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

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)

http://www.says-it.com/safety/index.php

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.
Curtains!
Arranging.
Be Careful What You Take to Bed With You.

Enough is Enough

Self-Preservation. Paper mosaic collage, 4 x 6″.

I recently was waiting at the sheriff’s station. In front of me was a sign directing people to something serious sounding, having to do with civil cases. It was written in Comic Sans. All caps Comic Sans. I wish I’d had my camera. But since I’d had to go through a metal detector to get there, I figured it likely wasn’t a camera-friendly place, alas.

And why would I be visiting the sheriff? Family stuff. Not my immediate family, thank God, but those from whom I am immediately descended. Little did I know when I started making a book of a bed with sharks swimming around it how apropos it would be.

It’s such a cliché, the artist with an insane past. Most folks couldn’t make this sort of thing up, but, friends, I’m being harassed. By my own parents. For my health and sanity, I’ve been intentionally estranged from them for about 20 years. Psychological, medical and law enforcement people have all concurred that this is a most sensible and excellent idea.

Nothing says Christmas better than a blog comment describing your dead brother in the box he was cremated in. Thank God for the spam button. Apparently, they’d been monitoring this blog. And after I disclosed my recent diagnosis of Multiple Sclerosis, they decided to use the comment function to get in touch.

Almost 12 years ago my brother Eric died at age 30. He was autistic and lived with them. After he was diagnosed with a terminal liver tumor, our father screamed at him “What are we going to do when we lose the money we get to keep you!” Eric confided to me that he thought they only wanted him alive for the money he brought in. For most of Eric’s life, our father thought it was hilarious to follow him around the house, grabbing his head and shaking it. “It’s so light!” he would announce. “There’s nothing in there!”

My parents tried to prevent me from having contact with Eric, in some twisted attempt to use him as a tool to get to me, and punishment for my perceived sins. Returned to Sender

They believed that hurting him and me both was appropriate. My mother told anyone who’d listen that I’d stopped writing to him and didn’t call him after he became ill. She returned his mail to sender, when she felt like it, and they screened all calls and grabbed the phone away if it was me on the line.

One extended family member didn’t believe me when I said my brother couldn’t call me and I couldn’t get a call to him. “That’s crazy! I’ll go over there, give him my cell phone and we’ll call you!” He told me to sit by the phone. It never rang. My father said he couldn’t allow that. It would upset my mother too much if she knew my brother was talking to me.

But what my parents don’t understand is that most people, at heart, are kind. There were people who let me know when Eric was in the hospital, so I could call after hours. At one point Eric was sent north from Central California to Stanford for a few days. At the time, I knew someone who worked at that medical center. I flew down there, and the friend arranged it so I could come see him after visiting hours. Eric told me our father had raved at him in the car on the way up, angry over having to drive him a few hours to the medical center and having to stay overnight in a motel. Totally in character. Eric and I got to see each other, say our goodbyes and make our peace. And our parents, up until this post, were happy thinking that they’d managed to prevent that.

This recent attempt to harass me through my blog to cause me more pain because I was just diagnosed with M.S. was the final straw. Most people grow out of bullying by the end of high school. There are ways of dealing with this sort of thing.

So here you go, Mom and Dad. I am old enough at this point, and have the friends, expert professional help and resources to keep you from harming me.

Now, back to working on my current book.

My Fantastical Imagination

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?)

Daily Planners

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.

Life from a Pill Bottle

I feel as if I am returning back to the land of the living. My original intention for this blog had been to focus on paper and book art to the exclusion of more mundane personal stuff, but I’ve been finding that hard to do. There is just too much overlap between what goes on with me and what I wind up doing (or not doing) in my work space.

Actually, when I set this thing up, I hadn’t planned to let anyone even know that I was doing it. I’d thought I’d just create a little anonymous spot on the web where I could motivate myself by writing about projects I was thinking about and about miscellaneous paper-related discoveries I’d made online. If anyone actually stumbled upon it and kept reading, swell. But I wasn’t aiming to share my life. Unbloggerly of me, I know, but that was my thinking.

 

Then, a funny thing happened. When I was doing the bookmarks recently, I had to put my info on the back of them. And, to my surprise, I found myself putting this blog address on the back. I’ve been using the Paper Chipmunk name as the imprint for my book work. I guess I’m embracing my inner chipmunk. And sharing my life…

 

In spite of a show coming up soon with the book arts guild I belong to, I haven’t been able to do much of anything for months. My health matters have been getting worse and worse. Not to sound melodramatic, but I’d reached the point where I was seriously pondering “my affairs.” As in knowing deep down the time had come to damn well get them in order, however one is supposed to tidy up such things. But I felt too unwell to even do much of that. The scariest part was nobody could really offer much of an opinion what was wrong. Some major endocrine stuff, among other things, was happening, but of a sort that should be controlled by taking artificial replacements from pill bottles. However, it didn’t seem to be working very well. And doctors’ patience runs out when answers don’t come easily. I felt like I was slowly dying, quite literally. My MD was probably hoping I’d be sucked up by aliens on my way home, never to reappear.

 

Then an amazing thing happened. My pharmacy was going to switch my hormone replacement with another generic brand. I have allergies to some ingredients in pills, and this new one had some questionable things in it. So, feeling annoyed that I was now going to have to pay a lot more for my meds, I grudgingly went on the name brand version of my rather common drug, hydrocortisone. Within half a day of switching brands, I felt better than I’d felt in a long time. People I hardly know have been stopping me to tell me how much better I look. Even the constant pain I live with, something that’s not supposed to be related, became a bit more controllable. The change has been remarkable.

 

I’m sharing my rather personal medical saga as a sort of public service. If your medication doesn’t seem to be properly controlling your problem as well as you think it should be, it might be the brand of your pills. This is actually not the first outrageous generic medication incident my family has suffered from. I’m discovering it’s a common occurrence. The ever-expanding generic drug industry seems to be largely a racket.

 

However, in celebration of feeling alive again, and in honor of pills, I have made a bottle of a pharmaceutical I am calling Codex. Why read when you can take your books in pill form? Each capsule contains a miniature perfect bound book. If things remain controlled, over the next year I plan to make an edition of 5 bottles of Codex. Or, rather, Paper Chipmunk Press will be issuing bottles of Codex…
As an aside, I digitally designed several of the miniature book covers. Although I knew they were going to be shrunk down too small to be legible, I had great fun coming up with faux titles. A few: Iatrogenic Horror: a Novel; Arts and Crafts for Phlebotomists; Doctors Kill… I think you get the idea.

Pro Re Nata (I Was Warned)

I’ve posted links to other people’s books on Flickr. Today I thought I’d add something of my own. I don’t have many photos of my book and other non-cut paper work on the web. Some things I need to photograph, but others I’ve simply parted with before making a record of them. At the moment I’ve been feeling desperate to get back into the studio to do some work, but I’ve been so unwell and exhausted that it’s almost impossible for me to do anything. It’s frustrating.

I’ve made books for many years, largely in the background to other things, mostly to be given as gifts. I’d always thought of them as not my “real work,” whatever that is. But then I began making books and objects as, partly, a way of dealing with the frustrations of living with chronic health issues. It was a way, sometimes, of making laughter out of pain. Book art just seemed like a perfect medium, for me, for such explorations.

This is my tribute to my medications and to the words of wisdom printed graphically on the sides of the bottles. Be warned.