.

As many of you know, I grumble about medical people. I’ve seen more than my share of crummy quacks.

But my internist for the last 15 years was an exception. My suffering, both physical and mental, would have been so much greater if not for him.

He died last month, and I’ve been raw with grief.

Prior to finding him in the late 90s, I’d gone through a succession of lazy judgmental doctors. I was an artist and did not hold a conventional 9-5 job. I tend to come across as a little batty to medical people. I’d been getting sicker and sicker. One doctor told me all of my gastrointestinal problems were evidence that I didn’t cope well with stress and needed to be on Prozac (I was later diagnosed with celiac disease). Another told me I was like “a Victorian lady.” A bit too delicate and hypochondriacal.

At the time, my throat was swollen halfway shut all of the time. I’d gone to a local allergist who’d told me it could be any one of “hundreds of things.” It was pointless to try to figure it out. But if I started having trouble breathing, I should go to the ER. And that was all he could offer me. The doctor who’d made the Victorian lady comment prescribed a heavy-duty antihistamine that I later discovered was most often meant as a sedative.

I was telling some of this to the woman who cut my hair back then. She told me she liked her doctor. He took people seriously. He’d come up here recently from LA and was now chief of staff at the local hospital. He’d help. I was skeptical. But I was also desperate. I made an appointment, expecting to, yet again, get the brushoff and be told I needed Prozac. I remember telling a friend the night before that I was about to try a new doctor. “Whatever you do,” she urged,” don’t tell this one anything about your background! You know what they’re like…” I agreed that, indeed, feigned normality was my only hope of getting unbiased care. I’d try my best.

This new doctor’s reaction to my symptoms was “Oh my God! You’ve got a serious problem! Dangerous! We need to get to the bottom of this.” He assured me he would find out what was causing the swelling and the other sick-making stuff. In the meantime, he got me on some non-sedating meds and insisted I start carrying an anaphylaxis kit, just in case.

I walked out almost in a daze. A doctor who was taking me seriously? This didn’t happen. He discovered that I was allergic to milk, something that I almost found hard to believe. I also had other food allergies. Once my allergies were discovered, the alarming swelling and the chronic eczema I’d had for years vanished.

I later saw the chief of Allergy and Immunology at a major teaching hospital. She told me I was deluded. I could not possibly have those food allergies. She would know. She ordered me to consume milk for the health of my bones. She was so adamant that I doubted my own sanity. That night I ate ice cream. And swelled up and got rather sick.

I reported this later to my internist. He narrowed his eyes with disapproval. “Nothing…  from…  the… udder… of… a… cow,” he slowly hissed while shaking a finger at me. “You really listened to that woman?!”

Around this time, I began to develop indescribable pain through my right, dominant arm and hand. It was incapacitating. As an artist, this was a career-killer. The pain spread to my other side. Other inflammatory problems blossomed. Life was not good. But I was more fortunate than most, especially around here, in similar situations. I had a doctor who genuinely believed in easing suffering. If he couldn’t cure it, he was at least going to do everything he could to try to keep me as functional as possible.

My internist had enormous physical challenges of his own and knew what it was like to suffer from a patient’s perspective. He was an extraordinarily empathic doctor.

Over time, he became as much a friend as my doctor. He came to my art shows and I went to his spoken word/music performances. We used to talk so much about other things — politics, usually — that I’d ask, laughing, if he’d mind if I interjected with a medical question. This, in the age of 8-minute doctor visits.

He gave me most of the pharma packaging I use for arts and crafts. Leaving an appointment, I’d sometimes feel mildly self-conscious clutching a grocery-sized bag full of pharma industry sales paraphernalia.

He liked to encourage artists.

He once gave me one of his own antibiotic pills from a recent hospitalization. He explained that the single pill was worth $200. I painted it gold and placed it on velvet inside a pill bottle cap. I presented it back to him at my next appointment along with a miniaturized bound copy of the annual financial report of the pharma that had produced it.

The $200 Pill

We had an unusual doctor-patient relationship.

It’s not that I agreed with everything he did or suggested. I still smile when I think of one time when we were having a shouting match because I’d disagreed with one of his recommendations. As our argument escalated, his nurse — long accustomed to his conversational style — cheerfully strolled in and, over our bickering, announced she’d forgotten to take my blood pressure. She then proceeded to do just that, smiling, as we continued to shout at each other.

The memorial gathering for Dr. David Gans was this weekend. There were so many mourners, the room overflowed to standing-room only.

True to his spirit, there was a giveaway table in back loaded with gifts for the assembled.

Everyone was invited to help themselves to the pharmaceutical industry trinkets that had been collected from his office. (For those of you not in the U.S., you probably can’t believe most of this stuff.) Tears turned to smiles as people walked off with pharma-branded mugs, clocks, toothbrush holders, mini golf clubs, toys, cup dispensers, paperweights…

Staring at the table, my husband Victor whispered in my ear, “better get some bags from the car.”

I pictured Dr. Gans laughing.

New tool holder

Confusion Reigns

Confusion Reigns
“Off to go get more medical advice!” 8 July 2001

I just returned from my latest medical excursion to the city. Still no answers. I’m supposed to go back next month. Why? I sometimes wonder. I guess because it beats trying to get any help from the local “specialists.” (Insert mental image of a duck. Quack! Quack!)

By coincidence, just before I left, I discovered this page in a sketchbook from July 2001. How some things never change!

And this photo might be the last you might see from me for a while. It’s not that I don’t want to blog. It’s that the last update of WordPress wrecked my ability to upload pictures to my blog. Judging by the help forums, I’m not alone. It turned out that I actually could still upload tiny photos … 

However, on the advice of some of those help forums, I contacted my web host. They attempted to be helpful. And now that their IT folks have had a crack at it, I can’t upload any image to the blog. My reward for trying continues to be a server error. To be continued…

The last thing I wanted was to write another hand-wringing post featuring more IT woes. But there you have it. Wish me luck!

She’s Alive!

These aren't the cat's.
These aren’t the cat’s.

Hmm… it seems if a gal mentions her physical maladies on her blog and then disappears for several months, some kind readers will begin to worry. Thank you to those who’ve contacted me, and apologies if I still haven’t gotten back to you! I haven’t forgotten.

Yes, things caught up with me. Ours is a dual-degenerative-malady household (triple if we include the elderly cat — his pill dispenser has its own spot between ours). Things, alas, get “interesting” from time to time.

There was also an out-of-town jaunt to a Big City Academic Medical Center somewhere in there too. (Short answer: whatever I have, it’s rare. But they don’t know what I have.) A similar excursion is coming in the near future. It’s likely to be as futile as the last, even as the tests they plan to run seem ever more exotic.

Fortunately, there’s a great art supply place with a mind-numbingly huge paper selection not far from the Big City Academic Medical Complex. It’s also staffed by incredibly nice people. I discovered this when I, dead tired, drove away and left my cane standing in their parking lot. They took good care of it for me until I could return the following day. In fact, they were all so nice when I came back, what could I do, but buy some more papers to thank them?

One day when things were becoming particularly overwhelming, my dear friend Shirl showed up and whisked me away to one of our favorite haunts, the delightful Dollhouses, Trains and More in Marin County for some toy shopping. She knows what soothes my heart. The minute I saw this precious little empty store counter, I knew I wouldn’t be filling it with Fimo candies.

Candy Counter
Candy Counter.

She also urged me to get this lovely tableau for the studio. How can you not love someone like that?

Studio Tableau

Studio Tableau Close-up

But life goes on. I’ll be back soon to tell you about some nifty laminated papers I recently made, my latest plaything-journal-sketchbook, and my progress on the Book Art Object editions. I’m also working on some sketchbook models with an eye to putting together a workshop. Let’s just hope things stay relatively “uninteresting.”

A missed opportunity, plus a medical minute

Walking the maze of the medical establishment.
Walking the maze of the medical establishment.

A couple of days ago I was sitting in the consulting room of a neurologist. The neurologist wasn’t actually present at that very moment. I was waiting for her to get done looking at my MRIs in another part of the building. I looked at the reading material left sitting out on the counter for patients. They were cute little board books shaped like brains and heads, featuring things like pictures of MRI machines, CT scanners and drawings of an unhappy-looking woman clutching her migrainous head in despairing need of the pharmaceutical promoted within the thick, laminated and quaintly-shaped pages.

Yes — board books! Now, I love board books, and my medical inanity-inspiration-seeking muse was positively getting giddy. Yet, in this context … there’s just something about being a patient that is so rather infantilizing. Would there be coloring books featuring brain lesions as well?

Spiraling out of control.
Spiraling out of control.

Speaking of such (brain lesions, not coloring books), I was here seeking the opinion of yet another neurologist because my last MRI was, apparently, interesting. They’re now not sure exactly what condition I actually have. Bless the neurologist’s refreshing honesty. She said, not in these exact words, that she’d be consulting with Dr. Google to see if she could come up with any ideas.

Is there a point to any of this?
Is there a point to any of this?

At any rate, I seriously need to get back into the mindset of a blogger. In spite of the little camera that had been sitting in my bag, I hadn’t thought to photograph an arrangement of the board books until after I’d already left the medical complex. Such a wasted opportunity!

In related news, I recently made a little drum-leaf book for We Love Your Books‘ latest exhibition, Point. It is about how pointless it all seems chasing after medical specialists’ opinions. Since I have no images of quaint pharmaceutical-medical board books to show you, I’ll give you some images of my Point book instead.

The Point of This


I have not been abducted by aliens

I’ve been feeling quite a bit under the weather recently while having a lot to get through. I took a break for a while. I hadn’t meant for it to turn into two months.

One of the things on my plate had been yet another appeal to the evil pharmacy management company I’m now forced to get my prescriptions through. This isn’t related to bookbinding or art except on a personal level, since without the medication they’d suddenly denied me, my ability to function even minimally in my studio would’ve been quite up in the air.

Last year, we were under the power of a different company. Last year, I had an approval for a drug that is the difference, for me, between bedridden somnolence from M.S. or being clearheaded enough and having enough stamina to occasionally do things like, say, make a book once in a while. Without coverage, the medication is around $1,000 a month. The difference for me is so dire that we coughed up the money for a couple of months after I ran out and my appeals dragged on. But obviously that was not going to be sustainable.

The pharmacy benefit manager said that no study showed it worked for M.S.-related “fatigue” (which is a whole lot worse than what “fatigue” sounds like). The pharmacy benefit manager lied. Almost all of the research says it works. And the latest research actually shows that it not only helps significantly, but that people like me who take it long-term actually wind up less disabled down the road than people who don’t take it. I finally appealed to the state. And now, what do you know, I was told that not only has my drug been reinstated for me, but that the company is changing their criteria and will now approve it for M.S. It took 7 months to get there and required a lot of research and buying medical journal articles to show how much they’d lied. I’m grateful for me, but am so depressed for others out there who don’t have insurance coverage at all or who don’t have a university background (I was at one time a graduate student in linguistics. I know how to find things.) My doctor was angry and willing to write letters and call too. In all, it was a rotten experience that took a lot out of me for a while.

But not all has been bad. I had a book accepted into the next We Love Your Books show to take place later in the year (more on that soon). And I’m working on my first Book Art Object edition, a board book called Superstition.

And I got a kitten last week. Yes, I decided that three cats weren’t enough. I need to clean cat boxes even more often. I’m well on my way to being a cat lady.

I walked into a pet shop last week and, damn me, I fell in love. I now have four cats, three of them black. His name is Stephen. He’s going on 5 months old and growing by the day. And all he has to do is flash those sweet baby eyes at me and the latest torn up plant in the window is soon forgotten.

As you can see in the photo, he likes to sit on my lap at the computer (which has a weird but wonderful ergonomic keyboard that’s made it possible for me to continue to type in spite of pain in my hands). The mug next to the keyboard, you can’t see, is actually a chipmunk mug.

Little Stevie also likes paper…

I’ve also been indulging an obsession for board books, and will be teaching a workshop on how to make them for my local book arts guild this weekend. More on that and probably a tutorial coming soon (or at least sooner than 2 months from now).

[Update a few years later: I have since been undiagnosed with MS. I still have a neurological disorder and significant fatigue. It just is now nameless.]

Disarray Daily

Some of my blogging friends have been doing things like Worktable Wednesdays or finding other thematic days to highlight their studios. I thought I’d join in. Muddled Monday came to mind, but it’s not Monday. Disarray Daily is more all-purpose. Although Freaked Out Friday might’ve worked as well.

I need to get stuff done. I have a show headed toward me. Thanks to my various maladies, I feel muddled and very, very tired. Pretty much all the time. I have been doing things, but not finishing much of anything. I have quite a few half-made prototypes and projects. I keep telling myself this is good — better than no projects at all! Still.

I decided that I need to pick one thing and focus on it as best as I can. Just start working through the list. First up is a flag book called You’re Not Paranoid. I made one similar to it a couple of years ago, and decided to make a more polished small edition. This is my prototype copy. I took Karen Hanmer’s advice and used a heavier weight paper for the flags than the spine. This ensures a satisfying tactile experience when opened.

A few other things in the pipeline: a small edition foldout book about germs with petri dish covers; a Board Book for Bored Children that will require a disclaimer that, no, I’m not really suggesting children play with matches or bleach etc; a book about memory made with a dollhouse window in a box (still being assembled); and an accordion consisting of layers of transparencies. Still not started, but being contemplated, is something with a skeletons in the closet theme. And I haven’t forgotten the vending machine minis, although I haven’t been able to do much with them at the moment. I feel overwhelmed.

The pages will actually all be connected, accordion-like and attached to the petri dish.
Transparencies layered with dry mount adhesive. This is becoming more complicated than anticipated.
Really kids, don’t try this at home.

Most of these projects keep winding up piled on my table. Often all at the same time.

Reminds me . . . years ago a friend came to visit. He was a sculptor whose work emphasized open space and clean lines. After sitting down in my studio, he began to look noticeably uncomfortable. Beads of sweat formed on his brow. He needed to go outside.

My workspace had given him a panic attack.

RSS: Really Sad Story (An Appeal to Resubscribe)

With grateful thanks to Buechertiger, I discovered that my blog feed was messed up without me knowing it. The new feed was working on my end and sporadically working elsewhere, so I didn’t realize that others were having a problem. It used to work. I’m not sure what happened — possibly it had something to do with the forward that I have set up from the old blog. Whatever it was, I’m grateful to my persistent friend for leading me to dealing with it.

Unfortunately, in spite of trying to do it without dumping everyone, the only way I was able to get everything working right in the end was to start over. ARGH!! My growing list of deeply appreciated followers is now . . . gone. Blogger misery and isolation.

I do realize I’m trying your patience at this point over this @#$%! blog move, but please, I’m hoping you’ll find it in your hearts (and that you’ll find that, on the whole, I’m more entertaining than annoying enough) to resubscribe, even if you just did after the move. This really should be the last time. Thank you very much. And now please excuse me while I go pound my head against the wall.

My answering machine says that I’ve been abducted by aliens again and when the probing is finished, I’ll return the call. Moving this blog has, at times, really felt like. . . never mind.

I’ve been thinking about caution signs. I’m currently working on an edition of flag books that has some inside. Not showing aliens, but surveillance cameras. A peek is coming soon.

In the meantime, I’ll leave you with a paper crafts story. I have a surveillance camera in my studio, aimed over my worktable. It’s actually just a paper model designed by Kenn Munk that came with the book Papercraft: Design and Art with Paper. But the weird thing is, even though I glued it together and put it there, I found myself, in the first few weeks it was there, frequently looking up at it with a vague sense of unease, as if it were real. I’ve noticed that people quietly eye it when they come in. Interesting.

Be Careful What You Take to Bed With You

Nearing completion.

How ironic that I started this book/object before the situation I mentioned in my last post. Next time I get the urge to portray sharks circling something, I will take note.

Before I go further, I want to thank, from the bottom of my heart, my legitimate readers and friends for their support and encouragement. I’ve been deeply moved by the kind comments, messages and emails that I’ve received since I last posted. It’s been a bright spot during an otherwise dark time, and has meant a lot to me. Thank you.

Lovely washi.

On a happier note, I have a book project to share. I’ve finally been able to get back in the studio a bit, and have been on a Japanese paper binge. If you dip pieces of it into paste (in this case, rice starch paste) and remove the excess, you can form the  paper into almost anything. Leave it on waxed paper to dry, and you can have, for instance, miniature billowing drapes.

And what’s especially lovely is that it is non-toxic. I wouldn’t want to dip my bare hands in acrylic medium or PVA, but rice starch and distilled water? I feel like a kindergartner with something really cool and slimy.

Sticky slime! Dip into the paste, then run the paper
through fingers to remove the excess. Then shape.
After drying.
Be Careful What You Take to Bed With You.