Jun 132015
 

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?

Oct 122014
 

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 (it later turned out I had 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 far more fortunate than most, especially around here, in similar situations. I had a doctor who genuinely believed in easing suffering. He tried and suggested practically everything, made referrals and tried different combinations of medications. If he couldn’t cure it, he was at least going to do everything he could 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 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

Jun 262013
 
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

 

May 072013
 
It's here!

The Blue Notebook, Vol 7 No. 2

Much to my surprise, a few months ago I was asked if I’d like to contribute an artist’s page to the next edition of The Blue Notebook.

Hmmm… did I want to be in the book arts journal The Blue Notebook? I was already designing the page in my head as I typed back that, yeah, I think I’d like to do that(!). I was told that I could do anything I wanted with my page. But they were also kind of hoping I might do something based around The Literary Cure.

The Literary Cure is what I call my prescription bottle of “Codex” capsules (there’s a photo of it in the gallery). Each capsule of “Codex” contains a miniature book. There are 20 capsules in each bottle. It was an edition of five.

Each copy of The Literary Cure also includes a patients’ informational insert (I wrote about the making of the insert here). For my artist’s page, I decided to show the text of an insert with a photo of a bottle of Codex.

My copy of the journal recently arrived. I was not expecting to to find my page right at the center fold. Oh my!

The center spread!

Coincidentally, in this same issue Emma Powell wrote an article about her work with We Love Your Books and about some some of the artists who’ve contributed to the WLYB exhibits over the years, including yours truly. I felt quite honored, especially since there are some others there whose work I have admired for quite a while.

Emma Powell's article about We Love Your Books.

Emma Powell’s article about We Love Your Books.

That name looks familiar...

Hmm… that name again.

Among other things I like in this edition is an interview with Helen Douglas, who was commissioned to create a work in 2012 as part of Reflective Histories: Contemporary Art Interventions at Traquair House. She made a manuscript book echoing the small devotional books in the library at Traquair, which is the oldest inhabited house in Scotland. The pictures of the book that are included with the interview are exquisite (unfortunately, I couldn’t find any photos of it freely available online). As always with The Blue Notebook, it takes a while to get through all the interesting stuff in it. I’m really delighted to have been included in this last issue.

 

Sep 022011
 

Tip of the day: if one has difficulties with concentration, one should not watch TV while gluing together pages of a book. One might discover, after the books have dried, that some of them are missing pages. Just sayin’.

I’ve finally almost assembled (reassembled?) an edition of 15 petri dish books. The title is Mysophobia: Mainstream Culture. The pages are individual circles that were scored and glued together at the side.

I’ve discovered that scrapbooking toys have their uses. My 3″ circle punch is now my friend. And… I can’t believe I’m admitting this on the Internet… the Martha Stewart score thingie. I remember seeing this very item in a store a while back and sneering. Then came the need to score lots of circular book pages. I could’ve done it with a ruler or a jig. But then I read this blog post from Ginger Burrell. I have to agree; it’s a nifty tool. Who’d have thought…?

The book is about modern germ paranoia. The “cultures” are paste paint and acrylic paintings that I manipulated in Photoshop. I find it fascinating how behavior that is now seen as normal would’ve, not long ago, been seen as compulsive and disordered. I don’t know what it’s like elsewhere, but here in the US–at least where I live–every big store now seems to have disinfectant wipes at the door. Anti-bacterial soaps are big business. Yet, do we actually get fewer communicable illnesses these days? I doubt it. Outside of a health care context, all this disinfectant wiping and dousing comes across as some sort of quaint evil-repelling ritual.

Of course, ironically, all the evidence suggests this germ phobia is only creating more antibiotic-resistant germs.

   

Dec 202010
 
Purposeful studio chaos.

I threatened to someone that I would post a picture of my work table. Now I’m getting around to it.

Along with it, some background. It’s been an interesting time. I have a show coming up next year, and need to be productive in the studio. I also have been dealing with health matters that make that difficult. I used to spend a lot of time cutting paper and creating intricate collages. Over the last decade or so, it became impossible to continue doing that.

Getting a diagnosis has been a long struggle. One neurologist years ago told me that my problem was that I was an artist. He informed me that the same “fantastical imagination” that allowed me to create my artwork would lead me to have “a fantastical interpretation of my bodily sensations.” This neurologist also, by way of emphasizing how funny and crazy we artistic types are, told me that one of his patients was the musician and painter Don Van Vliet, popularly known as Captain Beefheart, who, incidentally, lived in my small town and died just a few days ago at the local hospital. To emphasize his point, the neurologist, while laughing, impersonated Don’s distinctive Multiple Sclerosis-related movement difficulties with what I’m sure he thought was a comic flourish. I didn’t know Don, but had heard that he had a reputation for fiercely defending his privacy. We wild and funny artistic types.

I was also told that I’d caused my painful problems myself through my artwork (too much fine hand motion, even though I had other symptoms that clearly had nothing to do with my arm pain). I am now careful to avoid mentioning art to medical people, lest it bias my care.

I could spend several web pages detailing cruelties from doctors and others. A friend once laughed at me and made it clear she thought I was a contemptible hypochondriac. Others haven’t said it to my face, but I suspect they’ve thought it.

This past week has been bittersweet. I finally found a decent specialist out of town. I now have a name to put to this (it’s basically M.S.). It’s degenerative, but the decline won’t be all that quick. But I can shelve any fantasies I might’ve still been harboring that things will get better.

I recently started a new medication that has helped with some of the more distressingly mind-numbing symptoms. A few days after starting it, I had a sudden urge to pull out some of my old collage things, including a little 4 x 6″ picture I hadn’t worked on in almost 6 years. The picture above is my chaotic worktable when I had it out. It was wonderful to be immersed in my old work again. My recent trip put a damper on my stamina, but I’m hoping to get back to it. I’ve also been working on some book-related projects (pictures to come).

I’m always torn over how much I should post about medical things. There is a sense that one should maintain one’s privacy, and other people’s medical problems are boring. On the other hand, I don’t like that vague feeling of stigma. Being ill or having a disease isn’t a source of shame. I’ve also long been using my experiences with the medical establishment as creative fodder. I can’t pretend this aspect of my life doesn’t exist.

Product of creative fodder?
(As I wrote out those last few lines there was a sudden massive flash of lightning and a thunderclap outside the window. A sign?)
Oct 112010
 

I’ve been away. I had to travel to a big University of California medical campus for what turned out to be some ok help from one department, and some patronizing and dispiriting non-help from another.

Alas, feeling down and wanting to console myself, I did a little shopping. Large universities, especially ones with big science programs, have bookstores with esoteric goodies. Coming all this way, at least I could pick up a few petri dishes, slide holder cases and watch glasses for later. I have some slides at home and was wondering what I could sandwich between them in the semi-translucent holders.

I think some of the petri dishes will become “cards” for friends. I’m trying to figure out what to use to write inside them that will suggest fuzzy and/or semi-translucent blobs of cultured bacterial matter. Suggestions are welcome.

The student checking me out at the bookstore asked if I was doing an experiment. “No, I’m an insane artist and I’m going to use these to make bacterial-looking birthday cards.” His face brightened considerably.

Aug 212010
 
My Daily Planner

I did a stupid thing last month. I discovered that if one takes life-sustaining meds, it’s a bad thing to forget a dose. A really bad thing. This little oversight, and then my trip south, put me out of commission worse than usual for a while. I guess I should’ve paid more attention to my own bookmark design from a few years ago. Alas.

I’d been planning to contribute something for an exhibition next month at Eureka Books that our local book arts guild is having. I was going to make something appropriately sellable and commercially pleasing, like my miniature cat ABC book. But it just wasn’t in me. So I finished My Daily Planner instead. It fit my mood better.

PS: I wrote earlier about how I waxed the papers to make the cover material for the little books.
Apr 022010
 
Book blocks made from pharma inserts, waiting to be cased in.
 

Here’s some more background on those miniature books I mentioned in the last post. Several months back, I found a 7-compartment weekly pill organizer in the drugstore. There was just something about the size of it—slightly larger than usual—that screamed “art supply.”

I decided to make little books that look like day planners, one for each compartment. The pages come from copies of the pharmaceutical inserts from my meds. They are 7/8″ x 1-5/8″.

I’ve been trying to find a suitable covering material for the little books. I’d been thinking of using Tyvek, but in the end it didn’t look “day planner” enough. Mostly, the tiny lettering just didn’t look right no matter how I tried to affix it to the Tyvek. I opted, instead, for inkjet prints on paper.

I made a solid black background and used white lettering. But then the coated inkjet paper scratches so easily and the texture wasn’t quite right — what to do?  I decided, as a protective gesture, to coat the papers with beeswax, which was something new for me. It turned out that the coating not only offers scratch resistance, but the texture of the wax rubbed into the paper definitely suggests “day planner” to me. I was quite pleased with the result. They are smooth and glossy and not “waxy” at all (unfortunately, the picture doesn’t convey this very well).

I made the first one last night and eagerly showed my husband, who said, “Wow, a bible–how funny!”

Bible?!
I had to confess, it did look more “bible” than “day planner.”
At any rate, I can recommend wax-coating inkjet printouts. I’ll explain a little bit more about my process for coating them in the next post.
A finished “day planner”
Feb 022010
 

I have a collection of pharmaceutical informational inserts. I mostly use them as art material. Some actually came with my own prescriptions, and some were given to me. (It’s helpful to have an acquaintance in the medical field who is willing to pass these things along.)

I first started paying attention to them when I was putting together an entry for a We Love Your Books show in ’07.  The theme was A (is for add) B (is for book) C (is for collaborate). I chose to do P is for Pills. It was probably the first book-related thing I did that I packaged in a pill bottle. I filled it with little pamphlet-style books made from the informational inserts.

At any rate, I felt that my bottles of “Codex” (tiny books in capsules that, as a work, I’m calling The Literary Cure), needed a little something more–an accompanying informational insert, of course! So I opened up InDesign and Illustrator and got to work.

Of this edition of five, three are already spoken for, and one will be headed to a big book fair at the end of this week. I have not actually made that many bottles of Codex yet. Tiny capsules with tiny books are slow going for someone with hand issues (that is, me). The three that are being purchased were ordered by someone who is willing to wait, even knowing that it might take me months. What a great person! I partly added the insert for her. She deserves a little something extra for her patience.

All this reminds me of the funniest real pharma insert I’ve seen. Have you ever read the fine print on some of these? This was for a well-known sleeping aid. It had the familiar charts displaying the adverse events that had been noted in clinical trial subjects. After all the various bodily systems and their related side effects were listed, there was a mysterious category of “social circumstances.” Here it was noted that one research subject, after consuming the sleeping aid, had experienced “exposure to poisonous plant.” I tried to imagine… a crazed sleepwalker nibbling on a euphorbia? Running through a field of poison oak? The possibilities…